The Wife of a Schizophrenic

Men Vs Women

2011-10-22T22:13:00.003Z

I read a long time ago on Seaneen's blog that men are more likely to receive a diagnosis of Bipolar, whereas a woman is more likely to be diagnosed with a personality disorder, or told to pull themselves together (this is not a direct quote). I'm here to tell you today that this is absolutely true.

I suffered quite severe mood swings when Mr Man was in hospital, and for quite a few years afterwards as well. I would swing from feeling completely elated, like my heart would burst with love and joy, to feeling that heavy crushing pain in my chest, with unimaginable emotional anguish. I was confused. I didn't know what was wrong with me. I kept a mood diary and went to speak to my GP.

My GP literally dismissed how I was feeling with "We all feel like that" before I had even finished my sentence. He obviously wasn't going to take me seriously, so I dropped it.

I struggled on until eventually it got too much for me again. This time I spoke to a lovely nurse at the surgery, who unfortunately could do nothing to help me, but she took me seriously and urged me to see a different doctor. This time the doctor listened to me, but explained that we all suffer from mood swings (sound familiar?) of varying levels. He refused to increase my anti-depressants, but referred me for counselling, which I never received.

Fast forward another year or so, and I saw yet another GP who increased my medication and I finally got some counselling.

During this time Mr Man frequently spoke about how concerned he was about me to his Occupational Therapist, because he too had noticed my mood swings, and particularly my "angry phase" when I literally wanted to kill people. I can speak about this now that I have recovered, but at the time I was so ashamed, and I didn't think people would believe me or take me seriously. Well... they didn't did they?

Looking back, I now know that I definitely wasn't suffering from Bipolar. I didn't really believe I was at the time, but I was just so confused about what was happening to me. Post Traumatic Stress also causes mood swings, which is what I now believe I was suffering from, but of course no doctor will ever concede that. For the most part I have had to struggle through it on my own, and yes, considering the amount of times I asked for help, and the amount of times Mr Man asked for help for me, I am bitter about this.

Of course, it would all be very different if I was a man. Now don't get me wrong; I am not a feminist, and I don't usually go along with all this "Men Vs Women" baloney, and "Men are from Mars" etc. etc. But, I know of men who have "achieved" the Bipolar status, by simply being... Well, I can't actually think of a polite way of saying it.

Now, I'm not saying that I wanted to be diagnosed with Bipolar - far from it. I simply wanted to understand what was wrong with me and to get help for it. But it really winds me up when I struggled so hard for so long to get help and was never taken seriously, when these men who are manipulative control freaks with a bad temper get told "You can't help it, you have Bipolar".

Being married to someone with a serious mental health issue, I am usually very sympathetic to others in the same plight, but for the same reason, I cannot tolerate men acting like spoilt children and being excused for their behaviour by their wives or girlfriends (or even ex-girlfriends) because they have "Bipolar". Mr Man has his limitations, but his illness never causes him to behave like a spoilt child.

Please correct me if I'm wrong (and I'm sure Seaneen will) but my understanding of Bipolar is that the mood swings are unrelated to daily events in your life? And I don't believe that people with Bipolar use self harm to manipulate the feelings of others? And I always believed that people suffering from Bipolar needed more than just anti-depressants, but mood stabilisers too?

To my mind, a diagnosis of Bipolar for these men tells them that they are being taken seriously, and not just being fobbed off with anti-depressants. But it also tells them that it's ok to act like a spoilt child when you don't get your own way, and it's ok to use self harm to manipulate others, or scare them with violence. And again, doesn't this reinforce the idea that people with mental illness are dangerous and violent? When in fact these people are just bad tempered individuals with depression? (Meaning, the bad temper was present already)

Two things need to change: a) GP's need to stop diagnosing patients with illnesses which are clearly beyond their expertise, and b) men and women need to be treated equally in the area of mental health. Yes, women are generally more emotional than men, but that doesn't mean we can't have mental illness too! And on that thought - when a GP says "we all have mood swings" do they mean all women, or men and women? And if they mean men and women, why are men told they have Bipolar and women are told "we all feel like that"?

I can't say that the counselling I received ever helped with the trauma I was trying to recover from. Even the counsellor preferred to ignore those events and focus on other things in my life. I have slowly recovered with the help of medication, time, and prayer, but it's taken about 9 years.

I can't possibly have suffered from Post Traumatic Stress though - because I'm a woman.

Another Call for Help

2011-06-04T12:07:00.002Z

Following the post "A Call for Help" I received a comment from another lady struggling to cope with her sick husband and the situation it had placed her in.

I also don't know what to do anymore, after three years struggling with my husband's sickness. I'm from Asia, well-educated, but was forced to move to Europe (in a matter of two days) because of his sickness. I basically abandoned everything I had for him.

But after three years, on top of his sickness, my troublesome mother-in-law is constantly causing problems by demanding way too much attention from her son all the time and bad-mouthing me whenever she can. My husband loves me, but he doesn't see what his mother is doing to me. He needs his family, he said, and his mother loves him and pampers him like a child all the time.

I am depressed and at the end of my strength. I lose my temper very easily these days. My friends and family are all in Asia. And here I can hardly have an independent life due to language barrier and qualification mismatch. I just want to get myself out of this whole mess. But a divorce will be a huge blow to him... yet I can't see myself living a life like this anymore...

I also want to ask, what should I do?

Anonymous, I really wish I knew what to advise. I'm sorry that life has become so unbearable for you. Unfortunately I have no solution for troublesome mother-in-laws! If he enjoys the attention she lavishes on him, I can see why it would be difficult to convince him to leave - but what about you? Don't you also deserve the attention of your family? Maybe you could reason this way with him.

Although he may need additional support due to his illness, it doesn't mean that he can have his own way all the time! Maybe he just doesn't realise how the situation is affecting you?

When Mr Man was in hospital I was at breaking point, and so exhausted. He wanted me to visit twice a day. It was hard, but I had to explain to him that although I loved him very much, I also had to look after myself, otherwise I would get to the point where I wouldn't be able to help him at all. It helped that a nurse explained this to him also, and he was very good about me not coming for a day while I got some much needed rest.

I think sometimes when you are caring for someone with mental illness, the whole situation can become about them, and how they feel. But it really doesn't hurt to let them know how you feel as well. I used to avoid crying in front of Mr Man, but actually, when I did cry he would look surprised, like he'd only just realised that other people feel distressed over things too, and then he would forget about his own feelings for a little while.

So the only thing I can recommend is that you discuss how you feel with your husband. I don't know how ill he is at the moment, but he may surprise you and be stronger than you think.

I would also recommend trying to get some support for yourself. You don't say which European country you are in, so I don't know what the services are like where you are, but maybe visit your GP, get some help with your depression, ask to see a counsellor, and ask if there are any support agencies for carers.

I really hope this helps.

Post Traumatic Stress

2011-05-18T23:31:00.003Z

I saw my Carer Support Worker the other day. I haven't seen her in quite a long time, so there was an aspect of my demeanour which was very noticeable to her - she said I am less angry than before. She's right. I'm not sure when it happened. I suppose it's been a gradual process, but I definitely feel less angry than I did before. On the other hand, I feel I am struggling more with anxiety.

Now, I know previously I deleted all the posts relating to my own mental health, or parts of posts where I had described how I felt, but that was mainly due to the confusion I was feeling at the time and the fact that people were trivialising how I was feeling. But there's no point in denying it any longer because it is obvious for all to see - Mr Man has recovered from our ordeal better than I have. Interestingly, my Carer Support Worker tells me that this is not uncommon.

I have expressed on this blog before (and then deleted it) that I feel I am suffering from a form of Post Traumatic Stress. Some health workers agree that it is a possibility, whilst others won't even entertain the idea - probably because it would mean admitting the substandard care that Mr Man received, which put his life in danger and which caused me a great deal of anxiety. I don't want to enter into a debate over symptoms and who is right or wrong, but the fact is that I am "not right" and I haven't been "right" since 2002 when Mr Man was admitted. Frustratingly, I still get asked about my childhood. I don't understand how people can think that caring for someone you love, who was in danger of killing themselves at any moment over a period of several years, is not traumatic enough to cause PTS - and especially given that when he was in the care of others I had no way of protecting him and those caring for him didn't take the danger seriously. Honestly? Is it just too obvious to be true? Does it have to be something buried deep within my subconsciousness from my childhood?

I watched "Dolphin Boy" tonight. Obviously this is an extreme case of Post Traumatic Stress and disassociation, but I could relate to some of the boy's feelings. The rage, the confusion, the avoidance, and the desire to live in a "bubble". It was a long process of four years before he was able to go back home and live a normal life again. My symptoms are obviously much less severe than his, but with no real help to work through my emotions, I am still struggling nine years later. I know I can't be the only one.

The Baby Thing

2011-04-09T00:57:00.004Z

Hello again readers. I know my posts have been few and far between for quite a while now. A lot of positive things have happened during that time. Mr Man is now back at work a couple of days a week, and he is driving again! His recovery is going really well, and things are really looking great for him and for us. We're even going on holiday this year!

But today I want to talk about the baby thing. A very long time ago a reader asked me how I felt about children and whether I ever wanted any, because for her it was a deciding factor in separating from her husband. Yes, I have wanted children, and this has been a painful issue for me, and not one I was ready to talk about at the time. So why now?

Tomorrow we shall be dining with a couple of friends who are expecting their second baby. (Yes, we have a social life now too!) I'm dreading it, and yet only yesterday I was telling friends how glad I am that I don't have children when I hear the struggles that other parents have. That statement is true; I only have to have my nieces and nephews over to know that I couldn't cope with being a full time parent, but I still find it difficult to manage my feelings when friends have babies. I tend to go the other way completely. In an unconscious attempt to manage my broodiness I avoid the subject altogether. I avoid pregnant friends, I avoid baby sections in shops, and I definitely avoid babies. Yes, I'm sure they're beautiful, but I don't really want to look to decide for myself, and I certainly don't want to hold them.

Mum's get a bit sensitive when people don't love their babies though don't they? And whilst it's acceptable for a man to completely ignore the fact that a woman is pregnant and not even mention it in conversation, for a woman it is not. And for a friend to do that?...

I've already done it, and I feel awful. One of my closest friends has had a baby recently and I hardly saw her throughout her pregnancy and I still haven't been round to offer my congratulations yet and to hold the baby. Being one of my closest friends, I can only hope that she knows and understands why, without me having to say a word.

Anyway, I haven't really explained why we don't have any children have I? Considering we chose our children's names before we even got married, I suppose it must seem a bit strange to some.

We had decided that we would enjoy five years together before we started a family. I always had health problems anyway, so it was always questionable as to whether I could cope with a young one. I got broody before the five years were up when I became the last one in my family to not have any children, but I agreed to wait. On our 5th wedding anniversary Mr Man was a patient in the psychiatric hospital. It had been just 3 weeks since his attempted suicide on the ward (which I have not written about in detail yet) and it was time for me to have my contraceptive injection, which I had every 12 weeks. I cried at the appointment, but obviously it wasn't the right time to start a family, and at that point, I didn't know if there ever would be a right time.

Later on down the line I became very broody again. In the past I had always said to Mr Man to just let me have my cry and I would get over it, but this time was different. It was the only thing I thought about. I spent sleepless nights crying. I would lie in the bath for hours until the water had gone cold, just lost in my thoughts and day dreams of having a child. Despite his illness, Mr Man agreed for us to try for a baby. But it just didn't happen.

Some doctors were helpful and supportive, and some doctors were not. One doctor suggested that if I wanted a family I should leave my husband - without even knowing which one of us was possibly infertile. Another doctor suggested a sperm donor, simply because of the risk of passing on Schizophrenia to our child. I wasn't happy with either of these suggestions, so with the support of our GP we started having investigations into why we were not conceiving.

There was quite a wait for those kinds of appointments, so in the meantime we just kept trying. To be honest, it got to the point where I just couldn't cope with the disappointment every month. Every month was the same. I felt like if I just crossed my legs to stop my period from starting that it would mean I had to be pregnant. Some months I was late, and I would convince myself that this was it. I would wait as long as I could possibly bear before buying a pregnancy testing kit - which was never very long at all - only to find that my period had started by the time I did the test. Every month it was the same crushing disappointment.

One month was different. I was late, but I was determined not to get my hopes up. Mr Man on the other hand needed to know one way or the other. I took the test, and the result was positive. I wrote about it at the time in my other blog:

Mr Man, on the other hand, was impatient for an answer. Saturday night I took a test, but the faint blue line which threw me into panic wasn’t even visible to Mr Man with his glasses in another room and with poor night lighting. He was satisfied enough to get a good nights sleep.

I, on the other hand, was awake for a good deal longer, worrying about how he would react once he realised the truth.

I had to confess my concerns to him the following day, and after the initial shock and panic had worn off he seemed fine. The line was very faint though, and I needed to be sure. I took another test this morning… actually I’ve taken five in all over this weekend, and the only test to give a positive result was the first one I took, which was what started all this confusion in the first place.

I can't remember why I was in a panic, considering it was what I had wanted for so long. Mr Man was never very keen though, and only ever agreed to it for my happiness. By the end of this little episode I was an emotional wreck. My period started, and then it stopped again. I didn't know what to think. I was clinging on to every bit of hope there was. Finally my period started properly and I knew it was over. As disappointed as I was, I was also relieved. I couldn't cope with the emotional roller coaster that trying for a baby caused. As strange as it sounds, I actually found it easier to come to terms with the thought of never having a baby than the continual disappointment every month from not falling pregnant. In a way, I gained strength from making the decision to remain childless, instead of the choice being taken from me every month. Besides, Mr Man and I have both suffered relapses since then, and I know we wouldn't cope with the responsibility of raising a child. So I found hobbies.

Hobbies? That sounds like such a shallow replacement. But I also enjoy the company of my nieces and nephews as often as I can, and I tell them that I wouldn't be able to love them as much as I do if I had children of my own. I do love my nieces and nephews, and seeing them doesn't cause me pain, only joy. But babies... there's just something about babies.

Coping with being childless has meant that my brain has switched off all maternal instincts. I'm not interested in pretty baby clothes, and I find I have to remind myself to even look at the baby and say something nice when I bump into someone I know in town pushing a pram. My brain is obviously trying to protect me, and it does a very good job of it; I hardly ever think about babies these days. But then there are those times when I just can't avoid it, and it's painful. Life would be so much easier if everyone I knew just stopped having babies.

Related post: Under Pressure

A Call for Help

2011-01-06T21:12:00.004Z

I just received this anonymous comment on the post "Why Do People Stop Taking Medication?" If anyone has any advice for this reader please leave your comments in the comments section below.

I don't know where to turn and I cry everyday trying to find help for my brother. You see he was in prison for 18 yrs and when he came out he was on Risperidone. Everything was fine until he stopped taking it. I asked why and his reasons were the weight gain (about 80pds) loss of sexual function and he said his thoughts were not his own. He was not long before seeing a jail cell after stopping his meds. They kept in jail just long enough that his disability was cut off and now he is about to loose his apt. He thinks he is God. He has not had a meal in so long now and I am over a grand in debt trying to cloth and look after him, financially I can do it anymore and don't know what to do. He is now anorexic, if I were to guess I would say he weighs about 120 and he is six feet tall. This weight loss took just 3mths. When he was arrested it was because he was yelling in his apt and so I gather people called because they were afraid. They jailed him for over 2 mths trying to get a bed in the mental ward for an assessment. Well apparently the time ran out for the legal limit of holding him and that was three days after they got him in the hospital and the just released him. Everyone in the family has turned their back on him because they are afraid of him.
I don't want to see him end up on the street but what can I do to prevent it. I can't make him take the meds not can I write the letter to disability to get him reinstated. The local mental health association is of no help as I have called the worker that we saw when he first got out. So I am asking here on this forum if anyone has any suggestions.

Anonymous, is your brother agreeable to seeing a doctor? I'm not sure which country you are in, but I'm pretty sure that in the UK a person can be detained on a psychiatric ward under a section of the mental health act for the treatment of anorexia, as he is obviously a danger to himself (not eating = death). If he will see a doctor then maybe he could have his medication changed to something that doesn't affect his sexual function - Abilify seems to be one that doesn't have this effect. Unfortunately I think many, if not all, antipsychotics increase weight gain. Of course, although these side effects were the original reason for him stopping his medication, there is now the added problem that he probably doesn't believe he even needs them anymore, since he believes he is God.

Just out of curiosity, has he said why he won't eat? Or is it simply that he doesn't take care of himself? Either way, this is a burden too heavy for you to carry alone. Is there an advocacy service where you live? Any doctors surgery should be able to give you the details of one. They should be able to advise you on how best to get help for your brother, and may even make calls etc. for you. I hope this helps.

Dark Days

2010-03-13T18:32:00.006Z

Continued from "The Truth Revealed"

June 2002

Things were so different in the psychiatric hospital than they were in the psychiatric ward in the general hospital. It was like stepping into another world. On the psychiatric ward where Mr Man had been for his first 3 weeks, the staff mixed freely with the patients. They chatted, they drank coffee together, they went for walks in the grounds, and they played board games. In the psychiatric hospital the staff always seemed to be cooped up in the staff room, engrossed in conversation with other staff members, and not in any mood to be disturbed. Don’t be mistaken; I don’t mean that they were busier, or that they took their role more seriously, far from it. They were engrossed in conversation about their own concerns - laughing, joking, and playing computer games. Whether you were a patient or a visitor, you were met at the staff room door with the same level of contempt.

Occasionally staff ventured into the lounge where the patients would be watching the TV. Two staff members would sit chatting openly with each other. One would be nodding and rolling her eyes as the other complained about having to buy a new hamster for her 8 year old “and these lot think they’ve got problems” as if somehow it compared. The rest of the room would be silent. Or sometimes a member of staff would be standing, as if sitting with patients would somehow contaminate her. “Stop shaking!” she would scold one of the patients, as if the patient had any control over her state of anxiety.

The male staff wouldn’t mix so much. They patrolled the corridors, looking for some “mischief” to correct. “You can’t sleep in here” they would say to Mr Man, as he sat with his head in his hands in the quiet room, fully awake, although drugged to the eyeballs.

Of course, I didn’t see all these things immediately, but I was fully aware that the atmosphere was just different somehow. I couldn’t put my finger on it. It was just… wrong.

It was the morning of Mr Mans first team meeting in this hospital. On the other ward Mr Man and I would go in to see the team together, and I had once gone in to see the team alone. But here, when I asked to speak to the doctor first the nurse seemed shocked, as if nothing like it had ever happened before. She made such a fuss that you’d think I had just asked for the doctors head on a plate (which, in hindsight, I wish I had). She didn’t seem to know what to do. She asked Mr Man, who obviously agreed (bearing in mind I made my request in front of him and he had made no objection), and then she scurried off to ask the doctor. She came back, and I was granted an audience with the ~~king~~ doctor, although it was most unusual.

I entered the room. It was much bigger than the one on the other ward. There were no armchairs or sofas, just upright chairs. The royal court sat in a large circle, and opposite the empty seat sat the king, on his throne. I walked in nervously and sat down. I was overwhelmed by the number of people present, all staring at me. On the other ward there would have been maybe 3 other people, as well as the doctor. But here, it seemed as if the whole ward staff were present. How did mentally unwell people cope with this? I thought. The ward manager, to my left, introduced himself and then one by one he introduced the rest of the team to me. I managed a faint smile and a nod of the head but their faces and names didn’t register; I had something of the utmost importance to tell the doctor, and I was keen to begin.

“I wanted to see you because Mr Man has told me something that I know he won’t tell you” I began. “He told me last week that he thinks people are watching him all the time and that there are camera’s everywhere, and he’s admitted that he hears voices as well”

My statement was met with silence. Didn't they hear what I had just said? The doctor flicked through Mr Mans notes and finally said: “When did Mr Man first start seeing Dr. Kay?”

It wasn’t the response I was expecting. I was thrown “Er… I don’t remember” Why doesn’t he just check the notes? I thought.

I babbled on about Mr Man not telling anyone because the voices have told him that they will hurt me if he does. There was still no response.

“When did Mr Man first start taking Olanzapine?” he said.
“I don’t know” I replied. Why wasn’t he acknowledging anything I said? Was he even listening?

“What dose was he taking?”
“I don’t remember”
“When did he stop taking it?”
“I don’t know”

My mind was in turmoil, I had just discovered that my husband could be suffering from Schizophrenia and I wanted… no, I needed some assurance that my concerns were being taken seriously. Instead I was bombarded with questions which would be answered if only the doctor would read the notes. Of course, at the time I didn’t even know that Olanzapine was an antipsychotic drug. I wouldn’t even have suspected that he would be given such a medication, as he had never admitted to hearing voices before. The matter seemed urgent to me but no one else, and no one considered how the knowledge had made me feel.

The interrogation continued for a while and then finally, with a nod of the head I was dismissed. I left the room feeling that I hadn’t been heard. It wouldn’t be the last time. Not writing notes, not reading notes, and not listening to either Mr Man or myself would become a common problem over the following months.

I didn’t understand why I wasn’t allowed to be present to support Mr Man when he met with the team. He hadn’t been to a team meeting on his own before, and after my own experience I didn’t hold out much hope of them being compassionate towards him. I sat in the garden, on the same bench Mr Man and I had sat on when he first told me about the cameras. It was a beautiful sunny day, as it often was during those emotionally dark days. As I cried I wondered what would happen – to him, to us – there were so many thoughts and feelings but there are so little words to express them.

And then a little bird came and landed beside me on the bench. It didn’t seem afraid of me at all. It was as if it was sent to comfort me. “Have no fear, you are worth more than many sparrows” I thought. And I tried to take courage.

What a Difference a Day Makes...

2009-06-30T23:59:00.004Z

...Well, 21 actually. I just logged in and realised that it has been 3 weeks to the day since I last posted, and after reading through my last post, I hardly recognise it as me, and yet I remember writing it through tears. I can't believe how completely different I feel.

I remember Seaneen saying once that if you feel suicidal try to ride it out for just one month - chances are, you would have changed your mind by then. It's so true. I'm not saying that I wanted to kill myself and that I've been waiting for a month to pass, I'm just saying that 3 weeks ago I would never have imagined I could feel as different as I do today. This is probably the best I have felt in at least 7 years.

In fact, I'm in such a positive place right now that I'm scared of losing it or spoiling it in some way. For the first time since Mr Man's first admission into hospital, I'm at peace, and I want to stay at peace. For this reason I have decided that I won't be writing in my blog for the time being. Although I have struggled to update my blog regularly for quite some time now, I never thought I would stop writing it completely. But dwelling on past experiences has not allowed me to let go of the anger I have felt over certain events, and although I desperately wanted to share them with the world, I now feel that it's time to move on. Of course, never say never. This is perhaps a "See you later" rather than a "Goodbye".

Thank you all for reading, and especially those who have taken the time to comment. The blog will remain and I hope that others will continue to benefit from it.

Dread

2009-06-10T13:42:00.007Z

Hi. Yes, it's me, the sporadic blogger. I just felt like posting a little update today, partly to get things off my chest I suppose.

Things have been, well, y'know, the same. Or worse. I'm not sure. Better actually, because I have been avoiding life like never before. Less anxiety because I haven't been shopping or done any cooking or cleaning or... anything. The cupboards are empty. Mr Man is starving. We've just been living off take-aways. But the counsellor said it's ok to avoid things that cause me anxiety, so that's ok. (?)

Well, it did help with my anxiety for a while, but now I realise we have things to pay and I have wasted all our money, so long term it's kind of made things worse. Now I have to go back to managing the anxiety of shopping and cooking with the added anxiety of worrying about money.

Some readers suggested ordering shopping online and having it delivered, which was a very good suggestion and I did try, but I had to register and fill in an online form which kind of brought on a panic attack and I haven't tried again since.

I feel like a failure. All I can do is apologise to Mr Man over and over again, but it doesn't seem to mean anything. "I'm sorry" doesn't cover it. It doesn't do my feelings justice.

I have an appointment with the counsellor again on Friday and I'm absolutely dreading it. I don't want to go because I'm still so upset by the things she said last time. I don't trust her anymore. She made assumptions about me without even giving me the chance to speak. I expect she thinks I'm trying to blame all my problems on the way Mr Man was treated in hospital in 2002, which I'm not, but she wouldn't know that because she didn't let me explain. It certainly was a major contributor to the anxiety that I was already suffering, but as you readers and other carers will understand, struggling to keep Mr Man safe was traumatic enough. They can't comprehend that. Despite all their training and qualifications, none of them truly know what it's like to try to keep the person you love safe, when they are genuinely suicidal for so many months, or even years. None of them know how hard it is to watch the person you love give up on life and lay in bed in their own urine, refusing to get up, refusing to eat and refusing to drink. None of them know what it's like when the person you love is persecuted every day by frightening hallucinations and there is nothing you can do to protect them from their own mind. And none of them know how it feels to place the person you love into the care of others, only to realise that you have placed them in even more danger. None of them understand these things.

I know, I should have recovered from all of this right? Mr Man isn't that poorly any more is he? So why haven't I been able to move on? I don't know the answer to that. And I don't know why it has rendered me useless in every area of life.

Other updates

Mr Man has been sporadic too. His mind becomes over active and he doesn't sleep for days, and then he burns himself out and sleeps forever. He swings from being a great entrepreneur to being an online gamer who doesn't feel well enough to handle life's responsibilities. He's been very understanding but unable to help me in practical ways. He still starves if I don't cook, and I still have to remind him several times a day to take his medication before he actually takes it.

Untitled

2009-05-24T04:42:00.004Z

You may (or may not) have noticed that I have deleted some posts and parts of others that contained information about my health and/or depression. Something just snapped in me one night. I felt that my blog had become a very self absorbed pity party and also I felt that some people were not taking my feelings seriously, which made me want to suppress them again and keep them to myself.

I almost cancelled my appointment with the counsellor for this reason, but the carer support worker urged me to go, reminding me that these feelings have a habit of resurfacing. I wish I had cancelled it. I saw this counsellor back in 2005 because I was struggling to come to terms with how Mr Man was treated in hospital, and she was very sympathetic. Four years later I'm having to see her again with the same issues, but this time she told me that she thinks the problem stems from my childhood, that I need "a mother" figure, and that I will probably always need support.

To be honest, at the time I was so emotional that her comments just left me confused. So confused. I couldn't make sense of my thoughts or what she was telling me, how I was feeling or how to express it. The last time I felt that mentally and emotionally confused is when Mr Man was actually in hospital and all these problems began. (At that time all I could do was pace the floor and bang my head saying: "Think. Think.") I've been in that confused state for a couple of days now, but now that I'm starting to get my head together I feel angry.

Ok, I didn't have an ideal upbringing - who has? - but I like to think that I managed to deal with those issues and put them behind me a long time ago. The fact that I am still struggling to come to terms with the events of 2002 only illustrates how traumatic they were. I constantly felt that Mr Man was in immediate danger of losing his life, and I had to rely on people who couldn't care less to protect him. Their lack of interest caused me unimaginable stress, not to mention the things they did that actually contributed to the worsening of Mr Man's illness. I fail to see how my parents are to blame for the total incompetence and shockingly poor attitude of those doctors and nurses who were supposed to care for Mr Man.

Once again I just feel that those people are being excused for their behaviour and that the trauma we have both suffered is not being taken seriously. It's my fault for being weak, it's my parents fault because of my upbringing, it's everybody else's fault except their fault for being completely unprofessional and not doing their job properly.

Once again, I apologise for not responding to emails or comments. Please be assured that I value each one, but I can make no promises to reply any time soon.

An Interesting Statistic

2009-05-06T02:38:00.003Z

In light of the recent news coverage of the investigation into the murder of a pregnant woman by a man with Schizophrenia in 2005, the BBC Health Correspondent Branwen Jeffreys has this to say:

The number of homicides by people with mental health problems has remained fairly constant at around 50 a year since the 1950s. In the same time frame homicides overall have roughly tripled.

The level of public anxiety about the risk of violence from people with mental health problems is measured by the Department of Health in England as part of a wider survey of attitudes. It suggests a third of people think someone with a mental health problem is likely to be violent.

The public perception of the risk of random violence from someone with mental health issues appears to be out of step with reality.

So in the last half a century, although the rate of murder in the general population has roughly tripled, the number of those with mental illness committing murder hasn't changed. It would be interesting to know how many people in the UK are diagnosed with a mental illness compared to the 1950's, but I always find the internet to be a tad over-rated, and I never seem able to find the information I'm looking for.

The full article can be found here.

Realisations

2009-04-21T23:49:00.008Z

Some of this post has been deleted

I've been looking for reasons for why my anxiety has got worse recently. I think one reason is simply that my depression hasn't been under control since September 2007, and anxiety has always gone hand in hand with depression for me. Another reason directly relates to Mr Man. Although he has suffered occasional blips, Mr Man has been doing really well since his medication change last summer, and yes, that has been a cause of anxiety for me. He's doing so well that he is eager to start working again and wants to run his own business from home, but I am aware that his condition can change at any time - as it did a couple of weeks ago - and when it does I have to be ready to support him. Supporting him emotionally is one thing, but supporting him in running his business is something else. As much as I would like to help Mr Man run his business, I just can't cope with that sort of responsibility. Hell, I can't even cope with opening the post every day, and half of that is junk mail.

Another reason why his recovery scares me is that ultimately he would like to be able to cease claiming benefits altogether. I worry that the pressure of having to work once his benefits stop will make him poorly again. Maybe if he had been consistently well since last summer I wouldn't worry so much, but although generally he is much better, I have seen a lot of fluctuations during that time. He goes from being very focused with lots of business ideas, to burning himself out and feeling under pressure. I'm just not sure if he is ready for this sort of commitment, and yet I have to let him try because it's what he really wants to do. He has an appointment coming up to see someone at Working Links, so it will be interesting to see what sort of support they can offer him, if any. Of course, any changes in income will mean changes in housing benefit etc. and I'll be the one who has to keep filling in the forms and taking bank statements to the council.

I want to see him work because I want to see him happy. I know that he feels ashamed that he's not able to work. But it's just such a huge step. Maybe all of this has been worrying me more than I realised.

Oh Crap

2009-04-13T23:39:00.005Z

Am I allowed to say that? I mean, I know some people are offended by the word, but although Thomas Crapper didn't actually invent the flushing toilet, he was a plumber and he did make toilets and invented the floating ballcock. So that's probably how toilets came to be known as "the crapper", although it's believed the word "crap" was in use before he was even born, and that the fact that he made toilets for a living was an example of "nominative determinism" whereby a person is more likely to do a job connected to their name. I think it's a load of old ballcock myself - I mean, what kid being laughed at in the playground for having a name that basically means "poo" is going to think to himself "I'll show 'em. I'm gonna do a job connected with poo when I grow up". Nah, I don't buy it.

So, if you're offended I apologise.

But anyway, before I completely forget the point of my post - I've just discovered that my "mrmanswife" email address hasn't been working since February. So if you have tried to email me and haven't received a reply I apologise, although to be fair, I'm rubbish at keeping up to date with emails anyway.

This will explain why Seaneen was contacted by Radio 4 to have her blog turned into a radio drama and not me! They couldn't get hold of me! (yeah right) A big big congratulations to Seaneen! And make sure you're all listening to Radio 4 on Friday 8th May at 2.15pm.

I'll try to get Mr Man to sort my email address out for me as soon as possible.

Not Fine

2009-04-11T00:27:00.008Z

Some of this post has been deleted

Yesterday Mr Man was "not fine". He was very ill in fact. He was banging his head on his pillow in an effort to get the voices to stop. He didn't even hear me talking to him and seemed unaware of my presence until I put my arm around him. He told me he had to get on with his "work" again, and he had to mark himself with his number - 4064. I was worried that he was going to carve it into his arm with a knife or something. Later he got out "the folder". The folder has paper in it, and that is where he writes his "codes" and things like that - "work" that the voices have given him to do. He hasn't got the folder out since 2004. I couldn't believe his symptoms had deteriorated so much in such a short space of time, but I knew what the trigger was - we were supposed to be going out that evening to commemorate the death of Christ, and he was very anxious about it. Needless to say, we didn't go.

Mr Man is still unwell today, but much better than yesterday, and typically he doesn't remember much of yesterday. I say "typically" because it is quite common for Mr Man to be unable to remember periods when he has been acutely ill. He's been a little unwell for a while now though. Just a couple of weeks ago he spoke to his Occupational Therapist about how he was feeling. She was concerned enough to start visiting him every couple of days, and she even gave him her mobile phone number in case of a crisis, but he didn't want to talk to me about how he was feeling. I didn't mind; I understood that he doesn't like me to worry about him, and to be honest I was just glad that he was talking to someone instead of keeping it all to himself.

"Outside My Window" by Philippa King

Self Prescribing is a Bad Idea

2009-03-07T08:43:00.002Z

Given the list of horrendous side effects listed in the previous post, it's easy to see why self prescribing is a bad idea. Although these side effects are extremely unpleasant, other side effects can be fatal, and mixing medications can also be dangerous. It's obviously a good idea then to have a qualified professional monitor your progress on any medication regime.

That being the case, I am getting extremely tired of spam posted in the comments section to advertise drugs online. I will not endorse self medication of drugs that clearly need qualified supervision. In this country at least, it is illegal to provide medication without a prescription from a qualified practitioner.

One company in particular keeps repeatedly spamming my blog. You would have thought they would get the hint by now, seeing as I always delete their comments.

I don't like spam. (I don't like luncheon meat either) It's just so... cheap and nasty.

Why Do People Stop Taking Medication?

2009-02-20T06:00:00.001Z

We have already discussed the fact that violence is not a symptom of Schizophrenia. However, there are those who become so unwell that they are unable to distinguish between reality and their delusional beliefs, which are often fed by hallucinations, and these ones may resort to violence in the belief that it is necessary to protect themselves or others. This is rarer than the media would have us believe, but just like any other animal on this earth, we all have the capability of becoming violent when we feel under threat. For many suffering from severe mental illness, the greatest risk is suicide.

For the most part, once a person is relatively stable on their medication a relapse this severe is unlikely, unless they have stopped taking their medication. Indeed, the one line that seems to crop up time and time again in news reports of this kind is that the person “had stopped taking their medication”. But why? Why do people who know that they will become very unwell without medication, stop taking it?

The reasons are probably many and varied, but some of the most common reasons can be:

• Once a person feels well they may wonder if they need medication anymore. Is it unreasonable to think this way? Obviously not, which is why in recent years doctors have felt it necessary to stress the importance of finishing any course of antibiotics – even if you feel well. I think it’s a common mistake that people with a variety of illnesses make, and not one to be judged.

Sometimes well meaning friends or relatives can be unhelpful in this regard, suggesting that the person doesn’t appear to have anything wrong with them and that maybe they just need to “try harder”. Such comments can create doubt in a person’s mind as to why they rely on medication. Of course, they appear well because they are on medication.

• Sometimes there are still residual symptoms such as hearing voices, even with medication. Extra stress can make the voices worsen and they may tell the person to stop taking the medication. It’s easy for us to say “Just say no!” but voices can be very persistent and wear a person down over time. This is something that this experience helped me to understand.

• Another reason is that a person may simply forget to take their medication, and once a dose or two has been forgotten they can very quickly begin to lose insight and to doubt that what they are experiencing is part of an illness, leading to the person missing further doses.

• There are other situations where missing a dose or two is unavoidable. Believe it or not, we had problems with medical staff recognising the importance of Mr Man not missing any doses whilst he was in hospital overnight for a minor operation. One excuse was that pharmacy wouldn’t dispense it, even though he had taken his medication in with him. Another excuse was that he was asleep when they were doing their ward rounds. So wake him up! They wouldn’t let other patients miss antibiotics or insulin would they? Thankfully he didn’t miss two doses in a row, as he was taking Clozaril at the time and as mentioned previously, he would have been unable to resume his usual dose if he had. But for some, this disruption in medication can result in an individual losing insight and not resuming their usual medication regime once they return home.

• You know what? Sometimes people just get sick of taking medication, and who wouldn’t? Sometimes people with Schizophrenia have to take an unbelievable amount of medication with unimaginable side effects. No other person suffering from any other kind of illness would be expected to put up with such side effects, with the exception of those suffering from life threatening illnesses such as Cancer. Do you think I’m exaggerating?

Some of the worst side effects that Mr Man has suffered from include:

* Vomiting. Not just once or twice at the beginning of treatment, but every morning, for months, and often so sudden that he didn’t even get out of bed in time.

* Diarrhoea. Again, severe and sudden. Not able to get to the toilet in time and sometimes not even out of bed in time.

* Drooling, drowsiness, and slurred speech are probably the side effects that give people the impression that people with mental illness are mentally impaired in some way and unable to function normally. These are effects of medication though, and as with Stroke victims the person is still well aware of what is going on around them. Drooling at night can be excessive and result in saturated pillows. Strangely, although suffering from drooling, the person can also suffer from a dry mouth at the same time – not just excessive thirst, but a throat so dry that one cannot swallow their food properly. I’ve lost count of the amount of times I actually thought Mr Man would choke to death during dinner, or he began vomiting because of food stuck in his throat.

* Bed wetting. At one time Mr Man was wetting the bed up to four times a night due to his medication, but then he was in bed more than usual as well – sleeping up to 20 hours a day/night. Medication can make a person excessively tired and sleepy, and make them unable to think clearly when they are awake.

* Jerky movements and twitching. This has resulted in Mr Man dropping cups and plates, falling down stairs, and stumbling into the path of moving traffic. One time we were in a restaurant and his arm jerked suddenly whilst he was cutting his food and his plate went flying across the room!

* Shaking. Being unable to even write with a pen.

* Nightmares every night, so real and so frightening that they caused him to shout in his sleep and wake sobbing.

* The final straw for Mr Man was the excessive weight gain – the kind that cannot be controlled through diet and exercise. Anti-psychotic medications can interfere with the body’s metabolism and cause weight gain and high cholesterol, which of course increases the person’s risk of diabetes and heart disease.

* These medications can also cause infertility in men (I don’t know about women) and I recall Seaneen reporting hair loss due to one of her medications.

The list goes on and on. How would you feel about taking these medications? Can you imagine suffering all of these side effects at the same time? How many other illnesses require medication that makes the patient feel so ill and in fact, in the long term reduces their life expectancy?

But why stop taking medication without discussing other options with the doctor first?

In Mr Mans case, taking Clozaril appeared to be the most affective drug for him – it’s only when he started taking Clozaril that he began to gain insight into his illness. He felt that if he tried to explain that he didn’t want to take it anymore he would be criticised for his decision and forced to take it anyway. I suppose that is no surprise – that is what past experiences had taught him. Thankfully Mr Man has a very understanding and supportive psychiatrist now, who encourages Mr Man to take an active and informed role in the choice of treatments he is given, but this isn’t the case for everyone and many fear a hospital admission if they refuse to comply.

So what is the answer?

Clearly patients need to be properly supported if they are struggling to cope with a medication regime, whether that is because the voices are telling them not to take it, or simply because they need help to remember which tablets to take at which time. Some patients find it beneficial to have their drugs administered through an injection, so that they don't have to worry about taking tablets each day.

It may not be possible to eliminate all side effects, but those prescribing medication can take steps to help reduce them. Each medication has a therapeutic level – beyond that dose the medication won’t become more effective but side effects will increase. The doctor needs to find that level, which can be difficult because it’s likely to be different in each person. They don’t have to grope completely in the dark though – for Clozaril at least, the doctor can determine if the therapeutic level has been reached through a blood test. (I don’t know if this is the case for other medications – maybe someone in the know could help me out with this?)

Even without the benefit of knowing the therapeutic dose for each medication, a doctor can help to reduce the side effects by combining medications. Of course a good knowledge of which medications work well together is important. How does this help? Each medication works differently and has different side effects, but hopefully produces the same result; therefore, lower doses of two different anti-psychotic medications will hopefully work just as well but with fewer side effects than a high dose of one drug.

Other therapies can also be used in conjunction with medication, which again would hopefully reduce the need for higher doses. CBT seems to be working quite well for Mr Man at the moment, and the value of taking part in hobbies that he enjoys has been immeasurable. It took time to reach a level of health where these other interventions were of use to Mr Man, but it was worth persisting.

In conclusion, I would say that it is a mistake to demonise patients who stop taking their medication - rather, I would like to know what measures were set in place to encourage or help them to continue.

Fundamentals of Mental Health Nursing

2009-02-13T17:57:00.004Z

Today I received my copy of the new book "Fundamentals of Mental Health Nursing", edited by Victoria Clarke and Andrew Walsh, and published by Oxford University Press.

About the book
The cover of the book reveals that it "Covers all the core topics in [the] pre-registration nursing curricular" and that it is an "Innovative patient-centred and case-based approach to Mental Health Nursing".

Written primarily by mental health nurses, it is intended as an introductory text for students studying to become mental health nurses. Rather than being a text book full of information for the student to memorise, it uses real life and fictional scenario's to explain how nursing skills can be applied, and to enable the student to develop their own skills.

The book includes sample care plans, references, recommended further reading, and useful web addresses, as well as experiences from real "service users" and carers. It also comes with a free online resource centre, providing video clips to demonstrate the application of theory, quizzes, an interactive glossary, and sample CV's.

Apart from the fact that it contains a full page experience written by me (woohoo!), the book smells nice, which I think is a perfectly logical reason to buy the book. Oh, and the fact that if you're studying mental health it will probably help with that as well. I also think it may be a useful tool for anyone who is caring for a "service user" for many reasons, not least of all because it explains various jargon and contains many links to the websites of organisations that offer support for both sufferers and carers. Although not an avid reader, I will try to work my way through this book, inhaling each page as I go. The discussion points are likely to raise interesting topics for blog posts.

About the editors
Victoria has worked as a mental health nurse for 26 years, and within nurse education for the past 17 years. Her current post is Head of Division/Director of Quality (Mental Health) at Birmingham City University.

Andrew is a senior lecturer at Birmingham City University where he teaches pre-registration mental health nurses. He previously spent over 20 years working in a variety of mental health care settings. I don't know why, but I always imagined him to be younger than that. Anyway, he seems to be a very nice man and he also contributes to a fairly new mental health nursing blog as well as writing his own hobby blog about Tudor history, although I'm sure he's not that old! I'm not sure if the mental health blog will be as punchy as Mental Nurse in it's approach, but if you pop along you may find a bourbon biscuit or two.

Some Updates

2009-02-06T18:25:00.006Z

After looking back through my posts I realise I haven't provided an update since July! Where does all the time go?

Back in July I had written that after nearly five years of taking Clozaril, Mr Man had stopped taking this medication suddenly and without warning, because he had had enough of the side effects. Once I realised what had happened he needed to have his Abilify increased and was also prescribed Quetiapine.

He remained on Quetiapine for about six weeks, until he finally decided he'd had enough of those side effects too. At least he made his intentions known this time, and actually, I thought it was good to see that he had a new found confidence and was taking control of how he wanted to be treated. His refusal to take these medications was in no way fuelled by any delusions, which is what distinguished these events from previous ones. He was able to reason logically and although recognising that he needed medication, he didn't want to take these particular ones.

He continued to do really well on Abilify alone, and the change in him was amazing. For all those years he had taken Clozaril, and we believed this was the best medication for him, and yet we didn't realise just how ill it was making him. Once he stopped taking the Clozaril the voices worsened slightly, but he felt - and still does - that the benefits far outweighed the slight worsening of symptoms. I will write more about this in depth next time, as I feel that people greatly underestimate just what mental health patients have to go through as regards these side effects, and then criticise them for ceasing medication.

Due to the worsening of the voices it was decided that now would be a good time to begin CBT, specifically to help Mr Man to cope with them. I think this was a good time for Mr Man, because although the voices had worsened, his insight was still good and he was thinking much clearer. I'm not sure if this would have benefited him when he was delusional as the focus is very much on questioning the voices and answering back.

He was still uncomfortable with the idea of having to see a psychologist, which of course would have been another new person involved in his care, so his Occupational Therapist, Sandra, has taken on the task. I must say, although we were unsure of her at the start, she has been very supportive of Mr Man over the past six months. Mr Man has felt able to open up to her and feels that she really understands - so rare, yet so important. She has also looked into things for him that he is interested in doing which he would never have been able to cope with before, such as taking exams for example.

So, that is the update so far. Although we have to continue to maintain a balance of what Mr Man can cope with, he is doing much better than previously, especially as he is more mentally alert and able to occupy himself. He even coped with going to a gathering of my family over the holidays, which he was actually looking forward to! I can't even remember how many years it has been since that has happened! Eight maybe? He was a little worried that the kids would be shy of him but they played with him as easily as if they had seen him every week.

So things are definitely looking up. And I have even begun watering my plants again, which apparently is a sign that my depression is lifting!

I will post more soon on side effects and other reasons why people stop taking their medications, and the huge changes in Mr Man since he stopped taking Clozaril.

CBT to be used in Schools

2009-01-24T02:11:00.004Z

Firstly, let me apologise to anyone who is waiting for a reply to an email or a blog comment - I will reply, I just can't say when at the moment.

I've read in the news tonight/this morning (depending on if you have slept yet or not, which I haven't) that the government is to fund a trial of CBT in schools in Bath, Bristol, Nottingham, and Swindon. Although some may doubt the effectiveness of CBT, this to me seems to be a positive step forward for many reasons:

The pupils will fill in a questionnaire to assess their mood and to pick up on any signs of depression. For many youths, this means they may get help a lot sooner than they would normally.
It also removes from them the daunting task of having to ask for help.
Hopefully it will mean that depression will be discussed openly and become less stigmatised.
It may even lead to early recognition of other, more serious, mental illnesses.
If group CBT is successful, that's obviously a good thing. And it could teach youths valuable coping strategies for the future.
If later questionnaires prove that the CBT has been unhelpful for some, then I presume they would be referred for other forms of treatment - again, possibly earlier than they would have been normally.

And we all know that early treatment often means better success rates.

Whether they decide that CBT is an effective treatment or not, I hope questionnaires and discussions about depression and other mental health problems continues in schools. Surely this can only be a good thing? What are your views?

Full news report here.

I Can't Think of an Apt Title Either...

2008-12-17T15:22:00.005Z

I really don't know if I should link to this post or just try to forget that I ever read it or that it was even written. I can't bring myself to reproduce it in full on this blog.

*Mr Mans Wife stares at the screen for a while wondering what to write*

Umm... so here's the link.

Edit: Seaneen over at Pole to Polar has covered this topic too, and she has come up with a great title!

Still

2008-12-11T02:53:00.002Z

It's been five years this month since the last time Mr Man was in hospital. Over those years Mr Man has gradually improved and there are things he can cope with now that he couldn't cope with back then - simple things, like answering the door when someone knocks. He still has his off days, but he seems to have improved even more since he stopped taking his Clozaril and had his Abilify increased back in July, simply because he is more able to occupy his mind now that he doesn't feel so drugged.

He's not been feeling very good for the past couple of days though. He tries to carry on as normal if he has plans to go somewhere, but the rest of the time he tends to sleep more to try to escape the voices.

Tonight I heard him moving around in the bathroom more than usual. Despite the fact that it has been five years since he last cut himself, I found myself rushing up the stairs to make sure he was alright. I still worry that this will happen, even after all this time. Will I ever be able to let go of the trauma of the past?

Blog Awards Day - Way Overdue

2008-12-04T02:55:00.008Z

I'm so sorry to all those who have given me awards in recent (or not so recent) months that I haven't responded promptly. I want you to know that my lack of response in no way indicates a lack of appreciation for these. I appreciate the awards very much, the most recent of which was the Kreativ Blogger Award, given to me by Barbara from In Sickness and In Health, a blog about couples dealing with illness. Thank you Barbara! Isn't it beautiful?

So apparently now I have to list six things that I am happy about before passing this on to six other bloggers. Blimey, six things to be happy about? That's a lot! Let me see...

1. I am definitely happy that Mr Man is still alive, recovering, and keeping himself busy and happy with various hobbies. (Does that count as three? :D )
2. I am also happy that I have found some hobbies that I enjoy and that help to bring me peace.
3. I am happy that my Mum is trying to give up smoking.
4. I am happy that my brother is recovering from alcoholism.
5. I am happy that my sister has conquered her drug addiction and has returned to being the caring and generous spirit that she always was.
6. Seeing my nieces and nephews always makes me happy, but I am happy to see that some of them want to share hobbies with Mr Man and I.

There, that wasn't so hard was it? I think the hard bit will be nominating six others, since I haven't been blog reading for quite a while and although I think all my usual suspects are deserving (Gadget, Seaneen and Mental Nurse for example), it's not very kreativ for me to keep awarding the same people is it?

Despite this, I would like to award Inspector Gadget, Seaneen and Mental Nurse. Gadget and Seaneen for their creative writing abilities, and Mental Nurse for their creative ideas for posts, such as caption competitions, weekly round ups of mental health blogs, and their quirky polls. I'm sure there are many many others who are equally as deserving but I just don't come out of my bubble that often to read them these days.

A long, long time ago I was awarded the Inspirational Blogger Award by Anonymous Mom over at Tenuous at Best. Yeah ok, I know it was over a year ago, but it's mine and I'm taking it!

It's inspiring to me to know that I inspire or move others, so I would actually like to award this to Anonymous Mom and all the readers, bloggers or otherwise, who leave comments or send me emails regarding my blog. I'd like to say a big thank you to all of these ones for inspiring me to keep going.

Additionally, I would like to award Tom Reynolds from Random Acts of Reality as his was the first blog I ever read and he inspired me to write my own. So without his blog, this blog probably wouldn't exist! Also, I would like to award Philippa King, whose art has moved and inspired me beyond belief. Thank you Philippa, and Tom.

So, I think that's it for now, although I do have a few memes to respond to...

Over Sensitive

2008-11-17T01:53:00.005Z

Y'know, these days I have to be really careful about what I read or even what I watch on TV. I know some would say I am over sensitive, but reading or watching the wrong thing can (and does) send my mood plummeting. I'm not always sure what "the wrong thing" is to be honest. Injustice of any kind, I think. Watching a crime drama about a doctor who causes someones death and then covers it up and gets away with it is definitely "the wrong thing" for me.

When Mr Man was in hospital for the third time in 2003 one of the patients died. It was widely believed that the doctor had assessed the patient and decided that she was well enough to go home with her husband for the weekend, but then she killed herself. An easy mistake. If someone is determined enough (and pretty good at acting) it is possible that they could fool the doctor into believing that they are starting to make a recovery. It was a tragedy.

But, what actually happened was that the patient was on "level 3 obs" as they called it - she was supposed to have been checked every 15 minutes to make sure she was safe. She wasn't on home leave at all. During the inquest it was explained that the hospital was regularly under-staffed, making such observations difficult. The ward had two floors, with numerous exit points, which increased the difficulty further.

Actually, the truth is that at night the patients weren't allowed downstairs, and in the day the patients weren't allowed upstairs and their rooms were locked. It was impossible to leave the ward from the first floor anyway - all of the windows had bars across them on the outside, preventing them from opening more than a few inches. On the ground floor there were only two exit points, one of which was directly next to the office. In fact you couldn't walk in or out of the exit without being seen by whomever was in the office. So how did this patient manage to leave the ward?

It was nearly four years before the truth was finally established, that the patient's notes were falsified and recorded that she had been checked on - a full half hour after CCTV footage showed her committing suicide elsewhere in the town. She was missing for four hours before anyone noticed. The notes were falsified by the nurse whom I had witnessed on numerous occasions playing computer games in the office. Obviously the nurses were very busy because they were so under-staffed.

It makes me wonder what we would have found out if the case of Mr Man's attempted suicide on the ward a year earlier was fully investigated. Of course, it never was investigated because... well, he didn't die did he? So that made everything ok. That's what I was continually told anyway. I did meet with the Medical Director, to discuss this and other issues, and I was assured that Mr Man had been checked every 15 minutes, so the staff had done all they could to prevent it - it was in his notes so it must be true.

I know it’s coming

2008-10-03T18:21:00.005Z

Some of this post has been deleted

Just like before
There’s a black dog
That scratches my door
He’s been growling my name and saying
You better get to running

It's been an extremely difficult year for my dear friend Philippa. Please give her lots of hugs and/or visit her blog to show her you care.

*HUGS* TOTAL!
give Philippa more *HUGS*

And whilst we're on the subject of Ignorance...

2008-09-19T21:18:00.010Z

I recently attended a very boring and yet equally as interesting meeting for teachers involved in adult education. It was a compulsory thing for my friend, and I went along as her chauffer. There was much emphasis on completing paper work and carrying out risk assessments – if you’ve worked in education (or any public sector) you’ll know what I’m talking about. Before you ask, the buffet was naff.

There was a panel of various key figures who took it in turns to give a little introduction of their roles in the education service, followed by the usual “if you have any questions come and see me later” and “my number is in this leaflet” whilst waving bits of paper in the air. And then a lady stood up and said: “My name is Josephine Bloggs and my role is to make sure that adult education is accessible to people with physical disabilities or mental health problems”. That’s when the evening became interesting. She said that teachers obviously know about their own subject, but need to be taught how to cater for the needs of such ones.

Raising awareness in this way is something I would quite like to do – explaining what mental illness is and isn’t, a few do’s and don’ts, and how best to be supportive, that kind of thing – after all, they’re not training to become mental health nurses, so a lesson in biology is probably not required! I enquired about it later in the evening and although I was told that the CPT would be handling it, the lady took my number to pass on to another lady who would be directly involved in this. During our discussion there were a few points that sounded a little odd to me, and when/if the lady calls me I shall no doubt be asking for some clarification.

Firstly, I got the impression that there were specific courses for people with mental health problems, such as painting, dancing, yoga, “subjects that are therapeutic” as the lady put it. Are they suggesting that people with mental health problems can only benefit from “therapeutic” subjects and not academic ones? Do they assume that people with mental illness do not have the mental capacity to learn something more challenging?

Secondly, why are people with mental health problems being segregated by being given their own courses? Aren’t they just ordinary people like you and I?

Thirdly, I was told that one way I could help was by being a “buddy” for a mentally ill student. Please tell me that this is not a paid role. Do they think they need to enrol people to be friends with those with mental illness? How is the person expected to gain confidence in their own social skills if “buddies” are provided? How would you feel if you were assigned a “buddy”? Wouldn't you feel like they were saying “You're so awful no one will like you so we've asked someone to be your friend”?

These courses are designed for people with “mild to moderate” mental health problems. I have read that Schizophrenia is the most severe form of mental illness. So if this is how they view “mild to moderate” sufferers of mental illness, they must think Mr Man is a complete cabbage! So let me just clarify a few things about Mr Man…

His table tennis skills are improving all the time, which is one of the fastest thinking sports there is. He’d now like to train to become a coach.

He is very proficient in web design and computer programming, being able to program in at least 10 different programming and scripting languages, flash animations, and other things that I can’t even explain to you because I don’t understand it – all self taught.

He has an amazing comprehension of various forms of mathematics which I have never even heard of – again all self taught. He even created his own mathematical formula to work out the day of the week of any given date in history or in the future - which he can calculate in his head.

He has composed hundreds of pieces of music of many different styles.

Believe it or not he’s even made some new friends all by himself.

My teacher friend pointed out to me that although there are specific courses for people with mental health problems, anyone can enrol on any course. This is true, but only the teachers who are teaching the “therapeutic” courses specifically for the mentally ill are being trained to cater for the needs of those with mental illness - the other tutors merely received an information leaflet that was so general that it could apply to almost anyone whether they suffered from a mental illness or not. Who’s to say what is therapeutic? Yes, I would love to paint and dance and let the wind blow through my hair, but these things are not relaxing or therapeutic to Mr Man. (For those things, please see the list above)

I realise that not every person who suffers from a mental illness is like Mr Man, but I just feel the whole scheme is patronising at the very least. It would be much better for all teachers to be better educated about mental health issues as part of a national or even global campaign to reduce ignorance and stigma, and to start treating those with mental illness as ordinary people living with extraordinary illnesses, rather than continuing prejudice by treating them as something subhuman under the guise of being politically correct.

Still, it ticks all the right boxes so that they can receive their government funding.

Thank you to Mr Ian for providing this link for Mental Health First Aid.

Ignorance Breeds Ignorance

2008-09-07T23:40:00.005Z

The BBC reports that in a study of 500 young people conducted by Great Ormond Street Hospital, almost half could not name a single mental health condition. Dr Jon Goldin, a consultant child and adolescent psychiatrist at Great Ormond Street, said the results were both worrying and surprising. But are they? Are the results really that much of a surprise?

I confess; before it was suggested to me that Mr Man may be suffering from Schizophrenia, which in turn led to my own research, I had no idea what Schizophrenia was. Like most people I think I thought it was a split personality – I had no idea about delusions or hallucinations. Lack of knowledge probably explains the strange reactions I have had from others once they have realised my “plight”.

Ignorance is rife at all ages. No wonder then that many of the Google searches that lead to my blog are strange questions such as: “is a schizophrenic capable of love?”

Dr Jon Goldin continues: “This ignorance is probably one of the reasons why for too long now there has been a stigma attached to living with a mental health condition.” And I couldn’t agree more. People living with mental health problems are presumed to be unpredictable, violent, aggressive; you name it – anything other than ordinary people living with an illness, and these beliefs are largely fed by various types of media. How many people ask the question: “Is a person with Multiple Sclerosis capable of love?”? Or “Are people with Cancer violent?”? How many times do we see the headline “Murderer was Dyslexic”? Never. Does this mean that people with Dyslexia don’t commit murder? Of course not, but we wouldn’t dare stigmatise these people in such a way.

It is admirable that Great Ormond Street is responding to this need of information by adding a new section to their website Children First, dealing with mental health issues; but just as with this blog, I fear that only those who have an interest in mental health issues will access that area of the site, and believe it or not, there are still some children without internet access or the privacy to read information on such a sensitive issue.

Young people are often influenced by the attitudes of their parents and teachers before they reach their teens, and prejudices can already be ingrained by then. There needs to be more education for the general public and especially for parents and those who work with young people – firstly to avoid passing on such prejudices, and secondly because mental illness often first develops in adolescence and needs to be recognised for what it is. Mr Mans illness remained undetected throughout his teens, as his depressive behaviour was dismissed as being “normal teenage” behaviour.

No, there is no surprise at the lack of knowledge about mental illness by young people. Ignorance breeds stigma and further ignorance. Only knowledge breeds understanding and acceptance.

Sectioned

2008-08-20T23:24:00.004Z

September 2003

If you have been following our story in order this is quite a jump forward in time, but the subject of having a loved one detained under a section of the Mental Health Act is one that has been discussed recently, but not in depth. This was our experience.

It was a Sunday morning. I awoke earlier than usual, not having slept very well after being woken during the night by Mr Man repeatedly banging his head on the pillow in an attempt to get the voices to stop. He had been discharged from hospital five months earlier, but the medication he was taking seemed to have less and less effect on his symptoms as time went on. It had been decided some months previously that Mr Man would be admitted into hospital to start treatment of Clozaril, but he was still on the waiting list for “the Clozaril bed”.

Despite a growing history of self harm, suicide attempts, and psychosis, Mr Man still had no Care Plan in place, no CPN, and no Care Co-ordinator. We “coped” alone. Earlier that week the strain had become too much for me and I had resorted to alcohol, just to experience one night without the worry and the emotional pain of watching Mr Man suffer. Not being a regular drinker, when I wanted to repeat the experience two days later I realised I wasn’t coping.

Without a support system in place, when I realised how bad the voices were getting I didn’t know what else to do except call the usual “out of hours” Doctors surgery. I explained that Mr Man was waiting to be admitted for treatment with Clozaril, but that in the mean time his condition was deteriorating quite badly. The Doctor agreed that I should bring him in to be seen.

The problem was that although Mr Man had previously agreed to go into hospital to start his treatment of Clozaril, whilst waiting to be admitted his symptoms had deteriorated to the point that now he was confused as to whether he was really ill or not. Mr Man refused to get up. To begin with I thought this was merely part of the ongoing problem I had with getting Mr Man to do anything, because of the negative symptoms of his Schizophrenia. I called the surgery to explain. I was sure that the Doctor wouldn’t understand and would think I was wasting his time; after all, that was the response I was used to from Psychiatrists and Psychiatric Nurses, so I didn’t expect much from a GP, but he suggested I try again. Mr Man still wouldn’t get up, but this time it became clear to me that it was because he didn’t want to be seen by a Doctor, rather than just not wanting to get up. This worried me even more because I knew from experience that once Mr Man had lost the insight that he was ill his delusions would take hold and there would be no reasoning with him. I called the surgery again to cancel the appointment. I was embarrassed that I had called the surgery for an appointment and now Mr Man was refusing to go, and I felt so helpless. The Doctor must have discerned the anxiety in my voice and he threw me a line.

“Are you saying he is refusing to be seen by a Doctor?” Something in the tone of his voice told me what he was thinking.
“Yes” I replied.
“Are you concerned that he could be a danger to himself?” he asked.
“Yes” I replied, and I went on to explain that that was why I was so worried; because the voices were worsening and they often tell him to harm himself.

I was so relieved and so grateful when he said he would arrange a home visit for Mr Man to be assessed. Mr Man was a bit sulky with me about that, but once the Doctor arrived he agreed to go down stairs to be seen by him. After discussing his symptoms with him, the Doctor asked Mr Man if he would go into hospital voluntarily, but he refused. The Doctor asked me if I agreed that Mr Man needed to go into hospital, and I did, so arrangements were made for a Psychiatrist and a Social Worker to attend.

Mr Mans mother visited us that day, which had been pre-arranged earlier in the week. She was obviously confused by the presence of strangers in our home, so I took her into the kitchen and explained what was happening. She was overcome with emotion at the thought of her son being taken into hospital against his will, but for me – as someone who had needed to hide knives and blades, and constantly reassure Mr Man that he doesn’t have to slice himself open when the voices tell him to, and that no harm will come to him or me for not doing it – having him “sectioned” seemed far less traumatic than the thought of his condition deteriorating further.

The lesser of two evils?

"Sectioned Lady" by Philippa King

The whole process was very drawn out with much waiting around, firstly for the appropriate people to attend and then for an ambulance to take Mr Man to the hospital, which wasn’t really necessary but apparently required by law. From the time I called the surgery to the time Mr Man was finally admitted took about 12 hours. During that time Mr Man was anxious but quiet. He didn’t argue, and he didn’t struggle. He was resolute that he didn’t want to go to hospital, but he seemed to have resigned himself to the fact that he would have to. The Social Worker was very chatty and friendly, and even managed to get a smile out of Mr Man a couple of times. There was no drama, and apart from that edgy feeling of expectation when you’re waiting for something to happen, the day was quite boring. I was relieved when the day was over and Mr Man was safely on the ward, although leaving him on the ward was never easy for me. I could never quite decide which was the lesser of the two evils.

I’m not sure if I had Mr Man admitted for his own safety or my own sanity, but it prevented him from having to wait many more months before starting his treatment of Clozaril – the first medication to really make a marked improvement on his symptoms.

Updates

2008-07-18T00:12:00.005Z

Thank you to everyone who has asked how Mr Man is doing. I’m sorry to have kept everyone waiting so long for an update; since the weekend I seem to have swung from being mentally very alert and hardly sleeping, to feeling like a zombie and sleeping at every available opportunity. I expect this is a normal reaction to stress, and my sleep patterns seem to be governed by the perceived level of need from Mr Man – now that he is sleeping more soundly, I am too.

Dr Hillary was able to go back into work on Monday afternoon, and she obviously felt that seeing Mr Man was more of an emergency than whoever had spoken to the receptionist that morning, as she called to say that she would come for a home visit after 5pm that day.

It was important for her to establish why Mr Man had stopped taking his medication, as this would have a bearing on which direction her care would take. She was happy to find that it wasn’t due to any loss of insight, or command hallucinations, but because Mr Man had simply had enough of the side effects (I will write more about this soon). She was also concerned that Mr Man could be suffering from rebound psychosis after stopping his Clozaril so abruptly, but again, was happy to note that this didn’t seem to be the case.

Actually, I have been very surprised that Mr Man’s symptoms have not deteriorated as much as they have in the past. I suspect that the Abilify he takes has helped him far more than anyone realised. About four years ago Mr Man skipped some Clozaril, hoping to control some of his side effects, and at that time he became very ill, very quickly. He was careful not to skip more than one dose at a time so that he wouldn’t have to be reintroduced to the drug (which is when the side effects are at their worst), but within days he was sitting right up close to the TV, with a note pad and pen in hand, insisting he had to write down “codes” from the commercials for “the company”.

At that time he was also taking Risperidone, but the worsening of his symptoms without the Clozaril was dramatic. This could lead some to conclude that maybe the Risperidone wasn’t really up to the task, but it’s interesting to note that when the Risperidone was reduced before the introduction of Abilify, there was a marked deterioration in his symptoms then as well, even though he was still taking Clozaril. This is why I say that the Abilify has obviously helped Mr Man more than anyone realised, as it really seems to have kept him afloat this time. I can’t help wondering if some of Mr Mans current psychosis is in fact rebound from stopping the Clozaril abruptly, and I wonder if he would have managed on Abilify alone if the Clozaril was reduced gradually and the Abilify increased slightly. Perhaps we’ll never know.

Of course, from Mr Man's point of view he's not doing very well at all - the voices have worsened, his anxiety is worse, and he is struggling to "hold it together" as he put it. I've no doubt of the internal struggle he is having to remind himself of what is real and what is not, and I know that when the voices worsen it becomes very distressing for him, but he hasn't lost his insight and become completely delusional so from my point of view he is doing very well. He even spent some time in his studio this evening. I still keep running up the stairs every time I think I can hear him in the bathroom though, so deep down I know the potential for further deterioration in his symptoms is there.

Dr Hillary praised my good sense (her words) to increase Mr Mans Abilify over the weekend and has decided to keep the dose at the increased level of 15mg instead of 10mg. She didn’t want Mr Man to continue relying on Diazepam for sleep though, because of its addictive nature, so after also noting Mr Mans heightened anxiety (he was shaking from head to toe), she prescribed him Quetiapine, also known as Seroquel. Quetiapine has a sedative effect and is sometimes used for the treatment of sleep and anxiety disorders, although it is primarily an anti-psychotic medication. So hopefully it will cure everything! So far it seems to have had the desired effect – we’re both sleeping better and I’m not even the one taking it!

On a Lighter Note

After researching Quetiapine on the internet I discovered that it is highly sought after by inmates in US prisons, referred to as “Suzie Q”. I told Mr Man that if he decides to cut out his medication again to give these ones to me instead of throwing them away – I might be able to sell 'em!

And Hannah, from Coloured Mind and Scattered Thoughts, raised an interesting point in the comments section about crisis teams and early intervention. Dr Hillary mentioned this during her visit. She said if we wanted to be referred to the crisis team we should let her know before Thursday. It seems one actually has to be referred to a crisis intervention team before they can intervene, which really isn’t any use if you’re suddenly having a crisis out of the blue, is it?

The Question of Emergency

2008-07-14T09:23:00.001Z

I called our local Community Mental Health Team this morning to book an emergency appointment with Dr Hillary. Unfortunately she wasn’t at work today as she was having an emergency of her own, and Mr Man was refusing to see anyone else. Additionally, Mr Man has decided that he doesn’t want to start taking Clozaril again (which I will write about later). His Care Co-ordinator is on holiday, so the receptionist put us on hold while she spoke to a nurse.

She came back and explained that there “isn’t a real emergency” so Mr Man could come in and see Dr Hillary on Wednesday.

I accept that there are unavoidable circumstances which mean that Dr Hillary can’t be magically brought into work in a puff of smoke, but it’s that phrase “isn’t a real emergency” that bothers me – as if I’m being accused of overreacting again. I suppose she’s right; Mr Man hasn’t chopped his own head off and he hasn’t been running up and down the street naked screaming blue murder (subject to change). But really, those are the kind of emergencies where I would be looking for an immediate assessment to have him admitted into hospital, and it wouldn’t matter which doctor he saw. This situation is an emergency to us because we want to avoid a hospital admission.

Admittedly, Mr Man’s symptoms haven’t deteriorated as quickly as they have in the past when he has skipped some medication, although I suspect he is keeping much of it to himself and he is sleeping most of it away with the aid of Diazepam. If they had, I would be much more worried about him than I am. Still, I won’t be leaving him at home alone any time soon, to avoid any real emergencies.

Best Laid Plans

2008-07-13T11:56:00.005Z

Mr Man saw his psychiatrist, Dr Hillary, recently. We discussed the worsening of the voices, and also an interesting symptom which he has not admitted to previously – his auditory hallucinations actually include hearing music. Obviously this is not a symptom that is bothersome to him, and the music that he composes is a recreation of what he hears. This takes us back to the subject of psychosis and creativity, and raises the important question of how or how much of these symptoms need to be controlled.

For the most part Mr Man has been coping very well with the level of symptoms he currently experiences. It’s probably not what most people would call a “normal” life, as there are still many areas that cause him problems, but compared to just a couple of years ago his quality of life has improved dramatically. He regularly plays table tennis and has been able to interact with other players and form new friendships, albeit not close ones. He also composes music, writes computer programs, and designs websites.

Obviously increasing medication would greatly impact on his ability to carry out these activities due to the side effects of drowsiness and lack of concentration. As Mr Man said himself “I don’t want the music to stop”, and yet some of his symptoms are still distressing to him. For this reason it was decided that now would be a good time to refer Mr Man to a psychologist who specialises in psychosis, so that he can help Mr Man to learn how to “talk back” to the voices. I feel this is an important step, and now would be the ideal time; Mr Man has good insight into his illness, and has been progressing steadily.

However, I fear these plans are about to be put on hold for a while – Saturday evening I discovered that Mr Man has not been taking his medication.

I had noticed over the last few days that Mr Man’s anxiety had been increasing. By Saturday afternoon he didn’t really know what to do with himself. He was fidgety and felt clammy. He’d sit on the door step and then come in again 10 seconds later. He was feeling hot then cold. He also had this very strange look in his eyes that I had not seen before. His eyes were wide with a “crazed” look – I’m sure to others it would have seemed quite scary. I put it down to the anxiety. Thankfully we still had some Diazepam left from when he was prescribed it previously. It settled him for a while, but later that evening he became very negative about life and everything in it.

As I gave him a reassuring cuddle I asked him: “How come you’ve been feeling so poorly just lately? Have you missed some of your tablets?” He avoided eye contact but nodded to confirm that he had.

At a time like this, establishing and maintaining open and honest communication is essential. A person suffering from psychosis will already be feeling confused and anxious because of the voices, so no matter how scary or shocking, I always try to be supportive and never react emotionally to anything that Mr Man tells me, as this would only raise his anxiety further and possibly make him feel that he can’t confide in me. I say this, not to make myself sound amazing, but because it is an important factor when dealing with someone who is suffering from psychosis, and yet one that is easily neglected.

“Ok, which ones have you missed” I asked him calmly, still cuddling him. Mr Man started to panic:
“I’m not going back into hospital”
“No, that’s ok; I don’t want you to go into hospital either, but I need to know which tablets you have missed”

He told me it was his Clozaril, also known as Clozapine. I needed to know how many doses he had missed. He kept repeating that he wasn’t going into hospital, and now I realise why he was panicking so much – he had missed too many doses to be able to just go back on to his usual dose. *Please see footnote.

"Missing Clozapine" by Philippa King

We talked for a while and I reassured him that I wouldn’t let anyone take him back into hospital. We made a deal. I promised to keep him out of hospital, but in return he has to be completely honest with me about how he is feeling – I can’t keep him safe unless I know how he is feeling, and if I can’t keep him safe then I can’t keep him out of hospital. We have to work together. He promised, and we shook on it. I know I will have to remind him a few times because his memory will worsen as the voices become more intrusive, but so far I feel confident that we can overcome this together.

In saying that, I had a sleepless night on Saturday night wondering if I really will be able to keep my promise. I couldn’t have done this before, but his symptoms are not new to me anymore. In fact, I think I would cope less if he ended up in hospital again. I’m actually more worried about the side effects of starting his Clozaril again than the worsening of his symptoms. I really don’t think that hospital would help him at the moment, as none of his usual distractions would be available to him. He can’t concentrate on much at the moment, but we are watching an enormous amount of Star Trek and Babylon 5 to help keep his mind occupied!

I called the out of hours doctors surgery on Saturday evening, and they put me in touch with the on-call Psychiatrist. I was keen to start Mr Man back on the Clozaril as soon as possible, but there was no way of being able to get hold of any low dose tablets. He told me I would have to wait until Monday morning and contact Mr Mans usual Psychiatrist. That means another two nights without medication. In the mean time he said I could increase the Abilify that Mr Man takes in the morning, and give him Diazepam for his increased anxiety.

So now we wait until Monday morning. But what makes a person stop taking their medication in the first place? This will be the topic of a post in the near future.

*The problem with Clozaril is that there are some very serious side effects, and so guidelines are very strict. It cannot be prescribed by a GP and high street pharmacies do not stock it. Previously it was licensed solely for the treatment of “treatment resistant Schizophrenia”, although I have read recently that it can also be used for psychosis associated with Parkinson’s Disease.

Patients on Clozaril have to be monitored very closely as it can lower a person’s white blood cell count dramatically, leaving them defenceless against life threatening infections. Due to this and other serious side effects a person is usually admitted into hospital when starting treatment, not to mention the fact that they will probably already be very ill with the symptoms of psychosis. When a person first starts treatment of Clozaril their WBC is tested once a week for six months, and the person is only given one weeks supply of medication at a time. After six months the patients WBC will be tested every two weeks for a further six months, and then every month for the duration that they take the drug.

A starting dose of 12.5mg is gradually increased to a therapeutic dose of between 350 and 600mg. At one time Mr Man was taking 800mg a day, but after a certain level the therapeutic benefits fail to increase whilst the side effects continue to worsen. The correct therapeutic dose will be different for everyone, and can be affected by other medications that are taken. A blood test can be taken to establish the correct dose for each patient. Currently Mr Man has been taking 300mg daily.

The starting dose is exceptionally low as there are other complications associated with taking Clozaril. Suddenly starting on a larger dose can result in coma or cardiac arrest. For this and other reasons, once a person has missed two consecutive doses of Clozaril they have to be reintroduced to the drug with the starting dose of 12.5mg.

Over protective

2008-07-08T11:38:00.007Z

End September 2002 - beginning October 2002

As previously mentioned, the voices have worsened again for Mr Man recently, telling him to cut himself. So far he has managed to resist carrying out their demands, but it’s funny how the fear that he will follow through never completely leaves me.

Most of the knives in our house aren’t very sharp but I do own a craft knife from years ago when I went through a phase of card making, and I keep this well hidden. I needed to use the knife recently and I had to wrack my brain to try to remember where I had hidden it. Mr Man walked in on me as I retrieved it, and it made me jump like a naughty school girl trying to hide a secret. It was still stained with Mr Man’s dried blood from 2002. It was the only time he had ever cut himself at home, and yet I still fear it could happen again.

Mr Man had been in hospital for about 4 months. He was still an inpatient at the Psychiatric hospital but he was at home with me for the evening on home leave. I’ve discussed previously why it was difficult for me to have Mr Man at home on home leave, but equally as difficult to refuse.* Things were really starting to come to a head; I could see that Mr Man’s condition was deteriorating, but the only member of staff who recognised this fact was his primary nurse, who unfortunately didn’t seem to be at work that often, or was working nights. The other staff, including the consultant, was under the illusion that Mr Man wasn’t suffering from psychosis at all and never had, and that he wasn’t a risk to himself either, despite recently having been through several assessments which indicated otherwise.*

Mr Man had cut his arm whilst on the ward two weeks earlier, with razor blades. The poor lad that found him had only just been moved from the Psychiatric Intensive Care Unit to the Acute ward, and had to be taken back to PICU because of the shock. Mr Man was assessed and found to be suffering high levels of psychosis, and was a high suicide risk.* He was placed on level 3 observations, which meant he was checked every 15 minutes – as if it takes longer than 15 minutes to seriously harm yourself. These observations never lasted long anyway; maybe a day or two, and the following week Mr Man’s consultant suggested that Mr Man go home over night for some leave. This caused a huge row between the consultant and Mr Man’s primary nurse, who was the one that carried out the assessments and seemed to be the only person who took Mr Man’s symptoms seriously; not to mention my own ability to cope. She overrode the consultant’s decision, and told Mr Man that for the time being he was only to have a couple of hours home leave at a time, and no overnight stays.*

During those hours I followed him everywhere. I tried not to make it obvious, but whenever he needed the toilet I would find something that I needed to do upstairs. I told the staff I was doing this, in an attempt to get them to understand how worried I was about Mr Man's safety. They told me I was being over protective and that I needed to allow Mr Man to take responsibility for himself. They said I was "hindering his recovery". So on Tuesday 1st October when Mr Man was at home for a couple of hours, I followed their advice and allowed him to go to the toilet alone. I knew it was wrong. It felt wrong. There was something in his face that told me it was wrong. I patiently waited down stairs. When I heard the floorboards creaking I knew he wasn’t sitting on the toilet, so I went upstairs. And that’s when I found him.

He had cut the inside of his forearm lengthways with the craft knife, and was prodding around inside with his fingers. “What are you doing?” I shrieked, as I took the knife out of his hand. He was clearly very distressed. “Please don’t be upset with me, I had to do it. They told me I had to get the aerial out”. It was difficult for me to be a calming influence when inwardly I was panicking. I know now from reading medical blogs that I probably didn’t need to panic quite so much as there was no arterial spurt, but at the time the cuts looked deep, and finding him in such a state was traumatic.

"Cut Out" by Philippa King

I didn’t know what else to do except take him back to the ward. He really didn’t want to go, but I managed to persuade him by explaining that I didn’t know how to dress his wounds and that the nurses would know what to do. I wrapped his arm in a clean tea towel and we made our way back to the ward. The cuts were worse than last time, but he wasn’t monitored under any level of observation this time.

The next two weeks were probably the worst two weeks for both of us, as Mr Man’s symptoms continued to deteriorate, and the staff continued to ignore it, but I will write about that another time.

So when Mr Man says that the voices are telling him to cut himself, I know that the danger is real, although I also know that Mr Man is learning to cope better and resist their demands. I don’t follow him around like I used to, but I still make sure that temptation is hidden out of his way. I don’t hide every knife in the house, and if he really wanted to he could find a way to cut himself, such as with razor blades as he has before. But when just a momentary lapse in his resolve could result in such traumatic circumstances I don’t see the point in unnecessarily leaving very sharp knives in view. I don’t think that is being over protective, do you?

*These points have been discussed previously in the post "Patient rights verses patient safety"

Untitled

2008-07-03T00:40:00.004Z

I just came across this video on Post Secret. Having come so close to losing Mr Man through suicide, it touched me deeply, and I wanted to share it.

The button below can be used to save and/or share the Hopeline website in your favourites.

Updates

2008-06-27T13:57:00.005Z

Some of this post has been deleted

Some time during the winter months Mr Man’s CPN, Mark, had a job change, so now Mr Man has a new Care Co-ordinator; an Occupational Therapist who we will call Sandy.

Being an Occupation Therapist, she wanted to do something practical to help Mr Man with his anxiety. Since he has already been on every anxiety management course imaginable with little or no success, it was decided that she would go for a walk with Mr Man every two weeks to gradually build up his exposure, and to talk him through how he was feeling during the walk. This seemed like a reasonable plan, and she turned up the following week without an appointment as planned; prior notice would have given Mr Man time to worry about it. That was 3 months ago. This could have been a great opportunity for her to establish a relationship with Mr Man, if she had followed through, but since then she has only come to see Mr Man once, with a trainee in tow.

I think the plan was supposed to be that I was to carry on what she had started, as after the first walk she said “Maybe Mrs Man could go out for a walk with you next week?” and since then there has been no mention of her taking another walk with him. This irritates me because on one hand they are very fond of telling me to step back and that Mr Man has to learn not to be so dependant on me alone, and yet on the other hand they expect me to be the one to support him in all of their wonderful plans for him; not to mention the fact that I don’t always have the physical or emotional energy to undertake these endeavours due to my own health problems.

How do I stop the darkness from rolling in, for Mr Man or myself?

"The Darkness Rolling In" by Philippa King

Mr Man would like to start running regularly, to try to lose some of his medication weight, but this is going to be difficult to put into practice. Obviously he doesn’t feel able to run alone, and I really don’t have the health to support him in that way. It would be nice if someone from the Community Mental Health Team could take half an hour out of their day to run with him, but these people don’t want to give you the practical help that you actually need; they prefer to hold “Well Being” classes to just tell you what you should and shouldn’t be doing – if you can overcome your anxiety to get there in the first place of course. I wonder if this is partly due to wanting to maintain a certain amount of professionalism and emotional detachment, or whether they just don’t care enough to do anything even remotely outside their job description.

More recently Mr Man has been experiencing some fluctuations in his symptoms. We expect this from time to time, but when the symptoms are particularly bad there is usually a trigger, such as a stressful situation. No such situation springs to mind, but the voices have been telling Mr Man to cut himself again. More about that in my next post.

Questions From Readers

2008-06-20T12:13:00.010Z

In January I received some questions from a reader, prompted by a post I had written in November 2006. The post was entitled “Blip”, and at that time Mr Man’s medication had been changed, causing a temporary fluctuation in his symptoms. This had led to him believing that many of our friends were spies, and that even his Psychiatrist was “in on it”. You can read the full post here. Below is a portion of my correspondence with the reader, for the benefit of those who may be in a similar situation.

"How do you handle it when Mr Man says things like “she’s in on it”? And how do you handle living with someone who always believes that people are spies? I have fears about when my hubby comes home – how am I going to feel with him always thinking that people are after him? I have a hard time when he thinks I am against him. I don't know how I will react if he is going to say stuff like that throughout the years."

I understand your fears at present. When I first realised that Mr Man was suffering from Schizophrenia I didn't think he would be well ever again. But in time, and usually with medication, things do get better. It can seem slow at times, but then other times you look back and you suddenly realise how far he has come. The key is not to compare to what he was like when he was well, but to compare to what he was like at his worst.

At the time of writing this “blip” post, I didn't actually challenge Mr Mans beliefs too strongly. I think I said something like "Do you remember telling me that you realise these beliefs are part of an illness? When your meds get into your system you won't feel like this anymore" But he didn't remember it, and it seemed to confuse him, so I chose not to challenge it anymore, only reassure him and distract him from those thoughts as much as I could. Dwelling on them definitely doesn't help.

I was aware that I would have to keep a closer eye on him and I made sure he took his medication. Apart from that I tried to carry on as normal. It really did turn out to be just a blip and he didn't need to see his doctor after all. If the symptoms had persisted or had got much worse I would obviously have had to contact his doctor against his will.

Mr Man isn't like this all the time though. Once a person is relatively stable on medication the fluctuations in symptoms aren't usually severe. Also, you do learn to adjust and accept certain things in time.

"His social worker said that if I took over his care, not only will I be the wife but I will have to be the one responsible for him taking his medication, and if he doesn't then I will be the one forcing him into the hospital. So it could strain our marriage. Do you have any experience with this?"

Yes, I have had to make sure that Mr Man takes his medication, and I have also had to have him detained under a section of the Mental Health Act before. Even now, I get Mr Mans medication ready for him, but that's mostly because he would probably forget to take them otherwise! I don't usually have to watch him take them these days, but if he becomes unwell, like in this "blip" post, then I have to watch him take them to make sure he has had them. It's when he starts to doubt that he is ill that he is likely to skip medication, but most of the time he understands that he is ill and needs the tablets. They call this "insight".

We have had problems with this in the past, but communication was the key for us. I always tried to give Mr Man lots of reassurance that I loved him. I knew he didn't believe that he needed the medication but I had to ask him to trust me and I would try to reassure him that I would never make him take anything that would harm him. At times he only took the tablets for me, but at least he took them.

"Trust Me" by Philippa King

It was painful sometimes when I sensed that he was suspicious of me, but I had to remind myself that it was temporary and that as soon as he started to improve he would understand.

For a while it wasn't uncommon for him to ask what each tablet was called and what it was for. Understanding his fear helped me to be patient with him and explain about each medication time and time again. He would especially ask these questions if the chemist had used a different manufacturer that month and the packaging was different or the tablet was a different colour or shape. They really should think of these things shouldn't they?

The day he was admitted under a section of the Mental Health Act was a strange day. Although he had refused to go to the Doctors with me, when the Doctor came to our home he didn't become argumentative at all. He refused to go into hospital voluntarily, but he seemed to just accept the situation when they enforced the section. He didn't seem angry at me either. This was his third admission, and each hospital stay had been a lengthy one. I suppose he knew by that point that I was going to support him as much as I could, just as I had done on both previous occasions. It's different for everyone though.

Hopefully it will never come to that point with you and your husband. It really depends on how much insight he manages to gain through his medication. One thing I would say though (and I'm not suggesting that you would do this) is never lie about anything, even if you think it will protect him. I have always been completely honest with Mr Man about his medication and everything. When our home was broken into he was still in hospital. It would have been easier to not tell him about it, as he thought the burglars were spies, but I knew if I didn't tell him he would lose trust in me when he eventually found out. Maintaining trust is vital.

Austria cellar man 'mentally ill'

2008-05-04T19:44:00.002Z

Stories such as this one infuriate me. Once again we have a lawyer who is paid far too much money to try to find a way of reducing the punishment of a man who has undeniably committed a heinous crime, and the best he can come up with is “he couldn’t help it; he’s mentally ill”.

There’s no getting away from it; some people are just bad and do bad things. People can’t always be excused for what they do. Continually using mental illness as an excuse means that bad people are not being punished adequately for the crimes they commit; the sincerity of those who do commit crime due to mental illness is called into question; and people with mental illness in general are wrongly viewed as people to be feared and avoided, as it appears that there are more people with mental illness committing crime than there actually is.

This has to stop.

Are we going to get to the stage where no crime is punishable? Will every crime be attributed to mental illness? Will all murderers, rapists, and paedophiles be regarded as victims of illness rather than bad people? Where does it end?

New Blog - Bipolar Speaks

2008-04-19T22:44:00.004Z

I received this comment from Bipolar Speaks in the comments section, and thought it was such a wonderful idea that I wanted to make sure that everyone got to read it.

Most of you know me as “Dreamwriter.” I recently launched a new blog called, “Bipolar Speaks.” One day something came over me as I was reading websites called “Post Secret” and also a blog who had a post where they had quotes from other Bloggers with mental illness about how they felt. It occurred to me that WE need an escape to let out our feelings and frustrations. I know that a lot of Bloggers say what they feel within their own blogs, but you are welcome to share your thoughts, opinions, and feelings.

You are welcome to help raise awareness and put a stop to the Stigma that lies within mental illness. We can change the world - one story at a time. I thought it would be interesting to design a “Safe Haven” for those who battle with a Mental Illness; and allow them to come and let out their most darkest, painful, and emotional feelings. This would be a great way to spread awareness by letting society know what is REAL about mental illness.

If you are interested, you can submit a story or short piece as an “Anonymous” contributor, or if you don‘t care about what others think, then feel free to reveal your blogger identity; its purely up to you. I tried this several times and the “Anonymous” button works and ends up in my email as an “Anonymous” comment.

The rules and regulations are in the blog within a post. Take the time to read them thoroughly and I hope that you become a constant contributor. Remember, we all have things on our chest to let out and we all truly don’t want others to know. But now is an opportunity for YOU to speak up, speak out, and be heard! I know that I have a lot of feelings and issues that I don’t want my husband, friends, or family to know about… this is my chance to get it off my chest and I WILL be a constant contributor. Depending on the issue, I might submit the story under both “Anonymous” and my name.

Go to “Bipolar Speaks” and look around, don’t forget to display the Bipolar Speaks button on your blog and link it back to us.

By the way, I still have my other blog, so don’t forget about me over there, too. :)

“Care” in the Community

2008-03-07T05:50:00.003Z

I’m aware that Mental Health workers sometimes read this blog, and some have previously commented that it helps them to see things from a different perspective. So this is a message to all those who provide “Care in the Community”.

Don’t get shirty when a “service user” who can’t even remember to change his underpants doesn’t return your calls. And if he has a spouse who usually takes care of these things for him, take a minute to think about why she might be letting those things slip at the moment.

Sometimes there are more important issues in life than your appointment schedule running at 100% efficiency.

Edit: After making such a fuss last week, she failed to turn up for a scheduled appointment with Mr Man today, and she didn't even call to cancel. Maybe life has taught her a lesson in "more important issues"?

Update on the Respite Saga

2008-02-27T08:23:00.007Z

Head Meets Brick Wall

It’s been a long time since I wrote an update in the Respite Saga. The problems continue, with the addition of brainless staff at the helm, upholding pointless rules.

The local MP was little or no help to me whatsoever. After the helpful MP we had previously I foolishly concluded that all MP’s would want to care for their own constituents. In reality the only thing he did was to forward my letter on to the Chairman of the local NHS Trust and Patricia Hewitt, the then Minister of Health.

Of course Patricia was far too important and busy to look into the matter and respond to my letter, so she then forwarded my complaints on to someone else. Someone else, like most politicians I suspect, was caught up in her own fantasy world of statistics and figures and wrote me a long letter to explain how many millions of pounds our wonderful government had invested in mental health services – which didn’t actually address the problem of the cut backs in our area which I was referring to.

It was April last year when I sent my second letter of complaint to the Chairman of our local NHS Trust, regarding the cutbacks in respite beds. It took the Chairman four months to reply. In part he wrote:

“Although in the past [the respite home] provided respite on a limited basis our strategy in the future will be to provide a wider and, I hope, more convenient range of respite opportunities such as direct payments for home support, holiday respite and respite relief from home in other settings similar to [the respite home]. Until these arrangements are in place [the respite home] will continue its current arrangements.”

In other words “Stop writing to me because it will make no difference whatsoever – the changes will stay as they are”. What of these “other arrangements”? It appears to me that care services are being reduced in favour of direct payments, knowing that many people, including us, won’t even qualify. Those who do qualify are so ill that they could clearly do with both services. Alas, when you’re dealing with the NHS it’s one or the other – or neither – not both. I have no idea what “holiday respite” is – unless the government are planning on paying for holidays for everyone (yeah right), and “respite relief from home in other settings similar to [the respite home which we have just reduced the number of respite beds in] – what exactly is the point of that? Why would they open up another home similar to the one they have just “reconfigured” services in? Are these simply more lies designed to pacify me?

Not long after receiving this letter I became more depressed, although it took me a little while to recognise it. But we still had our three breaks a year, right?

Several things happened at the respite home over the following months, which provided varying degrees of irritation, but as usual, nothing to actually endear the staff to me. There were the stupid rules which prevented respite for Mr Man being booked by anyone other than his key worker, who of course wasn’t there, despite the fact that they all have access to the same diary for the same bed. Then of course there was the day when Mr Man was left caring for the emotional needs of a lady who was staying at the home as a form of “crisis intervention”, because the staff who were intervening in her moments of crisis didn’t actually notice that she was upset, or didn’t care. And of course there was the wasteful booking by staff members of the respite bed for Mr Man on a night he wasn’t even going to be there, because they insist on booking Monday to Friday / Friday to Monday, even if the person won't be staying for that full length of time, which left me wondering if the staff actually realise that they are there to provide a service, or do they believe that this home remains open simply to provide them all with employment?

Nothing could have quite prepared me for what happened when I called to book our third break for 2007 and a couple of breaks for 2008 though. Following my bout of depression, it was December before I felt able to face the thought of going away from home and trying to be happy, let alone dealing with those people at the respite home. I never look forward to calling and speaking to Jim, and actually it was Mr Man who kept prompting me to ring this time. When I did, I suppose I shouldn’t have been surprised to learn that the bed was fully booked for the rest of the month, and naturally the home was closed over Christmas and New Year, because no one needs respite or rehabilitation at that time of year do they? The bed was already booked by someone else for the dates we wanted in March, and due to the stupid “Monday to Friday / Friday to Monday” rule with the booking of the bed we couldn’t have the dates we wanted in July either. So I'd called to book three breaks, and couldn't book any of them. It seemed like a bit of a pointless service really. Probably to try to calm me down, Jim came up with the suggestion of booking a break in early January, and he said that would still count as one of our 2007 breaks. He seemed pretty sure of this – until I asked for confirmation in writing. It’s a good job I did really because once he had checked with his ever-so-helpful manager it became apparent that respite breaks cannot be carried over from one year to the next, even if it is booked early in January because the rest of the previous year is fully booked.

Hang on a minute, I thought the ever-so-helpful manager had told me what a flexible service this was, and that actually, I could possibly have more than three breaks a year if I wanted to because they would rather see the bed in use than go empty (which is obviously why they booked the bed for Mr Man for an additional night in October, knowing that he wouldn’t be there) and all I had to do was ask? Well now I’m asking, and we’re not even allowed our third break, let alone any extra. How flexible is that?

Once I had received the letter explaining this, I called Jim to cancel the break in January and to tell him what a liar his manager is. All he could say was “I’m sorry you feel that way”. Yes, I do. After all of my fighting last year with the Chairman, I actually felt that the manager was on our side, when in reality she was also lying to pacify me, only she was better at it than the Chairman.

These lies have left me feeling so angry that I’ve wanted to kill people. I can’t bear the thought of going to that place or speaking to anyone from there ever again. Several people have tried to help sort out the problem with the July booking by speaking to the manager at the respite home, including Mr Mans Care Co-ordinator, and the Carer Support Worker, but it’s pointless. She won’t even budge on such a small issue by allowing me to book Thursday to Sunday instead of Friday to Monday. Mr Mans Psychiatrist has said that she will now call the respite home, but I’m not holding my breath.

I haven’t replied to our good friend the Chairman. I haven’t had the emotional strength to do so. There are only so many times one can bang their head on a wall before it causes serious injury. Interestingly Jim claimed that other respite users appear happy with the arrangements. How does he know that? How does he know if these people are happy or if they simply do not have the strength to go through a pointless complaints procedure as I have?

Edit: I have now been informed that the bed has been booked by someone else for the Thursday in July, but of course I have no way of knowing if the person actually intends on staying on the Thursday night, or if the staff have just booked it anyway like they do with Mr Man. So there is a possibility that this bed that we need will remain empty on that night. Now you see why I get so angry when they insist on booking Mr Man in from Friday to Monday when they know full well that he will be going home on the Sunday morning.

Violence and Schizophrenia – Comments from Readers

2008-01-10T16:36:00.003Z

I would like to thank all those who commented recently on my posts “Violence and Schizophrenia”. Often I find that the comments left by readers are more interesting and informative than the posts I have written! Some of the explanations of what it is like to suffer violent intrusive thoughts were too valuable to leave unread by the majority in the comments section.

“The thoughts are like movies you can't shut off... no matter how horrible it is I can't press stop… I'm forced to "watch" the whole thing until it is done.”
- Minnesnowta

“I've struggled with these thoughts for a long, long time. I thought they made me a horrible person and I have done very silly things to try and erase them from my mind. I could not even write them down for fear that they would become more real.”
– Anonymous

“They cause great distress, and I wonder why my head does this to me? I don’t like swatting wasps, let alone harming a person; it’s just not me at all.”
- Slurry

I also sometimes receive comments which raise very interesting questions and points of view. No doubt these points of view will be shared by others, and so I would like to reply in full in a blog post. I have recently received the following comment from an Anonymous reader, regarding my posts on Violence and Schizophrenia.

“I have been reading your journal with interest and after some time have decided to post a reply to this thread.

On the topic of intrusive thoughts my guess is that we all have these and from time to time they can be elaborate, explicit and violent but a filter or whatever prevents us from taking these fantasies and enacting them in the real world. If this were not close to the mark I fail to understand the attraction that violent films and latterly computer games have for a large proportion of the population. In fact, children may re-enact what they have seen but as play rather than through real aggression.

I am reluctant to continue this post as I believe it will be unpopular with the non sufferers of schizophrenia and those with the illness who read this blog. However my opinion is as valid as anyone else’s and deserves to be considered.

A small percentage of people with serious mental illness are capable of the most appalling violence. I know of no way to differentiate those who will go on to kill and those who will not. I believe that by claiming that there are far worse dangers out there you are bordering on denial. There are many dangers out there, far more people are killed by the sane than the mentally ill but a percentage of schizophrenics will go on to kill.

Even a small percentage is significant, I personally know of no one who has been killed by a seriously mentally ill person. I have however been stabbed over a prolonged period by one and am lucky not to be one of the statistics I feel some would rather ignore.”

Anonymous, thank you for taking the time to respond to my posts “Violence and Schizophrenia”. Firstly I would like to say how sorry I am that you have been a victim of violence over a period of time. As you so rightly point out, your opinion deserves as much consideration as anyone else’s.

You begin your comments by stating:
“On the topic of intrusive thoughts my guess is that we all have these and from time to time they can be elaborate, explicit and violent but a filter or whatever prevents us from taking these fantasies and enacting them in the real world.”

I personally don’t believe that I have ever experienced intrusive thoughts. In rage I have experienced very violent thoughts, but as I endeavoured to explain in my previous post on the subject, intrusive thoughts are unrelated to the person’s emotional state and additionally are “intrusive” – unwanted, unwelcome, distressing, and difficult to be distracted from. Far from being a fantasy, they are more like a waking nightmare for those who experience them, especially as they can be accompanied by visual hallucinations. See the comments above by those who have experienced them.

You continue:
“If this were not close to the mark I fail to understand the attraction that violent films and latterly computer games have for a large proportion of the population.”

This is an interesting point. For Mr Man, the intrusive thoughts and hallucinations that he has endured means that there is rarely a violent scene in films that he finds more distressing than what he has already witnessed. However, this doesn’t mean that he finds violent films entertaining.

For most people who are entertained by such, I suspect that it is more than simply a case of desensitization. Over the years films have not only become increasingly violent, but the violence has been glorified by being acted out by the most popular actors delivering “cool” one liners. In addition, age restrictions have been reduced and the video games often allow the gamer to become the hero of the film. Violence then has become synonymous with many desired traits such as popularity, admiration, and sex appeal, to name but a few, and I feel it is this that has increased its popularity.

Like you, I fail to understand the attraction of such violent “entertainment”, but the result of which for many is an impaired conscience, which I believe you alluded to when you said “a filter or whatever prevents us from taking these fantasies and enacting them”. For some, the filter stops working. Despite suffering from intrusive thoughts, the conscience of a person with mental illness is no more likely to become impaired than anyone else’s. As Mr Ian, a psychiatric nurse for many years, said in the comments section:

“Most people with psychoses harm themselves before other people as they still maintain their moral reasoning that it is wrong to hurt others. Those that do harm others, only do so because they feel they are severely threatened, regard it as the best/only option for their dilemma, or they have a delusional belief that such behaviour is 'ok' (I once nursed a guy who stabbed a horse guardsman in the leg because [he believed] it was an act of mutual bonding and honour that the guardsman would have understood).”

You continue:
“A small percentage of people with serious mental illness are capable of the most appalling violence.”

I agree, just as a percentage of those without mental illness are capable of equally appalling violence.

“I know of no way to differentiate those who will go on to kill and those who will not.”

Again, I agree, just as I have no way of knowing which of those without mental illness will go on to kill and which ones will not.

"On Balance" by Philippa King

“I believe that by claiming that there are far worse dangers out there you are bordering on denial.”

I never claimed that there were far worse dangers, only that a person has as much chance of being killed by a person without mental illness as with. What I do question is whether a person’s mental illness is truly the cause of their violent acts in all cases. In many cases I think it is used as an excuse; on the other hand, for those who clearly were affected by mental illness at the time of committing a violent crime, support was obviously lacking as there are always warning signs before hand. Consider this comment by Mr Ian:

“In regard the myth of the "snap" theory, I agree. It never comes unannounced. It frequently goes unnoticed or unattended though. I have worked with violent mentally disordered offenders for several years now. What you say is true and accurate from my perspective also; that the true cause of the violent act being purely in psychotic reasoning is pretty rare. Often it is increased in probability by prior personality, intellectual or environmental influences; or is more to do with those predisposing/predictive factors and not psychoses at all.”

You continue:
“There are many dangers out there, far more people are killed by the sane than the mentally ill but a percentage of schizophrenics will go on to kill.

Even a small percentage is significant”

I agree that although the percentage of those killed by people with mental illness is small, those victims are not insignificant. However, I think it is unfair for the media to wrongly give the impression that these murders are more frequent than they actually are, or that everyone with a mental illness is violent. Rather than trying to ignore statistics, I am asking people to be balanced in their view of people with mental health problems.

I understand that your experience has not been a good one. You don’t say what your relationship is to the individual who has stabbed you, but I would recommend seeking outside help and advice from a GP or a Community Mental Health Team. If this person is persistently violent towards you he/she should either be arrested or detained in a secure unit under a section of the mental health act.

Thank you again for your comment, and to all who have commented on this subject.

Related Posts on Mental Nurse: The Will To Do No Wrong, The Will To Do No Wrong Part 2

The Ghost of Christmas Past

2007-12-21T15:26:00.000Z

First published 23/12/06. Edited for 2007.

Christmas is an incredibly lonely time for many people. Unlike any other time of the year the world seems to stop spinning and everything comes to a halt. In this country at least, this includes mental health services. This is just too much to cope with for some people; just knowing that no one is there for them if they need someone can cause an increase in anxiety. (See this news article)

Traditionally, it is a time for family and friends to come together. But some people don’t have any family. Many will be remembering lost loved ones, and some will be grieving new losses. Elderly ones in particular may have lost their spouses, siblings, and friends. Sick ones may struggle to form lasting friendships. For all of these ones, knowing that others are enjoying the company of people they love and who love them can make them feel more isolated than ever.

"The Silent Night" by Philippa King

For some people, going to the shops each day provides the human contact that everyone needs. But the shops are closed. I know people with mental health difficulties who wander around town all day, preferring the company of strangers than no company at all. How will it be for those ones when the town centre is completely deserted? When there is no one on that bench to chat to; no playing children to laugh at; no struggling mothers to joke with?

This weekend people may be writing a list of all their final arrangements, or their last minute shopping needs. Why not write a list of people who you know live alone? Maybe they’re elderly ones; maybe they have an illness of one kind or another. Maybe give them a ring just to show that they’re not forgotten. Maybe pop round for a cuppa and take them a slice of cake. At the very least you may just make someones day. Or you could even save a life. Maybe.

Violence and Schizophrenia – Part Two

2007-12-15T09:29:00.001Z

As previously discussed, and as confirmed by the comments received, Schizophrenia sufferers are often the victims of violent intrusive thoughts. But are people with Schizophrenia violent?

If your opinions are easily swayed by headline news then you would probably conclude that they are. I am aware that within the town I live in, stabbings and murder are far more common than I would like, but rarely – if ever – does it reach national news. The only type of killings that do reach national headlines are the ones that are particularly shocking in some way – a child perhaps; a whole family; or a murder committed by someone with mental health problems. Now there’s a headline.

With so much media coverage every time a person with mental health problems commits a murder, it’s no wonder that people think they are all mad, axe wielding murderers. In fact, as few as 50 murders a year in the UK are recorded as being committed by someone with mental health problems, compared to 1,300 suicides – when it is said that people with Schizophrenia are more likely to hurt themselves, it’s true.

95% of murders are committed by “sane” people. My guess is that of those 5% of murders which are recorded as being committed by people with mental health problems, many of them could have been prevented, and many of them would have been committed whether the person suffered from mental illness or not. Why do I say that?

It is a myth that people with Schizophrenia will suddenly “snap” and become violent. Uninformed (and even misinformed) individuals still believe that people with Schizophrenia have a split personality and will switch without warning between the two. Often people believe that whilst one of their personalities may appear “normal” the other is often psychopathic. The truth is that people with Schizophrenia only have a “split mind” in the sense that they are split from reality, with principle symptoms of Schizophrenia being delusions and hallucinations. If suffering from Schizophrenia was really the cause of a person committing murder it would be because of these delusions and hallucinations. The person would probably have a strong belief that he or she was acting in self defence, as many delusions include feelings of persecution.

It is thought that maybe only 1% of the 1% of people who suffer from Schizophrenia commit violent crime.

"True Figures" by Philippa King

Of course, with adequate mental health care this situation should be rare. Although symptoms can progress quickly in a person with Schizophrenia, we are talking about a matter of days or weeks rather than minutes or hours. Before a person ever deteriorates to the point of acting on their belief that they have to kill in order to protect themselves or their family, the deterioration should have been recognised and intervention should already have taken place.

But as I said earlier, many of those murders which are committed by people with mental health problems may have occurred anyway. A diagnosis of Schizophrenia, or any mental illness, does not define a person or their personality. Like any other illness, Schizophrenia is indiscriminate and can affect people from all walks of life, different upbringings, and different personalities. It stands to reason then, that with as many as 1 in every 100 people suffering from Schizophrenia, at least some of them will have a criminal mind. Add to the equation the fact that illegal drug usage can induce Schizophrenia, and it’s easy to see that many of those murderers could already have been on a criminal path even before the onset of their illness.

Obviously, the job of their solicitor, if the crime is undeniable, would be to negotiate the shortest prison sentence possible, and if that means playing on a persons mental health – whether relevant or not – they will do so.

So taking these things into account, I wonder what the true figure should be of those who commit murder because of their mental health. And how many more could be prevented? Also, are we really in more danger of being murdered by a person suffering from Schizophrenia – whose condition should be closely monitored by a Community Mental Health Team – rather than your average bad tempered driver, a group of drunken youths, or even that friendly and polite neighbour of yours who hides bodies under the floor boards?

Related Posts: Violence and Schizophrenia - Part One, Violence and Schizophrenia - Comments from Readers

Violence and Schizophrenia – Part One

2007-12-08T18:35:00.001Z

I’ve only ever really skimmed over the symptoms of Schizophrenia in my blog. To be honest, there are so many websites that list the diagnostic criteria for Schizophrenia already, and probably far more accurately and eloquently than I ever could. When you are a sufferer of Schizophrenia though, or care for someone who is a sufferer, you realise that there are other common symptoms which are not listed as part of the diagnostic criteria, but are suffered none the less. One of these symptoms is intrusive thoughts. What do I mean by that?

I don’t mean the compulsive thoughts that Mr Man often struggles with. Compulsive thoughts are similar to what is experienced by a person suffering from Obsessive Compulsive Disorder – an obsessive compulsion to carry out often ritualistic behaviour accompanied by anxiety. For Mr Man these compulsive thoughts present themselves as obsessive counting in his head, and re-arranging things in order. When we had some children’s building bricks in the living room he had compulsive thoughts to build them into a symmetrical shape, dismantle them, and then rebuild them again. Trying to resist this compulsive thought caused him a lot of anxiety until eventually we decided to put the bricks away out of view.

The intrusive thoughts that Mr Man experiences cause him anxiety for very different reasons. These thoughts are very violent in nature, and he describes them as being inserted into his brain as if by an outside source. It is precisely because these thoughts do not reflect his own feelings that they cause him so much anxiety, rather than it being the strain of resisting such thoughts. These violent thoughts are not temporarily accompanied by a surge of anger which could tempt the sufferer into acting upon them; neither are these callous thoughts with no feeling for the victim; rather, they are unwanted thoughts that cause the sufferer a great deal of anxiety as they have no desire to act on them. They are as unwelcome as the frightening hallucinations a Schizophrenia sufferer experiences.

"Intrusive Thoughts" by Philippa King

When Mr Man was at his worst, he had intrusive thoughts of killing me and cutting me up into pieces. He said he also saw himself doing it on a sort of screen in front of him. Was I scared? Not at all. Should I have been? Should I have been afraid of a man who had never raised his voice to me let alone his hand, and who sobbed and shook with grief at the thought of carrying out such atrocities? I never feared that he would ever act on these thoughts. In reality these intrusive thoughts caused him far more anxiety than they ever caused me; my only concern was how traumatic the experience was for him.

As I said though, this is not a symptom I have ever read about. Maybe this is why when Mr Man explained what he was experiencing to the staff in the hospital they didn’t believe him – they actually thought it was an act and that he simply wanted to kill me. He was told that if he killed me he would be held responsible for his actions and he couldn’t “get away with it” by claiming mental illness. My goodness, they must have had some good actors on the ward if they thought this was an act, because I have never seen a man so distraught in my life. Their suggestion that these thoughts were his own desires only distressed him further.

I know another Schizophrenia sufferer who has also experienced very violent intrusive thoughts. She also finds them very distressing. Although describing them in exactly the same way as Mr Man – as being inserted into her brain by an outside source and feeling that they are not her own thoughts – she feared that she was actually a bad person and felt a lot of guilt over it. She never told anyone at the hospital about these thoughts, and no one ever asked her because, I suppose, it is not part of their diagnostic criteria. It would have been helpful for her to know that what she was experiencing was part of her illness though.

I think it’s important to note that although Mr Man has struggled with, and eventually acted on compulsive thoughts and command hallucinations, he has never acted on these unwanted intrusive thoughts.

Does the presence of compulsive and intrusive thoughts mean that people with Schizophrenia are more likely to be violent? Are they “on the edge”, ready to snap at any moment? This will be discussed in the following article.

Appeal

2007-11-27T23:00:00.000Z

Mera Peak Funding Appeal

Promoting Positive Schizophrenia

Schizophrenia is a very destructive condition. Often, recovery is thought as 'near' impossible. A very high percentage of those diagnosed with schizophrenia are unable to work or live life without torment due to the demoralising and destructive symptoms. The mistreatment and management of the symptoms and the stigma and discrimination towards those who are diagnosed can be just as destructive as the disease itself.

Stuart Baker-Brown, a campaigner and activist for greater understanding and treatment towards schizophrenia was diagnosed with the disease in 1996. For many years he has been promoting his own positive recovery to inspire and offer hope to all those who share his diagnosis.

Mera Peak Challenge

In October 2008, Stuart will visit Nepal and attempt to get to the summit of Mera Peak 6500m. Mera Peak is very achievable for 'strong trekkers' and the capabilities of summiting without experienced mountaineering skills are high. Stuart has visited Nepal before and has successfully completed a trek to Everest Base Camp. He has already tried to summit Mera Peak in march 2006 but weather conditions were severe and so the challenge had to be abandoned. His achievements and story of recovery has been covered in the media.

We need your support

In order for Stuart to get to Mera Peak he needs to raise £3000. Stuart hopes that his potential summit will help to inspire the 51 million people around the world who are diagnosed with schizophrenia on their own personal journey of recovery. Stuart's own achievements and recovery has already helped many. Please donate generously and support Stuart's attempt to reach even 'greater heights' and send a very positive message of 'hope' to all those diagnosed with schizophrenia.

Please donate generously. You can make a donation via the One Mans Mountain website or contact Stuart Baker-Brown directly at-15 Acreman Street, Cerne Abbas, Dorchester, Dorset, DT2 7JX.

With your valued support and kind donation, Stuart can continue to inspire those who need a 'ray of light' in the demoralising and misunderstood world of schizophrenia.

Please help us make this attempt possible and help many on their own journey of recovery! To promote positive schizophrenia.

With our greatest thanks to you all.

Stuart Baker-Brown and the One Mans Mountain Team.

www.onemansmountain.com

The Perfect Gift

2007-11-20T18:11:00.000Z

It’s here. It has arrived. The new 2008 calendar by Philippa King is out NOW!

But hold your horses! There is no need to go rushing off to get your hat and coat! You can buy the calendar right here, online, in the comfort of your own home, from Lulu. (Preview available)

What’s more, you’ll be helping to raise money for Mind, the leading Mental Health charity in England and Wales, as £1 from every calendar sold will be donated to this charity.

What better way to raise awareness, raise money, and raise a smile, all at the same time?

For those who are unsure about ordering from Lulu, having received my calendar today, I can now confirm that the quality of the calendar is excellent. It is printed on to thick glossy paper, and it arrived undamaged and very well protected, packaged inside a box. Even my postman couldn’t harm it! (Although he always tries – he likes throwing our parcels over our 6 foot gate onto a concrete path) From the date of dispatch it has taken 2 weeks for it to arrive from the US to the UK.

If, like me, you are a fan of Philippa’s work, she now has an online gift shop with items ranging from T-shirts to greetings cards. Take a look here.

The Truth Revealed

2007-11-05T00:31:00.001Z

Continued from "The First Three Weeks"
End of June 2002

It was a Thursday. A bed had become available for Mr Man on the Acute ward in the Psychiatric hospital. The decision was made to move him from one hospital to the other during the afternoon and a member of staff took him in a taxi. I wasn’t allowed to visit him until the evening during the usual visiting hours. I know this may seem reasonable to most, but for the first time I felt completely excluded from Mr Mans care.

It wasn’t just my own feelings I was concerned about though; Mr Man had relied on my support through every step – we had been inseparable for months leading up to his admission. I had been with Mr Man at every appointment; every team meeting; and I had been with him during the whole admission process when he was first admitted. Now suddenly he was being moved to an unfamiliar building, with different patients, different staff, and different rules, and he had no one for support. He was alone. I was angry about this; an emotion I became very familiar with over the following months. I felt like we were being kept apart like naughty school children.

At least because this was a psychiatric hospital with no need for fancy electrical equipment Mr Man and the other patients were allowed to carry mobile phones, so we were able to keep in regular contact. I felt more at ease knowing that at any time of the day or night Mr Man could ring me if he felt he needed to.

I went to the hospital that evening to visit him. “Visitors please report to the office” read the sign on the door. I didn’t have to do this at the other hospital as most of the time the entrance to the ward was locked and a member of staff had to let you in. Despite the inconvenience of this to the members of staff there they still managed to greet the visitors with a smile.

I walked in and knocked on the office door. A stony faced woman swung the door open and stood looking at me without a word, waiting for an explanation for my being there. I was a little taken aback by this cold greeting. Looking back I can see now that the staff were so disinterested in the patients that they hardly knew who was a patient and who was a visitor, and so treated everyone with the same level of contempt.

I was led to the garden where Mr Man was sitting on a bench, nervously rocking backwards and forwards. It was a beautiful sunny day. I cuddled up to him and we held hands, hardly knowing what to say to each other. This was a very stressful day for Mr Man; not only had he been moved from one hospital to another and denied the support of his wife, but also I was leaving that evening to go to the convention city for three nights. I would have felt guilty for leaving him at any time, but after such an unsettling day I felt worse. But it was “doctors orders” so to speak; after realising I had been on suicide watch for many months she insisted that I needed a break away. The hotel was booked, and my room mate was now depending on me for transport.

It was then that he told me.

“They’re watching me all the time. There are cameras’ everywhere”

In that moment I knew he was suffering from something more than severe depression, but I had no idea what; I just knew it was serious. He was so scared; he really believed what he was saying was true. I didn’t know what to say; I had never dealt with anything like this before in my life, but somehow I felt it was wrong to just dismiss his beliefs, brushing his feelings aside, and to tell him it was untrue. On the other hand I couldn’t confirm it either.

“How long have you felt like this for?” I eventually asked him.

He had felt that way for years but had felt unable to tell me. I left that evening feeling completely shell shocked. I didn’t know what I felt. I was numb. I was confused. Should I really be leaving him?

"There Are Cameras Everywhere" by Philippa King

I drove to Coventry city, chatting with my companion as I drove, but all the while with my conversation with Mr Man in the back of my mind. How we ever got there alive I’ll never know. I negotiated the ring road with only two months of qualified driving experience and my head still spinning from the bomb shell he had dropped on me before I left.

I had only taken my test because I knew that it was a possibility that Mr Man could be admitted into hospital at some point. I didn’t have time to mess about; I booked my test and then rang the driving instructor and told him I had 6 weeks until my test. He was brilliant and thankfully I passed first time. About 5 weeks after I had passed Mr Man was admitted into hospital. I don’t know how I could have supported him and visited him every day without being able to drive.

My companion and I met up with a couple of acquaintances once we had reached the hotel. The four of us ate together for the next three days but I had little to say. My conversation with Mr Man just went round and round in my mind. My companions were of an older generation and didn’t really understand mental health issues, but after losing three husbands to ill health my room mate was sympathetic to the strain of having a husband in hospital, especially at such a “young age” as she put it. It was difficult not having anyone to discuss my fears with and knowing that no one could really understand what Mr Man and I were going through though.

At the convention on the Saturday I bumped into an old friend who had previously suffered from a nervous breakdown after her husband had left, and had spent some time in a psychiatric ward herself. She asked me how Mr Man was doing and the truth poured out from me as I broke down in tears for the first time. At last – someone I could talk to who would really understand. She said to me “You must watch the film ‘A Beautiful Mind’. It’s all about a man with Schizophrenia”. I didn’t understand what she was trying to say to me, but I made a mental note of the film; her film choices were usually good.

I was exhausted when I returned to my home town on Sunday evening, but I couldn’t wait to see Mr Man again. I don’t remember much of my visit, only that the atmosphere on the ward didn’t ever feel “right”, but I couldn’t put my finger on the reason why. At the time I tried to put my uneasiness down to the people and surroundings being unfamiliar to me.

On the Monday my hairdresser friend came to my house to cut my hair. She also asked how Mr Man was and I told her what he had said about being watched all the time. “Do you think he has Schizophrenia?” she asked. She was the second person to mention this illness to me. I needed to find out what it was.

I did an internet search and found that there were four main symptoms* of Schizophrenia. They were (in their most simplistic form):

• Delusional thoughts. Commonly thoughts of being persecuted or being watched. This had been confirmed by Mr Man just four days earlier.
• A flattening effect. Lack of emotional expression, including facial expressions, tone of voice, and eye contact. This I had witnessed myself in the months leading up to his admission.
• Negative symptoms. Being withdrawn and lacking motivation to even care for ones own physical needs. Again, something I had witnessed during the previous months.
• Hallucinations. Most commonly, hearing voices. This was the only box I couldn’t tick; I didn’t know whether he was hearing voices or not.

I knew I had to ask him.

When I visited Mr Man that evening we sat in the “quiet room” together. He looked around the room nervously. The smoke detector was a camera; the plane flying overhead was watching too. I had never seen him looking so frightened and anxious.

“Do you hear voices?” I asked him softly as I held his hand. He nodded.

I tried not to ever confirm or deny their existence; I only asked questions to help me to understand what he was experiencing. Bit by bit the whole frightening truth came out. He didn’t tell me about the voices before because he was scared; they told him not to tell or they would hurt me. They used to help him write computer programs but now they were trying to steal his ideas from him. They were sending beams to steal his thoughts, and projecting holograms which spoke to him.

"Thought Theft" by Philippa King

I knew then. I knew. But the “educated ones” weren’t as easily convinced.

*Although this is what I had read at the time, Schizophrenia is a complex condition and should be properly diagnosed by a person qualified to do so. More information on symptoms can be found here.

Next post: Dark Days

Happy Anniversary Mr Man

2007-10-27T00:50:00.000Z

Today we celebrate our 10th Wedding Anniversary.

We have been through so much together and yet the time has flown by. Our anniversaries have always been important to us, and actually we got married just two days after the anniversary of when we first started dating, so we’ve been together exactly 11 years and 2 days.

We received the loveliest compliment the other day, when someone asked how long we had been married. When we told her, her jaw fell open in shock and she said “I thought you were newly weds!”

Loving Mr Man is just so easy; I’m not sure if we’ve ever had to “work” on our marriage as such. It’s true that every relationship involves a certain amount of compromise, but having to compromise for someone you love so much is never a burden.

What do I love about Mr Man?

On the face of it we have little in common; I hate his taste in music and he hates mine; he likes sport and I don’t; I like dancing and he doesn’t; he likes meat and I like veg; he likes being alone and I like company; the list just goes on and on! But when it comes to important issues we think the same; he has a strong sense of justice and believes that all people are equal. He treats everyone with respect. He’s not impressed by education or social status, but rather good manners and sincerity.

He’s intelligent and creative, funny and good looking; and yet humble, modest, and unassuming. He’s sentimental and romantic, loyal and kind.

Probably the thing I love most about Mr Man is the fact that he loves me, despite all my flaws and weaknesses. I’m still amazed by that fact every day, as he knows my flaws more than anyone else. Ten years on and he still tells me that he loves me every day. He still tells me that I’m special, beautiful, and how lucky he is to have me. He proves that he means it by the way he treats me. How could I not feel drawn to a man like that?

Thank you Mr Man; I love you too. I consider myself the luckiest girl in the world to have someone as special as you. Thank you for marrying me.

Related posts: So Blessed, All Because The Lady Loves...
Read How our relationship began

Respite

2007-10-06T21:15:00.000Z

Dictionary definitions of the word Respite:

• to relieve temporarily, esp. from anything distressing or trying; give an interval of relief from
• a usually short interval of rest or relief
• a (temporary) relief from harm or discomfort

Respite comes from Old French respit, from Latin respectus, “a refuge, a retreat”

Mr Man went into his respite home again recently. It’s one of those necessary evils that both of us hate. If I’m going away somewhere Mr Man can’t cope with either coming with me or staying at home, and so he needs to go into “respite” accommodation. I know I’ve complained earlier in the year that there are not enough respite beds, but that doesn’t mean that we like using them!

The day that Mr Man goes in is always a stressful one, and we tend to leave everything to the last minute; pointlessly trying to delay the inevitable. I feel so cruel dropping Mr Man off there when I know that he hates it there so much. He feels insecure being away from the familiar surroundings of our own home, but we both know he won’t cope being on his own. At least when he goes into the respite home he always stays in the same room, which helps to give him that sense of familiarity that he needs. Also, I worry about how he will cope while I’m away. I don’t trust the staff to notice if his symptoms worsen.

"Respite" by Philippa King

We both tend to avoid contact with the people who work there as much as possible. They’re pleasant but clueless, and so laid back that they’re almost levitating in a horizontal position. It’s frustrating to say the least. The presence of one member of staff in particular makes Mr Man feel extremely uncomfortable as he used to be his manager when he worked for Royal Mail, and they didn’t get along at all. Neither of them has brought up their past relationship, and they’re pleasant to each other, but it’s very awkward.

Mr Man tends to just stay in his own room most of the time. He takes his laptop with him and connects to the internet using his mobile phone as a modem, and he also has a little gadget that he takes with him that he can watch all his favourite films on.

He did spend some time in the living room this time though, comforting a woman who was also a “guest” there. Now bear in mind that there is only one respite bed and Mr Man was in it, so this lady has either just been discharged from hospital and her stay there is part of her rehabilitation into society, or she is staying there as a form of “crisis intervention” – in other words her mental health is deteriorating and she is not coping at home, so they move her to this home in the hope that they can stabilize her before she deteriorates further and needs a hospital admission - after all, prevention is better than cure, and rehabilitation homes with unqualified staff are cheaper to run than psychiatric wards which require proper nurses. Bearing that in mind, I’m not quite sure how this “crisis intervention” thing is supposed to work; the staff have no say over medication or any other form of treatment or therapy. In all honesty they appear to be nothing more than baby sitters.

When Mr Man first stayed in this home I was quite impressed with the relaxed atmosphere and the fact that the staff room door was always open. Rather than making themselves unapproachable by hiding away in the office for their gossip and tea, the staff have an open door policy whereby guests can just walk in to the office at any time of the day or night for a chat. This is so different from the hospital that Mr Man was in where patients were treated like naughty school children, left queuing outside the office door, and were not allowed out of their rooms after a certain time.

However, going back to the lady that Mr Man was comforting, what she needed was more pro-active care rather than re-active*. As she struggled to hold back tears she explained to Mr Man that she felt too shy to just walk into the office and announce “I need to talk to someone”. Once again I suppose it comes down to the age old problem of these staff members not being psychic; they can’t offer help unless they know it’s needed. But surely discernment would be a good quality to possess for a job like this?

To be honest I’m not sure what qualities or qualifications are looked for when these people are employed. I mentioned previously how Mr Mans Key worker, Jim, unhelpfully tried to offer me various dates for Mr Man to stay as a substitute for the actual dates I needed – not very helpful when you have a hospital appointment for an operation on a specific day. He has also rather tactlessly suggested to Mr Man that he should stay more often to give me a break at home, as if Mr Man is a burden to me. If it didn’t make me so angry it would be laughable considering the cutbacks in respite accommodation. How could he possibly stay more often?

This time when I booked the dates for respite Jim booked Mr Man in for the Sunday night “just in case”, in addition to the Friday and Saturday I had asked for, despite the fact that I had already told him that Mr Man would be picked up by his sister on the Sunday morning. I couldn’t be bothered to argue with him. The less time spent in conversation with him the better. When I dropped Mr Man off I made sure that the staff were aware that Mr Man would not need the bed on Sunday night, but they left him booked in saying “It doesn’t matter”. Well, obviously not to them, but as someone who struggles to get the dates needed for Mr Man, especially now that there is only one respite bed for the whole of the north of the county, I feel it is a shocking waste of resources to book a bed for use when you know full well that it will remain empty. What happened in the summer is a classic example; I didn’t know until less than one week before I was due to go away whether the bed would be free on the Thursday night or not. Is this the kind of attitude that staff have at all of these kinds of homes?

To be honest I’m beginning to wonder whether it’s really worth all the stress just for a few days away. This last time that Mr Man stayed there I was incredibly worried about him as he began to feel very down on the Saturday. I couldn’t sleep that night because I was so worried about him and ended up phoning him at about 2am to make sure he was ok. Even after all this time I can’t shake the thought that he might seriously harm himself or even attempt suicide. I suppose after living with that very real fear for so long it will never leave me entirely. My only comfort is that when he is in the respite home he is not completely alone, so if I suspected that something was seriously wrong I could get the staff to check on him.

On Sunday evening I was so relieved to have him home again with me. Our true respite.

*In behavioral medicine, proactive often refers to a treatment approach where a therapist initiates contacts as opposed to reactive where the responsibility for contacts with the therapist is entirely on the client. - Wikipedia

Progression or Regression? Part Two

2007-09-26T12:11:00.000Z

The situation with Mr Mans health continues to be confusing for me.

His Table Tennis nights had dwindled down to once a week towards the end of the summer, but now that the season has started again he’s back to playing four times a week. Despite playing more often, the anxiety he experiences before he goes out seems to be getting worse instead of better, even on practice nights. But once he gets there and starts playing he seems completely fine, unless he is just doing an amazingly good job of hiding it, like he did at the wedding the other week.

When I went to pick him up last night he was chatting away to other players, and you could almost forget there was anything wrong with him at all. But once we returned home he kept telling me how unwell he was feeling and he even reverted to banging his head repeatedly on the wall – something he hasn’t done since the last time he was admitted into hospital in 2003.

When I think about it, he hasn’t composed any music for a few days now, and he’s nearly set fire to the kitchen twice recently, so I suspect he is struggling with concentration at the moment. Until recently he was coping quite well with cooking – something he has been doing more of since the worsening of my own health this time last year.

I get it so wrong sometimes when I’m looking after Mr Man, even after all this time, probably because the level of what he can cope with keeps changing. It’s so confusing. Also, it’s hard not to react to a situation sometimes. After hearing him banging his head repeatedly, I went into the kitchen to give him a cuddle and some reassurance. However, when I walked into the room he was just sitting there in the chair whilst the chip pan oil was burning and filling the room with smoke. “What on earth are you doing?” I shrieked. “I’m just waiting for the oil to cool down” he replied. “But the gas is on underneath! It’s burning! Look at the smoke! Can’t you see it’s burning?”

I should have thought more rationally about the situation before I freaked out the way I did. My reaction only made him feel worse. It’s never a good idea to freak out at someone suffering from psychosis; it only adds to their anxiety and confusion. He has enough going on in his mind as it is. If I had thought about it calmly I would have quickly concluded that he obviously wasn’t feeling well and shouldn’t even have been attempting to cook food. He’s never done anything like this before; he usually knows which gas setting to use so he obviously wasn’t thinking clearly. I should have just switched the gas off and given him his cuddle. Why did I even think he would be well enough to cook food after he had told me he didn’t feel well?

The confusion psychosis causes can be frightening and disorienting, like thick plumes of smoke.

"She Shouts" by Philippa King

So the question “Progression or Regression?” should really be aimed at me. Am I progressing or regressing in my role as carer (or even wife)?

Progression or Regression?

2007-09-13T13:21:00.000Z

Sometimes I just can’t tell.

Mr Man keeps a lot of how he feels to himself. Often I have to rely on visible “signs” of symptom fluctuation, such as pacing the floor and looking out of the window a lot, and then I ask him specific questions. Occasionally he makes the statement: “I don’t feel very well” without prompting, but he doesn’t elaborate on what that means without very specific questions. Simply asking “In what way?” produces the response “All ways”. I have to actually ask: “Are the voices worse?” and he’ll nod to confirm that they are.

Mr Man appears to be coping very well at the moment. He’s been keeping himself incredibly busy in his studio, either by composing music, writing computer programs or designing websites. This is obviously a good thing and shows that his level of concentration has improved dramatically.

Also, he actually came to a wedding with me at the weekend, and I was amazed at how well he coped. In the past he would have been throwing up, shaking, sweating, and looking extremely pale, but although I know he was feeling anxious he controlled it very well and showed no visible signs of it. We were both relieved to find that it was a relatively small occasion, but we didn’t stay for the whole evening; the ceremony, the meal, and the speeches were more than enough for Mr Man. Once we stood up to leave Mr Man couldn’t get out of the building quick enough and I found myself chasing after him!

But besides the expected worsening of symptoms since the wedding, there have been other little things that make me wonder if Mr Man is doing as well as it appears.

Recently he’s taken to sitting on the front doorstep. Initially I thought this was a step forwards as he’s usually anxious about being outside where “the voices can see him”. But then I realised this was merely an extension of looking out of the window, which he does because he believes people are watching the house. I asked him one day if he was getting some air, but he told me he was “just keeping an eye on things”.

"The Threshold" by Philippa King

Also, although I’m glad that he has been keeping himself busy and distracted in his studio, this also means that he is neglecting himself more than usual. After sleeping a lot myself the other day, I woke in the evening to find that he hadn’t had anything to eat or drink all day.

I was amazed to find that he had actually washed his own hair last week, and again, this would appear to indicate progress. He said it was because he didn’t want to wake me, but I suspect it was because he was trying to escape the anxiety of being forced to have a bath. He didn’t escape it though; I made him have a bath before the wedding. But there’s something about bathing that makes him revert back to something resembling the man I cared for before his first hospital admission. He suddenly becomes withdrawn and depressed, and he just sits there with his head hanging low, unwilling or unable to wash himself; I can’t tell which. He says he hates getting wet, and having a bath makes him feel “exposed”, but unfortunately it’s one of those necessary things that I have to make him do sometimes.

Generally though, I would still say he’s doing much better than previously. Although his symptoms worsened after the stress of the wedding, it wasn’t as bad as when he went to a committee meeting for his table tennis club a couple of months ago.

Mr Man seems reluctant to admit that he is improving though. I wonder if it is because subconsciously he worries that if others think he is improving then too much will be expected of him, or that he won’t be given the support that he still needs. That must be a very real fear for people recovering from mental illness, especially as so many people only seem to be able to understand “ill” or “well” and nothing in between. “In between” can be very confusing though.

M.A.D Art Installation

2007-09-09T18:04:00.000Z

If you haven’t had the opportunity to go to the M.A.D (Making a Difference) Art Installation this week, unfortunately you have missed your chance, as the last day was today.

I managed to go on Friday with my Curly Haired Friend, and it was a very moving experience.

I was quite surprised when I first arrived as I wasn’t expecting the Gallery to be so small, but there was a lot of work crammed into a very small area, and our time there seemed to absolutely fly by as there were so many fascinating pieces to see, hear, and read. I only wish that the pieces had been properly labelled to give full credit to the artists.

One piece that I could hardly tear my eyes away from was this piece with the words “The One That Got Away” written in the bottom right hand corner.

Made of tubes, to me the people looked like they were tied up in straight jackets. It reminded me of how people with mental health problems are often restricted and held back from enjoying life due to heavy medication regimes inflicted on them. Also, how restrictive it must feel to have ones freedom taken away when hospitalised against ones will, and yet without the safety of those confines “the one that got away” didn’t fair any better. It seems to be a hopeless situation for some, and it struck me that mental illness is like a straight jacket in itself. How can one break free from that?

I also found the sculptures interesting to look at and I couldn’t help but notice that all except two of them were people bowed down low, obviously indicating the crippling depression that accompanies mental illness. The only two that were looking up seemed to me to be writhing in pain.

My Curly Haired Friend, who like me, has suffered from depression, was drawn to this ladder made with barbed wire. It reminded her how impossible it feels to pull yourself up again once you have reached the bottom, as every step is full of pain.

Although the art was very good, the experience was painful. It wasn’t a celebration of art, or a celebration of those surviving mental illness, but mental illness expressed through art. I just saw and heard pain everywhere. For me, the most distressing part was one of the audio pieces; the constant mumbling and whispering was unbearable. I wanted to scream for it to stop, and I realised that this is something that Mr Man has to cope with every day.

Although upsetting, it was an experience I would recommend as it fulfilled its purpose of giving insight into the torture of mental illness.

My apologies for not being able to give credit to the relevant artists.

Other exhibitions

The “Frame of Mind” Art Exhibition will be displaying artwork of people managing a serious mental illness or brain disorder. It will be held on Monday 22nd October - Sunday 4th November 2007 at Wycombe Swan, High Wycombe, Buckinghamshire. Wycombe Swan Art Gallery is situated in the Circle Foyer. Click here for directions.

“Mental Image” is an international open art exhibition exploring mental health hosted by Project Ability. Selected work will be exhibited in Project Ability’s two galleries, located in the centre of Glasgow, from Monday 8th October – Friday 23rd November 2007. Click here for location and more information.

News Flash!

2007-08-22T19:37:00.000Z

It is the first anniversary of this blog at the end of the month, and with that in mind I have a new and exciting development to announce.

I am very pleased to announce that this blog now has an official illustrator – Philippa King.

Philippa is an extremely gifted individual who writes and paints about her experiences with Schizoaffective Disorder. Having suffered from mental illness for 19 years of her life, Philippa has found solace in her art explaining “I live to paint and paint to live. Time spent not painting is time spent not breathing”.

Philippa’s art is a very powerful tool in portraying how it feels to suffer mental illness, which is precisely the reason why I contacted her to ask if I could use some of her art on my blog. What happened next can only be described as having a whirlwind romance with her art, as I quickly went from falling in love to owning a piece of my own within days.

I was blown away when Philippa agreed to actually illustrate my blog, and her first piece “Because I Love You” (for this post), sold within two days, really demonstrating just how moving her art is.

I don’t recall ever being affected by art in this way before. Philippa’s paintings really provoke an emotional response in me, and it is a privilege to have her illustrate my experiences with Mr Man.

Thank you Philippa.

When I looked at this beautiful piece close up it provoked a very strong emotional response in me. If you look closely you can see a girl standing behind the glass wall.

"Behind a Glass Wall" by Philippa King

Philippa displays her art in her blog Loaded Brush. Not all of her art relates to mental health, and some of her pieces are playful and funny. For a person who is knowledgeable about art it is easy to see who her influences are, including Van Gogh, Lucian Freud, and Francis Bacon. There really is something for everyone.

Genius or Madness? The Connection between Psychosis and Creativity

2007-08-14T01:53:00.000Z

Part Three – To Treat or Not To Treat

We’ve already seen how psychosis can often be a positive experience for some people, and can contribute to creativity in various ways. We’ve also seen the enormous sense of loss that one feels when it has gone. Bearing this in mind, is it necessary to treat it?

For Mr Man it seems that it was; those friendly voices had long been replaced by the threats and demands of the unfriendly, which is what led to the discovery of his illness. Instead of telling him the next best possible move in a Chess game, or the solution to a programming dilemma, they would tell him he was stupid and worthless. Instead of helping him to be creative, he believed they were stealing his ideas. The voices demanded he continued to “work” for them, or they would kill his wife. Mr Man became more and more paranoid, depressed, and suicidal, and his illness became unmanageable.

So why is psychosis a pleasant experience for some, and an unpleasant experience for others? Why does that pleasant experience sometimes change, as it did for Mr Man?

I have no idea if there is currently any research into this area, but in my opinion there should be. It would seem that some people are predisposed to certain mental illnesses. This could be for a variety of reasons, including genetics or problems during pregnancy which effect the development of the brain. However, some people will not develop mental illness until a second trigger comes into play. That second trigger could be stress, trauma, or drugs.*

My theory is that some people who are predisposed to mental illness will go on to develop a “happy” kind of psychosis, but those who do not develop psychosis until a second trigger comes into play will develop a more “depressive” kind of psychosis. For those people who previously experienced “happy” psychosis; stress, trauma, or drugs could also cause them to develop a more “depressive” psychosis later on. Of course this is only a theory, and like all theories, needs adequate research to prove or disprove its accuracy.

“Taunting voices they are, never kind any more. When did that change?” - Catherine

Mr Man experienced “happy” psychosis since his teens, and thus was able to keep it to himself for over 10 years. In his late twenties he experienced the physical stress of suffering from Epstein Barr, and the emotional stress of trying to hold down a job while he was suffering from this virus, as well as extra burdens placed on him by his manager. It would seem that it was at this time that the nature of his psychosis changed and the voices became more threatening.

Hearing voices is often a traumatic experience for the sufferer

"The Words of my Voices" by Philippa King

There is evidence** to suggest that the longer psychosis is left untreated, the harder it is to treat. Bearing this in mind, and also the changeable nature of psychosis, should all those who experience psychosis be treated, even if it is a positive experience for them? I really feel that this is a moral question which I have no answer to.

Finally...

Earlier this year I received the following comment by Doctor Goober Modesty:

“There is a fine line between genius and psychosis. It is never spoken about in a clinical setting, seems like only on the Internet. From my view point, the Mental Health System does not know how to handle the genius in us persons with Schizophrenia. Here in Canada, namely Montreal, the Hospital started to invest in my genius slant through the arts... times do slowly change for the better!” – Doctor Goober Modesty

I have to agree that mental health staff often do not know how to handle genius. I suspect part of the problem is their inability to recognise it due to their own limitations, but if what is produced is linked to the psychosis then they may wonder if it is a good thing to encourage it.

Mr Man was often treated with little or no respect whilst on the ward, and yet he was undoubtedly more intelligent than the staff treating him that way. If they had looked into his little note book that he carried around with him, they would have seen a long list of zero’s and one’s and no doubt would have concluded that it was part of his “madness”, and yet a math professor would have instantly recognised that he was forming a code with the use of binary.

On the other hand, even if they had recognised the complexity of the code and understood the mathematical side of it, would it be right for them to encourage Mr Man to develop it, knowing that he was writing a code so that we could communicate without the “company” understanding us? Surely that would reinforce his delusional thoughts? Yet, isn’t art therapy encouraged in psychiatric hospitals? Isn’t that also reinforcing delusional thoughts for those who feel that they are “instructed” to paint or draw through psychosis?

It seems that the topic of creativity and psychosis is a complicated one with many more questions than answers.

Finally we arrive back at the original question: Genius or Madness?

You decide.

Special thanks to Seaneen, Doctor Goober Modesty, Philippa King, and Catherine

The mental health charity, MIND, is celebrating 60 years with the “Art - Making a Difference” or M.A.D Art Installation. It is a collection of work by mental health users and survivors and will be open to the public from Saturday 1st - Sunday 9th September 2007 at Draywalk Gallery, Truman Brewery, Draywalk off Brick Lane, London, from 11.30am - 7.30pm. Entry is free, and the nearest tube station is Liverpool Street. Click here for more information.

The “Frame of Mind” Art Exhibition will be displaying artwork of people managing a serious mental illness or brain disorder. It will be held on Monday 22nd October - Sunday 4th November 2007 at Wycombe Swan, High Wycombe, Buckinghamshire.

Philippa King will have pieces of art on display at both of these exhibitions.

*The Causes of Schizophrenia

**Wyatt RJ. Neuroleptics and the natural course of Schizophrenia. Schizophr Bull 1991; 17:325-351.

Genius or Madness? The Connection between Psychosis and Creativity

2007-08-14T01:36:00.000Z

Part Two – Just Where Do You Come From?

As mentioned previously, psychosis and mania are not always bad experiences for people. Many people actually welcome these experiences, feeling that they are a source of inspiration.

Of course, feeling inspired by psychosis can mean different things to different people. For some it will literally mean that they feel that their hallucinations are informative in some way; for example, they may feel that their hallucinations are a form of apparition or vision; a religious experience. They may feel that they are being instructed on how to carry out a certain task. Others feel that their psychosis merely provides a “subject” for their creativity.

Hallucination or Vision?

"The Vision of Time" by Doctor Goober Modesty

Where does this creativity really come from?

Since hallucinations are a product of the persons own mind, the knowledge and the abilities must be their own. Mr Man believed that the voices instructed him on how to play Chess, compose music and how to solve programming dilemmas, but a hallucination can’t tell a person how to do something they don’t already know how to do, because it doesn’t really exist. To suggest otherwise would be to suggest that the voice is from a real outside source and not a hallucination after all. Although auditory hallucinations appear to the hearer to be from an outside source, it is merely a symptom of psychosis.

Some artists use their experiences of psychosis as a subject for creativity, and this can be a beneficial form of therapy

"Medication" by Philippa King

So what role, if any, does psychosis play in creativity?

Psychosis can aid creativity in two ways. As previously mentioned, psychosis can often provide a subject for creativity. The subject is compelling, and as Philippa explains regarding her own art “I could be creative without psychosis but it would not have the same edge to it”. Conversely, creativity itself can be an important outlet for those suffering from psychosis, and can be a beneficial form of therapy.

Also, delusional thinking often gives people confidence. The person could genuinely be a genius, and their delusional thinking could give them the confidence that they would usually lack to believe in themselves; or they could be lacking in talent, and suffering from delusions of grandeur which gives them false confidence. Either way, whether the ability in itself is real or imagined the delusional aspect of phychosis can aid self belief.

“I don’t know if my writing is any good at all and in normal circumstances I don’t believe it is, but I miss that manic self-belief.” - Seaneen

As mentioned previously, Mr Man also gained confidence through his psychosis, and felt that the voices were helping him with various tasks. It’s been a slow process, but Mr Man is starting to believe in himself now, and to find his own identity. I’ve already mentioned how he is becoming more involved in Table Tennis, and that he will be redesigning the website for his club. Having access to the internet means that he can share the computer programs he has written with others, and he has quite a little “fan club” of users who regularly ask him for the latest updates, so he is learning that his abilities are appreciated by real people. His music is something that has taken him a little longer to get back to, but recently he has started experimenting with that also.

But is it necessary to challenge the delusions of an individual? Is it necessary to treat someone experiencing psychosis? Why do some people have a pleasant experience with psychosis while others do not? These questions will be discussed in part three.

Next: Part Three

Genius or Madness? The Connection between Psychosis and Creativity

2007-08-14T01:21:00.000Z

Introduction

For some people, psychosis or mania isn’t actually an unpleasant experience at all, and many people feel that it is a positive source of inspiration for creativity. I first came across this thought when I was emailed by an administrator for the 1 in 4 Forum about the website Intervoice. On the website reads the statement: “Many voices can be unthreatening and even positive” and Professor Marius Romme is quoted as saying “It’s wrong to turn this into a shameful problem that people either feel they have to deny or to take medication to suppress.”

The connection between psychosis and creativity is something I have been meaning to write about for quite some time. Here follows a series of three articles, covering topics relating to psychosis and creativity, such as the loss one feels when recovering from psychosis, identifying the true source of creativity, and covering questions such as: is treatment really necessary? And why do people experience psychosis in different ways?

Part One – When the Madness has Gone

Even for one whom psychosis has been a bad experience, the fact is that the process of recovery is a difficult one with many losses. The recovering person may experience feelings similar to those of grieving, and it can leave them feeling confused about their identity and their role in society. This is an important point to acknowledge when helping someone through this recovery process. For a creative person, the process of recovery can strip them of their confidence and leave them feeling insecure about their abilities.

Consider for example this interesting article written by Seaneen on “Pole to Polar – The Secret Life of a Manic Depressive”

As a creative individual recovering from mental health problems, Seaneen asks some very poignant questions: “Who am I now?” and “How much of my creativity is me, and how much is the illness?”

For Mr Man, the question “Who am I?” has also been a poignant one during his recovery.

Like Seaneen, Mr Man was more intelligent than his peers at school. His mother was told that he was “university material” when he was about 5 years old. Also, like Seaneen, he is a very creative individual; over the years he has composed hundreds of pieces of music. Amazingly though, he suffers from low self esteem.

“I love writing, but I have no idea if I am talented or if I am only any good when I’ve got that manic energy” - Seaneen

Just as manic episodes gave Seaneen the confidence to believe in her own abilities, psychosis gave Mr Man the confidence to believe in his abilities also. Through the whole of his adult life Mr Man has believed that he was specially selected to work for a “company” because of his level of intellect, and yet he believed that much of his knowledge and creativity actually came from this same company through the voices. He believed that he and they were working in partnership with each other, composing music and writing computer programs. He believed that there were others like him, and that his identification number was 4064. This belief has given him a sense of belonging, given him a purpose, and made him feel valued and appreciated. He has felt supported, almost nurtured, and felt that the “company” recognised his potential without him having to sell himself, which isn’t in his nature. It gave him confidence in his abilities, as he received confirmation that he was doing things the right way.

It’s been difficult for him to accept that there is no “company” after all. In accepting that the company isn’t real, he has also had to accept that what he believed to be the very reason for his existence isn’t real either. If there is no company, no special selection, then who is he? What is his worth? Does this mean that his creative work has no value?

This realisation has left him feeling confused and alone; how could he achieve all those things that he once did without the “company” to help him? Just as a creative person with Bipolar Disorder may wonder if they can be creative without mania, Mr Man was left wondering if he had the intellect and creativity to continue with his music and programming without the voices. Just how much was due to his own abilities, and how much was due to the “illness”?

Mr Man has suffered many losses during his recovery, but was it really necessary for him to be treated for psychosis and to suffer those losses? Just how much of his creativity could be attributed to his voices? These are questions that will be discussed in the following articles.

Next: Part Two

The First Three Weeks

2007-08-08T01:58:00.000Z

Continued from “First Hospital Admission”
May 2002 – June 2002

There was nothing major to report during the first three weeks of Mr Mans first hospital stay. No one had any idea what Mr Man was experiencing and it was thought that he was suffering from severe depression. Mr Man did everything that he was asked to do; behaving as the model patient and joining in with all of the ward activities, but during the limited time that I spent with him I could see that really nothing had changed. My husband still wasn’t there, and it seemed that everything he did in the company of others was an act.

"Not as it Seems"

I cannot bear the silence
or the poorly held disguise
or all of this pretending
or the distance in your eyes

by Philippa King

Visiting times produced extremely mixed emotions for me; I missed Mr Man so much and I couldn’t wait to see him, but at the same time I hated seeing him so down and withdrawn. While I was there I couldn’t wait to leave, and yet every time I left it tore me apart to leave him behind. I just wanted everything to be back to normal again.

The stress of the whole situation was starting to take its toll on me; I had started taking antidepressants in the April, and my anxiety levels were constantly high. I was becoming increasingly forgetful; leaving shopping bags in shops, leaving my handbag in café’s, and leaving the car or house doors unlocked. I started going through a verbal ritual every time I left the house: “I have my purse, keys and phone. The windows are shut, I’ve locked the door. I have my purse, keys and phone. The windows are shut, I’ve locked the door” and I would repeat this to myself again and again as I drove away. Often I would doubt myself and I would have to turn around to make sure I had shut the house windows, or I would panic that I didn’t have my keys and then I would realise that if I didn’t have them I wouldn’t be able to drive the car! I was always able to produce a smile though, and not many people really knew what I was going through.

During this time the use of Monoamine Oxidase Inhibitors (MAOI’s) was introduced to Mr Mans treatment, which meant having to avoid certain foods such as cheese and other foods which contained Tyramine*. Mr Man wasn’t very happy about this; his diet was already restricted as it was believed that he was suffering from Coeliac disease at the time. Cheese is one of his favourite foods, and also he was unable to eat his favourite crisps because they contained cheese flavouring. The hospital was very good at catering for his dietary requirements though, and we were told that four weeks would be long enough to know whether it would be worth continuing this treatment or not.

Before his admission into hospital, I had always accompanied Mr Man on his appointments to see his Psychiatrist, and being in hospital proved to be no different. I was told by a nurse what day and time Mr Mans appointment would be, and was asked in the presence of Mr Man if I would be attending. We both agreed that I would.

They were very different to Mr Mans usual appointments, which were held in a small “office” type room at the local Community Mental Health Centre, and included only the Psychiatrist, Mr Man and myself. On the ward the “team meetings” as they were called, were held in a larger room, with armchairs and sofa’s, albeit scruffy ones. Several members of the ward “team” would be present, including nurses and Occupational Therapists. The atmosphere was an informal one with a strong sense of team work between the staff members present. In fact that sense of team work was so strong that to begin with I had no idea which one was the consultant. They would openly discuss treatment options between themselves, including various types of therapies, in front of Mr Man and I. They always asked how we felt about the treatments that were selected, and they made sure that we fully understood what each treatment entailed, providing information leaflets and often even suggesting that I do my own research on the internet, particularly when the MAOI’s were introduced and when the possibility of ECT** was discussed.

I have to say, the first 3 weeks of Mr Mans first admission was a very positive experience. The staff showed respect for the patients, and treated them the same as anyone else. Mr Man bonded with a couple of staff members there, and I really felt that if he could be “mended” it would be there.

Of course, this was a Psychiatric ward in a General Hospital, meant for short term stays. After a few weeks patients were usually sent home or moved on to the Psychiatric Hospital. The night before the team meetings we were approached by a nurse and told the “good news” that Mr Man would be discharged in the morning. Mr Man was obviously relieved, but I was very concerned; I knew nothing had changed.

That night as I drove out of the hospital grounds, distracted by my thoughts, I crashed into a plastic bollard. I had no idea what to do, but obviously I had to move it out of the road before it caused an accident. After moving it to the side of the road I parked my car again and then I went back for the bollard and carried it to the Hospital entrance. Just as I approached the main entrance one of the nurses from the Psychiatric ward was on his way out. As he smiled, curious to know what I was carrying, I burst into tears. I’m guessing he must have been used to emotional relatives as first admissions must be a traumatic time for any family, and he gently probed for the full explanation of my distress.

I explained to him how suicidal Mr Man had been and that I knew that nothing had changed. I explained how his involvement in ward activities was all an act, and that it was no indication of recovery. We must have talked in the car park for at least an hour, and by this time it was getting dark. He listened intently, asked questions, and took my concerns seriously.

The next day was the team meeting. The team actually asked to speak to me separately before Mr Man joined us, due to the report given by the nurse I had spoken to the night before. The Psychiatrist explained that she didn’t realise I had been on “suicide watch” for so long. It was obvious by what I had told them that Mr Man still had a long way to go in his recovery, but since the ward was for short stays only it had been decided that he would be moved on to the Psychiatric Hospital. I explained that I was supposed to be going away in a couple of days to one of our religious conventions, and I was strongly advised to still go. The Psychiatrist felt that I needed the break and the encouragement. Reluctantly I agreed.

*The combination of MAOI’s and food containing Tyramine can be dangerous as it can cause the persons blood pressure to rise suddenly.

**Electroconvulsive Therapy.

Next: "The Truth Revealed"

Untitled

2007-07-22T23:58:00.000Z

I have shed a few tears tonight.

I have such a long way to go in explaining our experiences of when Mr Man was first admitted into hospital. After sharing just a few scant details on Mental Nurse of what Mr Man went through my memories came flooding back to me, and I have to ask myself if I will ever be ready to share our full story or if it will always be too painful for me to revisit.

As the tears rolled down my face I held on to Mr Man and whispered “I’m sorry”.

I’m sorry that I wasn’t strong enough to care for him at home. I’m sorry that I didn’t understand the system enough to know how to stop what was happening. I’m sorry that I didn’t take him away from there. I’m sorry that I didn’t demand that he be treated somewhere else. I’m sorry that I was too exhausted emotionally to take my complaint further after it had been swept under the carpet.

I am so sorry.

If I could give just one piece of advice it would be this: if you have any doubts at all about how your loved one is being treated, seek the support of an advocacy service and ask for a second opinion immediately.

I left it so damn late before seeking a second opinion.

The reason why I recommend contacting an advocacy service is because once I finally requested a second opinion, the consultant made no effort to arrange it for 4 weeks although another consultant only worked next door. This man continually played games with me; I felt so powerless against him and had no idea what to do. The next time I saw the consultant a lady from an advocacy service came with me and she asked about the second opinion. I don’t know what “special powers” these advocates hold, but she got results. An appointment was made for Mr Man to see the other consultant that same afternoon. He was prescribed anti-psychotic medication and it was the beginning of his recovery.

As Time Goes By

2007-07-22T00:22:00.000Z

Thank you to Mslmgarner, who recently posted a couple of questions for me in the comments section. I apologise in advance if my answers cover things that you already know, but your questions are similar to those I have been asked in emails and thought a more in depth blog response might answer a few questions for other readers as well.

Mslmgarner asks:

“How long have you and Mr. Man been dealing with Schizophrenia?”

Mr Man has been dealing with Schizophrenia for a lot longer than I have. He has been hearing voices since his teens, but I didn’t become aware of it until June 2002 – a little over 5 years ago – even though we had already been married for nearly 5 years.

Mr Man wasn’t deliberately secretive about his symptoms. As is common with all sufferers of Schizophrenia, he didn’t realise that what he was experiencing was part of an illness. I know that sounds strange to most people; “hearing voices” isn’t usually considered “normal”, so surely if you started experiencing this you would question it… wouldn’t you? But when hearing voices is combined with delusional thinking, you get a person who has no need to question their own mental health; in their own mind they “know” where the voices are coming from, be that from aliens, a supernatural being, or another source. For this reason a person with Schizophrenia won’t consider it unusual that no one else can hear the voices; they simply believe that they have been “chosen” and you haven’t.

It’s not unusual for people with Schizophrenia to keep their experiences to themselves or for them to go unnoticed by others. They may even deny that they are hearing voices, believing that they have a special, secret arrangement with the voices. This was the case with Mr Man; he believed that he had been selected to work for a company. It was only when his symptoms seemed to take a more sinister turn that the burden became unbearable for him and he confided in me what was happening. By this time he was nearly 30.

Mslmgarner asks:

“How do you deal with his episodes in private and in public?”

Mr Man doesn’t suffer “episodes” as such, as his symptoms are always there. There are two areas of his illness that we have had to learn to deal with: the negative symptoms and the positive symptoms.

It seems that he first started suffering from the negative symptoms soon after November 1999. He was suffering from the Epstein Barr virus, so excessive sleep was expected, but as time went on he began to neglect himself more and more and everyone assumed he was suffering from severe depression. At one time Mr Mans negative symptoms were so bad that I had to wash and dress him, and he wouldn’t eat or drink unless the food or drink was placed in front of him. He stayed in bed for most of the time and became very withdrawn. Obviously being so withdrawn these weren’t symptoms that we had to deal with in public.

As he improved he began to dress himself although I still needed to lay his clothes out for him. These days he just needs prompting or reminding occasionally to change his clothes, but he still hates having a bath. I know it sounds strange but when he was younger he had no trouble with these things at all, but now he seems too preoccupied to think about such “trivial” matters. On top of that there’s the “security” of keeping the same clothes on, and the “insecurity” of having to sit naked in a bath.

As I said, these aren’t really things that require “dealing” with in public, but now that he goes out more these can obviously have an impact on his social life. I try not to stress him too much by demanding that he has a bath every day or two, but if he starts to smell I obviously need to do something about it. Thankfully for both of us, he’s really not a smelly person. I think he appreciates the reminders to change his clothes, as obviously he doesn’t want to draw attention to himself in public, but it’s just not something he gives much thought to.

I first became aware of Mr Mans positive symptoms in 2002 while he was an inpatient in a Psychiatric hospital. His symptoms were obviously very acute at that time and I had a need to understand what he was experiencing, so the emphasis was on talking, understanding, reassuring, and comforting. We spent a lot of time just holding each other and this was obviously in private and in public, as there was little privacy on the ward.

As time went on I learnt that I needed to challenge his beliefs and help him to be able to distinguish between delusion and reality. This wasn’t easy. How do you convince someone that what they believe as fact doesn’t even exist? And let me tell you, a person in the grip of delusional thinking can give you some very convincing arguments. After a while the word “coincidence” starts to wear a little thin.

These days it’s a case of providing a distraction. The reassuring and the challenging are still needed at times but mostly he needs activity to keep his mind occupied. Medication has enabled him to gain “insight” into his illness – in other words he knows that he is ill now and that what he is suffering are symptoms of that illness – but the voices persist and they feed the delusions, so it’s important to keep him distracted from what they say.

In public it’s more a case of support and reassurance, as the voices and delusions cause a lot of anxiety, particularly when with strangers. When Mr Man was very poorly he shouted verbal abuse at people out of the car window a couple of times, but my reaction was more one of shock rather than “dealing” with it! I just try to be a calming influence as best I can; getting frustrated or shouting at a person suffering from psychosis only makes matters worse.

So as you can see, the way we deal with his symptoms has changed over time, due to experience and also due to a change in the severity of his symptoms. I dare say things will continue to change for us as time goes by.

Under Pressure

2007-07-15T02:16:00.000Z

My brother and his family live in Norway, and for the past four or more years he’s been asking me the same question: “When are you coming to visit us?”

As I’ve told him time and time again, I would love to visit him in Norway but Mr Man wouldn’t be well enough for the journey, and he couldn’t cope with being away from the home for more than a few nights, either in Norway or in a respite home.

Everyone keeps telling me how it would do Mr Man so much good if he would go - the fresh mountain air and picnics by the sea; it’s so tranquil – as if one trip to Norway will cure him forever. Now wouldn’t that be great? But back to planet Earth...

Until recently, getting to the part of Norway where my brother lives meant a long drive to Newcastle, followed by a ferry, followed by another long car drive, followed by 3 more ferry trips and car drives – about two days of travelling in all. Now that there is a more direct flight, we would “only” have to drive to Stansted airport which is maybe a couple of hours away, and fly for a couple of hours as well. That’s great. But Mr Man can’t stand being in the car for a couple of minutes, so how exactly am I supposed to get him there?

My brother recently sent me this beautiful picture of the scenery where he lives, and asked me the same question yet again, as if somehow seeing the view will miraculously make Mr Man well enough to go.

When will people understand that their “gentle encouragement” doesn’t help me to find a solution, it just depresses me? I’ve learnt to accept my situation the way it is, so why can’t other people just accept it as well? Why do they have to keep reminding me of what I can’t have instead of encouraging me to be grateful for what I’ve got?

I have the same problem with my family when it comes to babies. As I’ve explained before, when Mr Man and I married it was actually me who was the sick one. From the moment we married my family asked me nearly every week when we were going to start a family, especially my Mum. I would try to explain to her that I didn’t think we would be able to cope because of my health problems, but every week she would ask again and we would go through the same conversation every time. In the end I had to explain to her how painful it was for me to discuss it. I didn’t need persuading; I wanted a baby desperately, but I just wouldn’t be able to cope. She finally let it go.

Then of course Mr Man became ill too. We always said we would review the baby situation when we had been married for 5 years, but on our 5th anniversary Mr Man was an inpatient on a Psychiatric ward. He had been there for 5 long months and had attempted suicide 3 weeks earlier, and at that time I couldn’t imagine him being well ever again.

Strangely, I remember sitting with him at the hospital and out of the window I could see two metal brackets attached either side of a post for hanging flower baskets, and I thought how much it looked like a womb and ovaries. Empty ones. Barren. I would sit there every evening looking at the same sight. A constant reminder of my situation.

Of course, Mr Mans health has improved dramatically since then, and I have gone through various stages of remission and relapse. For a while we seriously considered having a baby, but for some reason we didn’t hear about this “well known fact” that Anti-Psychotic medication causes fertility problems until Mr Man had already been taking them for a few years. Despite being childless and of child bearing age, no one considered it important to tell us. We started going to a fertility clinic for investigations, but since I relapsed again we cancelled our other appointments.

It’s probably because we seriously considered parenthood for a while that I now have problems with my family going on about children again.
“You’re not getting any younger, it might be too late soon”
“Thank you Mum, I’m aware of that”
What exactly am I supposed to do about it? I don’t have a magic wand. I can’t make Mr Man well. I can’t make myself well. I can’t make us fertile.

So, as I said earlier:
When will people understand that their “gentle encouragement” doesn’t help me to find a solution, it just depresses me? I’ve learnt to accept my situation the way it is, so why can’t other people just accept it as well? Why do they have to keep reminding me of what I can’t have instead of encouraging me to be grateful for what I’ve got?

“Mad” or “Bad”?

2007-06-28T20:15:00.000Z

In my new (and so far neglected) blog “Do I Look Like I Care?” I received a comment from a reader who calls herself Kim. Kim said, in part:

“Ann* is very unwell; she is a paranoid schizophrenic, and has not had her depot injection for 8 weeks. She is a real danger to herself and others, and is getting rather aggressive. She assaulted 2 nurses up at the local unit last week, they called the police, and the unit said they couldn’t have her as she was being violent and the police wouldn’t have her as she was mentally unstable, so sent her home. Now we (her friends) take turns looking after her, it’s one crisis after another, and we are all starting to fear for our own safety. We have contacted all the relevant people and no one will take any notice of us as we are patients under the same team. We are at our wits end, and getting unwell ourselves.

They won’t do anything until she puts an axe in someone else’s head or her own, by which time it’s too late. They will spend millions on a public enquiry, where if they had done their job properly no one would get hurt and would save lots of money.”

*Not her real name.

I feel this experience highlights two major problems which I have written about previously: the difficulty in accessing services for people with mental health problems - even for those who are familiar with how the system works; and also the fact that the responsibility for caring for such ones often falls on those who are neither equipped nor qualified to do so. But also, I can’t help but wonder if Ann will end up in a similar situation to Justin.

Justin is a young man suffering from mental health problems. He set fire to his flat and as a result was given a discretionary life sentence.

Slurry tells us regarding Justin:

“It was his mental illness which led up to the event. He was not being looked after by the CMHT very well at all. We (his friends) knew something big was going to happen so we rang the CPN many times in the week leading up to it. Never did they come and visit Justin or speak to him like they promised, then it was too late.

He does not do well in the prison system, as it’s the wrong place for a mentally ill person, and I am so bitter at the system which failed him and so many others.”

Now don’t get me wrong; I’m sure that there are people with mental health problems who are just as capable of breaking the law as someone without these problems, and being ill isn’t necessarily the cause of someone breaking the law. But in both of these cases, and many like them, the deterioration of the person’s symptoms were obvious to others, to the extent that friends feared that at some point the individual would take extreme action which would usually be completely out of character for them.

This point is important for two reasons:

Firstly, the general public wrongly presume that people with mental health problems are unpredictable and could go off on a murdering spree at any moment. The two cases above clearly show that if people bother to take notice, the warning signs are there.

Secondly, the CMHT were obviously unable or unwilling to act on the concerns of others. This is either because their resources are desperately lacking or because they don’t take the concerns of others seriously. My guess is that it is a combination of both.

So the question is: how many people are in prison because they have been failed by the Mental Health System? I know we often hear in the news about people on trial who have had a psychiatric assessment, and I’m sure that this is often an attempt to avoid the full penalty for their actions. But what about those who are genuinely ill, and who were well known to their local CMHT before the incident? And even neglected by their CMHT before the incident?

“Service users” are often seen as faceless objects.

"Faceless Care" by Philippa King

Not quite out of the woods

2007-06-26T16:59:00.000Z

The last few days Mr Man hasn’t been feeling very well. The voices have become intrusive again and he’s been anxiously pacing the floor and standing by the window checking for people watching the house.

I know I have to expect that his symptoms will fluctuate, but it’s so disheartening when he’s been doing so well. I just hope that this isn’t a result of the extra responsibilities he has taken on recently, and I hope that he will still feel able to manage them.

Thinking Blogger Awards

2007-06-25T13:23:00.000Z

Thank you to Seaneen who has awarded me with the “Thinking Blogger Award”. What this really means is that I have simply been tagged with a glorified meme, but I feel honoured just the same!

According to the rules, you can only select others to receive this award if you have received it yourself, and you must link to the origin of the meme.

I would say that many of the blogs I read are enlightening or interesting in some way, but to be given the “Thinking Blogger Award” I suppose they really have to be ones that either inspire me to write my own thoughts on a subject, make me question my own opinions, or make me think deeply in some other way. Bearing this in mind, and in no particular order, I nominate as follows:

Mental Nurse – often inspires me to write of my own experiences, and has helped me to realise that some psychiatric nurses actually care about what they do.

The Police Inspector Blog – has helped me to see the human side of officers who try hard to protect the public, although often with their hands tied behind their backs.

Pole to Polar – no other blog fires me up in quite the same way and makes me want to walk the streets of London in protest!

Forensic News Blog – makes me think in more of an academic, scientific kind of way. A fascinating blog, with content that often leads to additional research on my part.

A Long Walk to Forever – thought provoking in a beautifully simple kind of way. Her quotes often leave me speechless.

To all of the above:

Congratulations! You’ve won a

Should you choose to participate, please make sure you pass this list of rules to the blogs you are tagging. The participation rules are simple:

1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think.
2. Link to this post so that people can easily find the exact origin of the meme.
3. Optional: Proudly display the “Thinking Blogger Award” with a link to the post that you wrote.

Some Updates

2007-06-18T22:55:00.000Z

The daughter of the man mentioned in my post entitled “Helpless” managed to get her Dad to the Community Mental Health Day Hospital last week, and he saw a psychiatrist there. His medication has been changed, and his daughter bought him a mobile phone so that she can ring him daily. Despite having a full time job and being a single parent with two children to look after, she has realised that she now has to take control of his care, and has decided to go with him to all of his appointments.

The strain of the previous weeks events, coupled with the realisation of her responsibilities as her Fathers carer, finally took its toll on her over the weekend, and she broke down in tears. I spoke to the new* Carer Support Worker at the CMHT today to get some support for her.

Funnily enough, the first question I was asked was “Who is her Dads Care Co-ordinator?” I don’t understand why people who actually work in mental health automatically presume that people always have access these services, when they know full well that these services are limited and many people are going without. Anyway, the lady said she would look into the matter and find out why he doesn’t have a CPN, and also contact the daughter to offer her support.

In other news…
Mr Man is doing exceptionally well at the moment. He keeps surprising me by taking on more and more responsibilities.

In my last update I wrote that as well as attending Table Tennis practice regularly, he was also taking part in the Summer League and helping out with coaching. Despite the Summer League and the coaching being held on the same night, and thus taking him out of the house for 4 ½ + hours on that night, he seems to be coping with that very well. He has also started going to practice twice a week now instead of just once a week, and this week he has decided to go to coaching nights twice a week as well! That will take him out of the house four times a week!

His offer of redesigning the club website has been accepted, which now means he is a member of the Clubs Committee, and last week he attended a Committee meeting. After the stress of having to speak up at the meeting about his plans for the website, he began to feel very unwell and the voices started becoming very intrusive. He excused himself and sat in the locker room for a while and had a drink, and then returned when he felt able to. Obviously he is still having problems from time to time but he is coping with his symptoms much better now.

And finally, Mr Man has also been asked to Captain his team next season. It seems that since it was announced at the Committee meeting that Mr Man will be able to save the club nearly £200 a year in hosting fees, he has become flavour of the month!

*This new position is something I had been meaning to write about for ages. I suppose now it is a topic for my new blog.

Too Little, Too Late

2007-06-16T00:02:00.000Z

Following on from yesterdays post entitled “Helpless” I would like to continue part of the discussion that followed in the form of a blog post, as I feel that the struggle to access services for people suffering with mental health problems is an important issue which many people may be unaware of.

Catherine said:

“Your post left me feeling sad and empty inside. Recently I have read a lot of posts coming from bloggers saying that the very people that are supposed to help them, aren’t.”

Catherine, the whole situation leaves me feeling sad and empty as well, but also angry. As you have found from reading other blogs, this isn’t an isolated case, and this is an important issue that mental health services need to address.

“Is this just what happens when you cannot fight for yourself? Everyone ignores you?”

The fact that people find it so hard to access services even when they have someone fighting for them suggests to me that there must be people on their own who are not getting help at all. I suppose this could be for a variety of reasons; for a start, people working in mental health aren’t psychic, so unless a person states that they need help no one will know. But I feel that once a person is known to a CMHT they should be provided with an adequate support system, and this is where they are being failed.

This leads me to Slurry’s comment about the CPN.

“I totally understand what you were saying in that post. In regards to “where is the CPN” etc, if it’s not Mon-Fri 9-5 they don’t want to know, even in those hours they probably wouldn’t want to anyhow.”

Slurry, you’re right, the fact that Community Psychiatric Nurses only work Monday–Friday, 9-5 is less than helpful. But the reason why I asked the questions: “Where is this mans Care Co-ordinator? Where is his CPN? Where is his Care Plan?” is because I don’t think he even has any of these things, although he should have.

The problem is that “Service Users” are not made aware of the services available to them or what help they are entitled to, and even the most caring and supportive of families can not demand the services for their relative that they have no knowledge of. This is a problem that Mr Man and I have experienced ourselves; Mr Man was not assigned a CPN until he had been discharged from hospital after his third admission, in which he had been admitted under a section of the Mental Health Act.

So with regards to the man suffering from Bipolar, the question is this: has he been left without this support because the CMHT wrongly assume that his family, with no training, will be able to cope with the responsibility of caring for someone with serious mental health problems? Or - and this is a far worse scenario - are people with mental health problems, including those who live alone, routinely left without an adequate support network from the CMHT until it is deemed impossible to “get away” with it any longer, such as after multiple hospital admissions, or after the person has been hospitalised under a section of the Mental Health Act?

It is my belief that as soon as it becomes apparent that a person is suffering from a serious mental health problem, they should be assigned a Care Co-ordinator, a CPN, and have a Care Plan drawn up. Surely prevention is better than cure? If this man had a CPN regularly calling to see him, I dare say his condition wouldn’t have deteriorated so badly before anyone noticed. If he had a Care Plan, his family would have known exactly what to do and who to call when he reached crisis point.

It makes me so angry that relatives have to fight so damn hard to get help for their sick loved ones, but who will fight for the person with mental health problems who lives alone?

If you want to be depressed even further, please read this article on Mental Nurse, and in particular the article linked to therein.

Helpless

2007-06-14T22:33:00.000Z

I think my first experience with someone with mental health problems was when I was seventeen. I think I may have been on my way to the shop that was just over the road from where I lived when I saw a woman, obviously in a distressed state, walking down the road talking to herself. I went after her to see if I could help.

I remember the woman wasn’t dressed properly, although I don’t remember what she was wearing. She had slippers on her feet, and she held an unlit cigarette to her mouth. As she walked down the street she looked straight ahead, not even noticing my presence. She kept repeating herself over and over again saying “My husband has left me, my son has gone, and I don’t know where I am” I remember the inflection in her voice so clearly as if it was yesterday. I kept asking her if she knew her address. Could I take her home? Was there someone I could call for her? She didn’t see me or hear a word I said; she just carried on walking and talking, repeating the same thing over and over again. When we got to the bottom of the road, she crossed over and started walking back up the other side. “My husband has left me, my son has gone, and I don’t know where I am” I had no idea what to do to help her. I didn’t want to leave her to get help because I wouldn’t have been able to find her again.

"Portrait of a Woman Standing in a Street at 11.23 am"
by Phillipa King

I saw a Vicar sitting in a parked car going through some paper work. “Great” I thought, “he’ll know what to do”. I tapped on the window and he wound it down. I explained to the Vicar about the woman, pointing her out to him as she walked past on the other side of the road. “Yes, it’s very sad” he said looking over at her, and while he gave me a sermon on how sad it was she wandered off and I lost her.

I went inside feeling very disturbed by what had just happened; not just because the Vicar seemed so unwilling to get involved, but because I had no idea how to help the woman and I was worried about her. I felt utterly helpless. The experience stayed with me for a long time afterwards.

These last few days I have struggled with similar feelings, as a man I know who suffers from Bipolar took a life threatening overdose at the weekend. He was violently shaking and vomiting, hallucinating and passing out. When the ambulance arrived he refused to go to hospital, and so the ambulance crew left him behind.

Like the Vicar, his brother refused to get involved and I, after all my experience with Mr Man, still had no idea how to help. The best I could do was to suggest that his daughter call the out of hours doctor and explain the situation, hoping that the doctor would then make the necessary arrangements for a psychiatric assessment, but her Dad said he would never forgive her if she had him admitted, and he headed for the door. The last thing she wanted was for him to fall unconscious somewhere and to choke to death on his own vomit so, worried for his safety and feeling emotionally tied, she agreed not to call anyone. It seemed the only thing his family could do was to take it in turns to stay with him and hope that he recovered.

The feeling of helplessness in a situation like this is compounded by professionals passing the buck; an ambulance crew who drive away instead of calling an ambulance officer or a GP; then two days later a psychiatrist who refers him to a GP, and a GP who merely “urges” him to go to the hospital the next day for a blood test. If professionals are this unwilling to help, who else is there to turn to? Where is this mans Care Co-ordinator? Where is his CPN? Where is his Care Plan? What does this man have to do before his needs are taken seriously?

If it’s as difficult as this for a man with people looking out for him to get help, how many more are slipping through the system without a person who cares for them to demand services on their behalf?

The Great and the Small

2007-06-14T00:52:00.000Z

Trying to catch up on some blog reading, I came across an article today written by Bipolarmo on Mental Nurse, entitled Sleeping with the Enemy. It’s about the stigma surrounding mental health - in mental health. In the one place where you would expect to find understanding, some nurses clearly have a poor attitude towards those with mental health problems. It seems that on some wards, if one of the staff members suffers* from mental health problems they fail to gain respect from their co-workers and become something of a laughing stock. Such an attitude towards fellow workers with mental health issues is obviously a reflection of how they feel about people with mental health problems in general, and raises the very serious question of whether such ones should work in mental health.

I've seen this “them and us” attitude in nurses on the ward myself. They wrongly presume that they are immune to the possibility of ever having mental health problems of their own, and view themselves as superior to such “weakness”. As Bipolarmo so rightly points out, how is an attitude like that supposed to help break down the stigma surrounding mental health? Why do some nurses still have this archaic attitude? Did they get their training from cave walls? If mental health staff haven't realised by now that the patients are neither “stupid” nor “weak” then how can we expect the general public to understand?

I think that people who have experienced mental health difficulties themselves would undoubtedly make very good psychiatric nurses - certainly they would be very approachable. In my experience, people with mental health problems are often intelligent; sensitive to peoples needs; gifted, and deep thinkers. I can’t tell you how angry it makes me feel to know that some people who are trained to help these ones view them with such contempt. Do they view people with physical diseases this way? In reality, some of the patients on psychiatric wards are more intelligent and often more gifted than many of the nurses. Rather than looking at people with mental health problems with disdain, nursing staff should feel humbled realising that mental illness, like any other illness, knows no boundaries and can affect the small and the great alike.

You know, when Mr Man was first in hospital we both had such a traumatic time, both with coming to terms with his illness, and with coping with the attitudes of some of the staff. One day this girl smiled at me and started chatting. She asked me how Mr Man was doing, and then asked how I was coping. I was shocked because Mr Man had already been on the ward for quite a while and she was the first person to ask me that. Do you know who she was? She was a patient who had just been moved to the Acute ward from ICU. She went on to tell me that when she is well again she wants to work in mental health. I sincerely hope that she has achieved her goal.

*I use the term “suffers” meaning someone who has previously suffered, or someone with a diagnosis of mental illness which is obviously under control, allowing them to function as well as any other individual who may occasionally have recurring problems with a physical condition, such as a back problem.

Fame Beckons

2007-06-06T16:17:00.000Z

Well, that’s a little bit of an exaggeration, but I have been asked to speak on the radio about carers issues during Carers Week, which is next week. I declined, as speaking publicly isn’t really my forte, and getting up early in the morning even less so! Personally I find it easier to write what I want to say as it gives me more time to think over my words. Regular readers will know that I often edit posts several times even after they have been posted, but once a word has been spoken it can’t be changed. I can’t say I’m not flattered though.

This all came about due to a Carers Reference Meeting that I attended last week, the purpose of which is for services for Mental Health service users and their carers to be discussed and developed. The experience was enlightening, and I will definitely go again. I’m glad to see that services are slowly improving and are better now than what they were when Mr Man first became ill, and it’s nice to know that my experience can be put to good use and that I can have a say in services which are being developed for the future.

I have written an article about carers which the powers at be have decided is good enough to use, although I’m not sure yet how it will be used exactly. I won’t post the article here as I feel that this blog is starting to steer too much towards carers issues and my complaints about lack of services rather than our experiences in dealing with Mr Mans illness and how he has been treated by Mental Health professionals.

I have however, decided to create a new blog where I can write about these kind of issues. The blog is entitled “Do I Look Like I Care?” as I would like to draw attention to the fact that carers come from all walks of life and can be any age, male or female, and cannot always be picked out from a crowd. From now on, this new blog is where I will discuss any complaints about services, and I will also try to post an update each time I attend the Carers Reference Meeting.

And On a More Positive Note…

2007-05-26T00:56:00.000Z

My last post left me trying, unsuccessfully, to chase the Black Dog away for the rest of the day. Cinnamon Swirls didn’t fix it, and neither did driving up and down the dual carriageway at 70mph with Craig David damaging my eardrums. But when I picked Mr Man up from his table tennis practice tonight, all my sadness seemed to melt away as I listened to him enthusiastically detail his evening.

Mr Mans table tennis season came to an end last month with his team finishing in second place in division two and with him just narrowly missing third place for the average number of games won. Considering he had two relapses during this time (one caused by stress and the other due to a medication change) I think he did amazingly well. Next season he will go up into the first division.

Last summer he didn’t cope so well once the season had finished as he had nothing to focus his mind on, but I’m pleased to say that now his club have their own dedicated premises so they will be able to stay open for the whole summer. A summer league has been organised, which Mr Man is taking part in, and the premises can be hired throughout the summer for practice.

I am amazed at how well Mr Man is doing at the moment. When I think back to the beginning of the season, he didn’t want to mix with players outside game nights, and he often didn’t want to go to practice nights either. When he did go he only stayed for about 45 minutes. He started going more regularly when he started losing games on game nights! After a while he increased his time at practice nights to an hour and a half, mainly for my benefit, so that I would have time to see a friend for an hour in between dropping him off and picking him up. He started chatting more with other players, and at the summer league earlier this week he even exchanged numbers with one of them! His new friend text him today, and they arranged to go to practice earlier than usual, so he was there for two hours this evening. His friend can’t make it next Friday though, so they’ve decided to practice together on the Saturday!

I know this probably sounds like nothing unusual to other people, but to me it is a real breakthrough. Mr Man hasn’t interacted with others as well as this since about 2001.

He played really well tonight. Now that he is taking Citalopram he seems to be coping much better with his anxiety, and no longer needs to use Diazepam, so his reactions are much quicker. Tonight he outplayed a premier division player who won 85% of his games last season! Not surprisingly then, Mr Man has been asked to help out with coaching, which he has agreed to (and seems to be looking forward to), even though the summer league is on the same night of the week, so it will mean being out of the house for about 5 hours on that night! I asked him if he thought he would be ok, but he didn’t seem worried, he just said “Well if I don’t cope very well I’ll just tell the bloke who organises it that I’m not very well, he’ll understand”. This surprised me as Mr Man doesn’t usually like to admit that he is unwell, in case people ask what is wrong.

He has also decided that he is ready to play in two leagues next season, which will mean more nights out of the house, and he has volunteered to redesign the club website, and to update it weekly, so he has lots of things planned to keep himself busy and his mind occupied.

I am so proud of him. He has shown amazing strength and courage.

Coup de grâce

2007-05-25T13:43:00.001Z

2002

We lay in bed talking last night. Mr Man told me that the last time he met with his Dad he had asked him about his illness.
“What did you say?” I asked.
“I told him about the numbers thing. He asked me if the voices ever give me the lottery numbers!”
I laughed.
“I’m not really sure how much he knows about my illness” he continued.
“You could always direct him towards my blog, although I’m not sure how he will feel when he reads that I wanted to kill you!” I joked.
Then the conversation turned serious.

I never wanted to be without Mr Man, I just couldn’t bear to watch him suffer any more. He had already been in hospital for 6 months, and had come home no better than when he went in.

Recalling how I felt I started to cry.

I didn’t know how I could help him. I had let him go into hospital in good faith, thinking that the staff would care for him and make him well. In reality he had suffered more in their hands than at home. They called him a liar, mocked him, humiliated him, criticised him, cornered him and argued with him, obviously aggravating his already debilitating symptoms. The consultant was sadistic, and deliberately caused him physical suffering by keeping him on medication that caused him pain, but offered no relief of the actual symptoms. He was visibly amused when I tried to challenge him.

So many times I wanted to take him away from that place, but where to? What did I have to offer him that would make him well?

After everything he had been through I was relieved to have him home again, even though it meant 24 hour care. My friends tried to tell me that it was too much for me, but I wanted to do it. I showered him in love more than ever before, trying to make up for the suffering he had endured at the hands of the hospital staff. I felt I had failed him by not being able to protect him from them. My complaint went nowhere; the people at the top don’t listen to us little people.

Mr Man had harmed himself more often on the ward than at home. The only time he harmed himself at home was when I listened to their advice, and allowed him to go to the toilet on his own. I seemed to understand his illness better than they did, and yet I had no idea how to relieve his suffering; I only knew how to show him love and keep him safe. But that wasn't enough.

He continued to suffer, and at that time I believed that he would never be well ever again. I felt selfish; I knew he wanted to be dead, but I was forcing him to face his waking nightmare with no prospect of relief. I wanted to end it for him.

I could never have imagined that I would now be lying in his arms and laughing about his symptoms with him. I’m so glad that I didn’t follow through.

Related posts: Questions from Readers

What are you trying to say?

2007-05-11T14:38:00.000Z

Today I was checking MyBlogLog, which lists the number of views this blog has had in the last 24 hours, what readers have clicked on, and how they found my blog.

One person got here by doing the following search in Google:

“Schizophrenia long winded letters”

Medication Update

2007-05-03T21:51:00.000Z

It’s been a while since I have written a full update on how Mr Man is doing and recent appointments and such. At the beginning of October I wrote how Mr Mans Risperdal (Risperidone) had been changed to Abilify (Aripiprazole) which he now takes in addition to the Clozaril that he has been taking since 2003. The change over period was a bit shaky, with Mr Man becoming quite paranoid and delusional, believing that our visitors were spies and questioning whether he was really ill or not. I had to keep a closer eye on him than usual for a little while, especially at medication times, as once he starts down that slippery slope of paranoia and delusion he is likely to start skipping medication secretly, which then of course leads to all kinds of problems.

It’s quite hard to gauge how much the Abilify has helped with Mr Mans positive symptoms as the changes have been gradual over a period of 7 months now. Also, for the two months before the switch these symptoms had worsened due to being on his own for two nights when there were no beds at the respite home, so to compare fairly with the Risperdal I would have to think back to over 9 months ago, which is quite difficult. It’s very obvious that the negative symptoms have improved now though and he has fewer side effects than before; he is usually more alert and less drowsy now, and his concentration is much better. In fact over the last 6 months or so he has accomplished a great deal and generally seems more motivated to engage in his hobbies. He has even talked about working again, and is keen to start his own web design business, although only if he can work from home and never leave the house!

I would also say that he is starting to interact better with more people now. Although he still can’t really cope with too many people all at once, he is definitely more willing to have company now and the list of individuals that he feels comfortable with is slowly growing.

One thing that the medication change hasn’t helped with is Mr Mans growing levels of anxiety. It’s difficult to say whether or not this problem still would have continued to worsen if he had stayed on the Risperdal, but the anxiety in itself isn’t a new problem. As I mentioned previously, Mr Mans CPN is taking this problem much more seriously now and last time he visited we talked about it at length. If only we had known more about anxiety when Mr Mans problems first started to escalate. We were using gradual exposure when we first started to tackle this issue, probably back in 2004, but Mr Mans anxiety suddenly and dramatically increased while he was out of the house on his own one day, and since then he hasn’t had the confidence to try it again. What we didn’t realise at the time though is that this experience is common and is known as the “anxiety burst”. Apparently, what we should have done is continue with the exposure, but at the time I didn’t know this and I was worried about pushing Mr Man too much and causing a relapse of his symptoms.

We saw Mr Mans Psychiatrist recently and discussed this ongoing anxiety problem. She decided to introduce an antidepressant called Citalopram, which is an idea that has been on the cards for a long time for various reasons but she felt that Mr Man needed to be more stable on his other medications first. Citalopram is the antidepressant that I take myself, and is well known for helping to control anxiety. Also, his Psychiatrist mentioned that it can help with “compulsive tendencies” as she called them, which is another problem that Mr Man has been suffering from. The most intrusive compulsive thought that he has, which is compounded by the voices, is that he feels he needs to continually add numbers together, such as 1 and 1 is 2, 2 and 2 is 4, 4 and 4 is 8, and so on, until he reaches 65,536. He always stops at that number and then starts all over again. When I asked him why, he said that there are 65,536 numbers that can be represented by 16 bits in binary. Now, binary is a concept way over my delicate little brain cells, but apparently it begins at 0 (zero) and the highest number in 16 bit binary is 65,535, which is 65,536 numbers in total including zero. I still don’t really see the connection myself, but it all makes perfect sense to him, and the more I said I didn’t understand the more detail he went into which confused me even more.

I can see why people say there is a fine line between genius and madness.

About This Blog

2007-05-01T22:57:00.000Z

Today I have received the following comment from an Anonymous reader. I’m aware that other readers may feel the same way, and so I have decided to respond in a blog post.

It's really horrible how you people act as if being a schizo is such a terrible thing. I'm schizo and if I'd ever saw my wife writing in a blog like this because of my "condition" I would ask for a divorce.

I’m really sorry if the content of my blog has offended you in any way. Mr Man is well aware of this blog, and in fact encourages me to write it. Let me assure you that I have the utmost respect for Mr Man and I love him unconditionally. I am often amazed by his strength and courage, and I don’t view his “condition” as a weakness in any way at all.

I don’t know what your personal experiences are with Schizophrenia, but I know that some people view the condition as a positive experience, feeling that the psychosis inspires them to be creative. Unfortunately in Mr Mans case “being a Schizo” really has been “such a terrible thing” for him, which is something that I haven’t yet fully covered in my blog.

There are many reasons why I decided to put our experiences down in writing. One of those reasons is to make people aware of how badly mental health patients are treated sometimes, both by so called health care professionals and by the general public. Also, by reading this blog I hope other carers of people with Schizophrenia are strengthened by knowing that they are not alone and that things do get better.

I’m sorry if that statement offends you. I use the term “carer” not because Mr Man is a burden, but because there is no denying that he needs full time support. And I say “I hope carers are strengthened” because when the person you love is ill beyond recognition the pain is unimaginable. And I say “things do get better” as if things were terrible at one time, because they were.

This blog isn’t all about my own suffering though; I want people to understand what it is like for the person suffering from Schizophrenia as well. Whatever emotional pain I have experienced watching Mr Man suffer is nothing compared to the pain and fear that Mr Man has endured whilst suffering from these delusions and hallucinations. I think Schizophrenia is greatly misunderstood, and I hope that by writing this blog I can dispel some of the misconceptions that the public have. I want to raise awareness about the condition.

I also should add that although Mr Mans illness has been very hard for both of us to cope with at times, it has also brought us closer together, and in that respect it has had a positive effect on our marriage. I am aware that many marriages end in divorce when either the husband or wife suffers from a mental illness of some kind. I hope that my blog gives out the message that marriages can survive mental illness and that something destructive can be turned into something constructive.

Despite the title of my blog, I view Mr Man as a man (an amazing one at that) fighting Schizophrenia, not simply as “a Schizophrenic” with no other identity of his own. The reason why I titled my blog that way is partly because it rolls off the tongue easier than “The Wife of a Man with Schizophrenia” which seems a bit long winded. Also, although many of my readers are either sufferers, carers, or mental health workers, I hoped that the title would be punchy enough to attract “clueless” people who may learn something by reading this blog, and I’m glad to say that I have previously received comments which confirm that this is the case.

Once again, I sincerely apologise if my blog has caused you offence. I hope I have explained myself adequately. Thanks again for your valued comment.

So Blessed

2007-04-30T00:59:00.000Z

I can’t help thinking tonight how blessed I am to have Mr Man. I have heard such awful tales recently of loveless marriages, and relationships and marriages that have failed. A lot of people that I am close to have been hurt so badly, or have never found love at all; it seems love is often far more complicated than “boy meets girl, boy and girl fall in love, boy and girl marry, boy and girl live happily ever after”. I think I have been very lucky.

I remember when I was a very little girl, my Dad telling me that if a man loves me he should treat me like a lady, opening doors for me and walking on the outside of the path. It is probably the most important lesson he ever gave me, and my Dad treated me that way himself.

Mr Man did all those things for me and more. He was the perfect gentleman in every way, and so romantic. In a very short space of time I knew that I wanted to marry him and be with him for the rest of my life. But what if we had never met? Would I be alone? Would I be in a loveless marriage, or on the brink of divorce? Many people say “I just knew that he/she was the one”, but many people get it wrong.

Ten years on we still kiss and cuddle on the sofa. We still hold hands when we go out. We still say “I love you” every single day. I’m still amazed by the way the sun catches his eyes and makes them light up like sky blue topaz. We still leave little messages for each other around the house. I still miss him when I go out for the evening and I’m not with him. He’s still my best friend.

I sometimes wonder at the miracle of love. How did we get it so right?

My Second Letter of Complaint

2007-04-10T19:08:00.000Z

I’m really sorry that this blog seems to have become all about my ongoing complaint, rather than all issues relating to Schizophrenia and Mental Health care in general.

After receiving a letter from the Chairman of the Trust this morning I have been really angry all day. All I keep thinking is “How dare you! Don’t you dare try to sweep my complaint under the carpet again like you did last time!” and I’ve just been pacing the floor all day because I’m so angry.

I’ve written my letter of response anyway, and I would really appreciate some feed back on how it comes across and if any of it should be changed.

“Dear [Mr Scumbag],

Thank you for your letter dated 4th April 2007. Like you, I have also decided to copy this letter to all parties concerned, including [the name of], the Manager at [the respite home], and [the name of the], Complaints Manager.

Personally I find it completely inappropriate and unprofessional to point out the supposed errors of an individual in a letter and then forward it to so many people, thus undermining their authority on a particular subject in the eyes of others, but seeing as you have set the standard in this regard I presume you have no qualms with me doing likewise.

As you so rightly pointed out, the reductions in your budget which took place last year did not affect the funding of [the respite home], but to say that [the respite home] has been “wholly unaffected by those changes” is inaccurate to say the least.

As you well know, [the respite home] offers a range of services as well as short term respite, including but not limited to rehabilitation for individuals who have become less independent through prolonged stays in hospital, with 24 hour support. Previously [a different home] also provided this service, with a total of 10 beds, 6 of which included 24 hour support. Since the “reconfiguration” of services – or cut backs in layman’s terms – [this other home] can no longer offer 24 hour support to any of its users, and provides only 4 beds for rehabilitation, 6 fewer than what was available previously.

[The respite home] is now the only service in the North of the county which provides this kind of 24 hour support for service users. In addition to this, there are obviously a great deal more people on the waiting list for rehabilitation at [the respite home] who would previously have stayed at [the other home]. In response to this, the Manager at [the respite home], [A N Other], obviously had to find ways to accommodate for this increase in demand, and so it was decided that one of the respite beds would be used for this purpose, leaving only one respite bed.

It is my understanding that this decision was made partly to fulfil demand for rehabilitation beds, but also because the respite beds were actually being underused. This brings me to the second point in your letter which was entirely false.

You state that [Mr Man] only used the services at [the respite home] twice last year, and that the reduction in this provision was based on this. I can assure you that [Mr Man] stayed three times last year, and I am happy to provide the dates of his stays if you wish me to. In fact I actually needed him to be able to stay five times last year, and I am outraged to learn that the respite beds were being underused when I needed to take advantage of them so badly. Until my recent conversation with [the Manager at the respite home] I have always been led to believe that we were entitled to only three breaks a year and no more. I wonder how other service users and their carers would feel at knowing that services which were so sorely needed were going to waste by not being offered to them.

Indeed, rather than [Mr Man] having his respite stays reduced due to lack of use by us, it is a fact that all service users who use [the respite home] have had this provision reduced.

If you are sincere in believing that your false statements are true then I am more than a little disconcerted that you appear to be so unaware of what goes on within your own Trust, and unaware of how changes to one service can directly affect another. I would appreciate you taking a little more interest in the matters at hand, rather than trying to neatly sweep the whole issue under the carpet through denial, which, in my previous experience, seems to be the usual course of action by the [county] NHS Trust.

Finally, I would just like to add that I have spoken to [the Manager at the respite home] and she has been most obliging in allowing [Mr Man] to stay at [the respite home] at least three times a year. I am very grateful to her for accommodating our needs in this way, but would like to stress that the purpose of my original letter was to highlight with our own personal experiences as an example, how cutbacks in Mental Health Services affect all service users and their carers, not simply to procure extra respite breaks for [Mr Man] and myself.”

There is so much more that I want to add to this letter, mostly insults, but I’m doing my best to refrain! I really wanted to add something like: “I find your denial patronising and insulting to my intelligence, and I wonder what it is that you have done in your life that was so great that you presume you have the right to treat another individual in such a disgraceful way.” But I thought that was a little too “Elizabeth Bennett”!

More Responses to “The Letter”

2007-04-10T14:40:00.000Z

Once again it’s been ages since I last posted, and I have so much to write about that I hardly know where to start. It seems I have another strong letter to write, this time to the Chairman of the NHS Trust in our county, as I have received a response from him regarding “the letter” which has made me furious. This is the most recent response after a long line of letters and telephone calls; mostly by people who I never sent a copy of the letter to in the first place.

Following the response I received from the local MP to “the letter”, I then received a letter of response from the Acting Manager for the local Community Mental Health Team. He wrote to acknowledge receipt of my letter and to inform me that the issues would be looked into, and that I would receive a full response within 20 working days. It was obvious by the content that that he had misunderstood my letter and taken it as a complaint about the services themselves rather than a complaint about the lack of services due to cut backs.

This was proved true by the fact that I then received another letter, this time from someone who I hadn’t even sent a copy of the letter to, which was the Complaints Manager. It felt very strange to receive a letter from her, and to see her name in print again after so many years. The last time I spoke to her was in October 2002 at a meeting which included her, the Ward Manager from the hospital that Mr Man was a patient in at the time, and the Medical Director. The Complaints Manager is a very nice lady and I feel that she is possibly the only person who recognised the seriousness of how Mr Man was treated back then, and the fact that my complaint wasn’t dealt with appropriately. At the time she advised me that I didn’t have to accept the outcome of the investigation if I wasn’t happy with it, and that I could pursue with my complaint if I wanted to, but I was at breaking point mentally and emotionally and unfortunately didn’t have the strength to take it further. I will write more about the occasion when I finally reach that part in “our story”, but seeing her name again brought back a lot of memories. I couldn’t help but wonder if she remembered my previous complaint, and if she would still be as supportive of me as she was back then, should I choose to take it up again, or if it was now too late to pursue a 4 ½ year old complaint.

It seems she wasn’t the only person who was sent a copy of my letter; even Mark, Mr Mans CPN, had seen a copy of it and commented to me during his last visit that it had caused “quite a stir”. In fact it would seem that very few people within the Trust haven’t seen it, despite the Complaints Manager assuring me in her letter that my “complaint and related correspondence will remain confidential.”

I was contacted by telephone by another “Acting Manager” of the CMHT as the Acting Manager that I had originally written to was away (apparently they have no real managers, just lots of people who act like managers), and she told me that she had discussed my letter with the Manager at the respite home, who also had been forwarded a copy of my letter. (So far this is four people who have responded in some way to my letter who I have not actually sent a copy of it to, including; the Complaints Manager, Mr Mans CPN, a second Acting Manager, and the Manager at the respite home, but only two responses from people who I have actually sent a copy to; the local MP and the Acting Manager of the CMHT.)

This second Acting Manager was very friendly and eager to settle the issues that had been raised, as was the Manager at the respite home, who not only agreed to Mr Man having three respite breaks a year instead of two, but also said that if I ever found myself in the same situation as I did last summer when I needed to go into hospital I should speak to her directly and she would make sure that Mr Man has a bed in the respite home and this would not be regarded as one of his three stays. In fact, she was extremely accommodating, even saying that if I ever wanted to get away for a couple of days extra I could ring the respite home on the “off chance” to see if they had any beds available for Mr Man, as they would rather the beds be occupied than to be left empty.

Obviously, I greatly appreciated these offers, but as I explained to both the Acting Manager for the CMHT and the Manager for the respite home, the point of my letter was really to highlight how the cut backs in Mental Health are affecting all patients and their carers, not simply to procure extra respite breaks for Mr Man and myself.

My conversation with the Manager at the respite home was very interesting, as she explained to me in more detail where exactly these cut backs have taken place in our area, and that the Trust prefers to refer to them as a “reconfiguration” rather than a “cut back”.

Next I received a “response” from the Chief Executive, who is actually one of the four people who I had sent a letter to, and the third to respond. I say “I” received it, but actually it was addressed to Mr Man, and I say “response” but actually it was merely an application form to become a member of the Healthcare NHS Foundation Trust with a photocopy of his signature at the bottom. So either he’s so lazy/busy/indifferent to my complaint that all he could be bothered to do is send out this “invitation”, or he thought that my letter was so extremely well written that I ought to be on the Board of Governors. I’m guessing it was the former reason, although there is a third option; maybe he presumes that I would fancy a position on the Board of Governors as I like the sound of my own voice so much, or the sight of my own typing at least.

Today I received a letter from the Chairman of the NHS Trust for our county, who I had not written to personally, but who had received a copy of my letter from the local MP. His letter has made me extremely angry, as although polite, I feel that it is very condescending and patronising, not to mention full of crap. In part he wrote:

…not unnaturally, you have been concerned by the reductions in our budget that took place last year. I must stress that [the respite home] has been wholly unaffected by those changes. My understanding is that your husband only needed to use [the respite home] twice last year and, therefore, that is why his provision was changed from three times a year to twice a year.

Which to me, translates as: “You don’t know what you’re talking about because the cut backs didn’t even affect the respite home that you use, and you obviously don’t need the breaks that badly because you didn’t even use all three breaks last year” which is insult enough, but what infuriates me even more is the fact that both statements are completely untrue and that he has copied his letter to the four people who I originally wrote to, thus undermining my letter of complaint and making me look completely stupid.

I assure you, I will be writing a very strong letter to this Chairman. I’ll have to try to resist the urge to resort to nit picking, such as the fact that he didn’t even use capital letters at the beginning of some names, and that his printer obviously needs a new ink cartridge as the header was faded. I’m wondering if I should send copies of my reply to the additional five people who have now seen my original letter, as well as the original four, or should I just request that a copy be sent to anyone and everyone who works for the Trust?

MP Response to “The Letter”

2007-03-21T14:13:00.000Z

Before sending “the letter” to our local MP I waited until I had seen Mr Mans CPN, to see who else he thought I should send a copy to. Last Thursday I posted four copies: one to our local MP; one to the Acting Manager for our local Community Mental Health Team; one to the Chief Executive of Mental Health in our area; and one to the Director of Mental Health in our area.

Today I received a reply from our local MP which read as follows:

Dear [Mr Mans Wife],

Thank you for your letter dated 15th March 2007.

I am so sorry to hear of your difficulties but thank you for bringing them to my attention.

I have written to the Secretary of State for Health, Mrs Patricia Hewitt MP and to Mr [A N Other], Chairman of [our area] NHS Trust. I will of course contact you again as soon as I receive their responses.

Yours sincerely

Well, I finally know who this “Patricia Hewitt” person is anyway…

“The” Letter

2007-03-08T03:23:00.000Z

Well, I’ve written “the” dreaded letter. I’m not sure if it really covers everything I want to say, or if it says it strongly enough, but I didn’t want to a) make my letter too lengthy, or b) make it sound like I hold him personally responsible for the cut backs (you know, I didn’t want to write “I hope you die!” or anything). So, I hope I have got the balance just right. I just want to say thank you to everyone who has commented on my blog before; you may notice that I have used a couple of points from the comments section in my letter. I haven’t sent it yet, so maybe you could give me some feedback on what you think? It’s quite difficult to try to read it from another persons point of view. Knowing me, I’m bound to change the wording a billion times before I send it anyway.

Dear [Local MP],

You have no idea how much I am struggling to write this letter. I want to write to you about the issue of cut backs in mental health services in our area, but it’s very difficult to find the words to express how I feel. However, I feel compelled to at least try, after someone recently said to me: “You might only be one voice saying what needs to be said but there are lots of people in the community that share the same problems that may not be able to speak out.”

I am a carer for my husband, [Mr Man], who suffers from Schizophrenia. This year we will be celebrating our 10th wedding anniversary. [Mr Man] first became ill around November time 1999, after just two years of marriage. He was eventually medically retired from his job of 13 years in September 2001, and spent a great deal of time in hospital during 2002 and 2003. Since then he has been prescribed various medications and he is now making good progress. Life is still very difficult for him, and the little every day things that people like you and I take for granted create an unimaginable amount of anxiety for him.

For a very long time I was unable to leave [Mr Man] alone for even the shortest amount of time due to his anxieties and self harming/suicidal tendencies. This is gradually improving, but there are still limits as to when, and how long, he can be left. As you can imagine, this has made life every difficult at times and has meant many sacrifices.

The last time we were able to take a holiday together was just over 7 years ago, in October 1999, just before [Mr Man] became ill. To ask him to accompany me on a holiday now would be out of the question. For him, the anxieties surrounding a break away from home are many and varied, and he would be incapable of engaging in the usual “holiday activities”. Just a few weeks ago he began vomiting at the thought of an evening round a friends’ house and having to mix with other people.

Personally, I feel that I really need a break away. Not from [Mr Man], but from the usual day to day routine – I’m sure most people can relate to that. My only option is to take a break without [Mr Man], but of course, I wouldn’t be able to leave him at home alone.

Over the last couple of years I have been able to get away for a night or two, maybe three at the most, for a maximum of three times a year, while [Mr Man] stays in a respite home in [a nearby town]. This has equated to maybe six nights a year in total, divided into three mini breaks. I value these breaks tremendously, so you can imagine how distraught I was to find that, due to cut backs in mental health services, we can now only use these respite facilities twice a year.

Personally, I never felt that three mini breaks a year were adequete anyway, and now we only have two. I am told that in some other areas of the country, service users are entitled to two weeks every three months. That’s four breaks a year, totalling eight weeks. I’m not complaining about the length of each break though, because I wouldn’t want to leave [Mr Man] for any longer than three nights anyway; he couldn’t cope with any longer than that. But I feel that two breaks a year are disgracefully inadequate.

Although we have been using the respite home for maybe two years now, my only “holiday” since 1999 was in 2003 for three nights, while [Mr Man] was an inpatient on a psychiatric ward. This is because I choose to use the limited time [Mr Man] has in his respite home to go to religious conventions and assemblies, which are three times a year. These are very important to me, and as an ME/CFS sufferer, I find it near impossible to travel to and from the venue in the same day, so I need to be able to stay over night in a hotel near by. This obviously leaves no respite breaks free for me to be able to actually go away and enjoy a holiday, but now there are not even enough breaks for me to go to all three assemblies either.

I realise that this is completely my own choice, but I doubt that two short breaks a year would be sufficient for any carer, particularly one who is restricted in the amount of time he/she can spend away from the home on a day to day basis. Most people in employment working an average of 40 hours a week are entitled to four weeks holiday a year. As a full time carer for 168 hours a week, it seems I am only entitled to three days, twice a year.

I have lost count of the amount of times I have had to decline invitations for holidays, weekend breaks, or even just day trips. I would dearly love to visit my family in Norway but I have had to accept that this will probably never happen, as a three night break wouldn’t be long enough anyway. This weekend I have had to decline an invitation to our friends’ engagement dinner, as it is in another town and would mean an overnight stay.

Last summer I needed to go into hospital for an operation, and there were no respite beds available for [Mr Man], forcing me to have to leave him at home alone for two nights. I was told that there were “emergency” beds available, but that [Mr Man] didn’t qualify as an emergency. However, if [Mr Man] was to become very ill while I was away, then he would qualify. Despite making as many arrangements as possible to ensure that he was not on his own for long periods, by the second night he became very ill, and this led to a relapse which lasted two months. Of course, by the time he “qualified” for an emergency bed I was home again anyway, but his relapse could have been prevented if there was a bed available for him in the first place. This is another reason why I feel that more respite facilities need to be made available, to ensure the safety of service users if carers become unavailable unexpectedly or at short notice.

I personally feel that no other group of people would be treated so poorly. In my relatively short experience of mental health services, I have seen that instead of an increase in understanding of mental health issues over time, there seems to have been a decrease of such, with service users and their families being expected more and more to struggle to cope on their own. Already limited services are being cut back, leaving “service users” with no services to use. Carers who are already pushed to breaking point struggle to find the emotional strength needed to continually fight for the rights of their loved ones, whilst the patients themselves are usually too ill to do so. I think it’s shocking that such a vulnerable group of people could be treated in this way.

This brings me back to the comment made to me which I wrote at the beginning of this letter: the fact that there are lots of people in the community who share the same problems as [Mr Man] and I, but are unable to speak out. If my letter is the only one you receive regarding this issue, please do not presume that [Mr Man] and I are the only ones affected by it.

I hope you will give my letter serious consideration, and I look forward to hearing from you in due course.

Finally

2007-03-06T18:59:00.000Z

He finally “got it”. Mr Man has been suffering from high levels of anxiety for so long and his CPN just kept telling us “It’s normal to suffer a certain amount of anxiety” and “Just keep doing it (whatever was causing the anxiety) and it will get easier”. Well, a few weeks ago we were getting ready to go to a friends’ house for dinner and Mr Man started throwing up due to his anxiety. And now Mark finally gets it. He finally understands what we mean when we tell him that what Mr Man suffers from is not a “normal” level of anxiety. He finally agreed to speak to Mr Man’s Psychiatrist about possibly changing his Diazepam to something else. Finally. But did it really have to come to this?

Generally speaking, Mark seemed much more human than usual during his last visit. I usually find it difficult to take him seriously for two reasons: one is that he looks like he ought to be a group member from The Village People; and two is that it’s difficult to take someone seriously when you feel like they haven’t got a clue. But this time, instead of handing out useless pieces of advice like colour swatches at a “blind” convention, he actually asked questions, and more importantly, he listened to and accepted what we had to say regarding Mr Mans anxiety. Finally.

After explaining how upset we were about the cutbacks at the respite home, he addressed the issue of my carers assessment and asked me: “Is this why you want a carers assessment? Are you hoping that once your needs are recognised they will be met?” I agreed that this was the case and he simply replied with “They won’t be. The services just aren’t available”. He then went on to explain how they are expecting many more thousands of pounds to be taken away from these services, and job losses too. No wonder he didn’t seem so cocky that day. “I feel a letter of complaint coming on” I said*, “Please do” he replied. I actually felt like we were on the same side for once. Finally.

Before he left, Mark still felt the need to advise Mr Man not to let his recent experience make him give up trying to go out, which Mr Man rather resented. He obviously still doesn’t appreciate how hard Mr Man tries to fight these feelings. Every week he forces himself to go out to play Table Tennis, and he physically shakes so much that even the other team members have started to comment on it. But he still goes, week after week. I’m very proud of him.

Maybe one day Mark will be too. Finally.

*This was nearly 3 weeks ago but as mentioned in my previous post I have been avoiding writing this letter until now.

Words Fail Me

2007-03-05T03:25:00.000Z

Like a lot of people I suspect, I have difficulty in coping with stress and negative emotions, so I have been suppressing my feelings in the only ways I know how: eating and watching jolly musicals. Eventually I had to ask myself: “What exactly am I suppressing?” and I had to admit: “Anger”. Anger and frustration.

It’s been five weeks now since I heard the news of the closures of three respite homes in our area, resulting in Mr Man’s respite home only being able to offer two short stays a year. For five weeks I have tried to avoid the issue. I need to write a letter of complaint, but words completely fail me.

When I had to write a letter of complaint about Mr Man’s care in hospital back in 2002, and subsequently met with the Medical Director, the whole experience completely drained me emotionally. I was left exhausted and on the verge of a nervous breakdown.

In the same year I had to fight for Mr Man’s right to claim DLA (Disability Living Allowance) because the incompetent doctor that he was under at the time was insisting that Mr Man wasn't even ill, which meant numerous phone calls, letters, a meeting with the local MP, and finally a tribunal.

Now it seems I have to fight again, but I just don’t know if I can.

Where are carers expected to find this endless supply of emotional strength, to be able to continually fight for the rights of their loved ones? Or maybe that’s the whole point: pick on a vulnerable group of people who are unable to find the strength to fight back?

Questions from readers

2007-02-10T22:25:00.000Z

I have recently been asked the following questions by an anonymous reader in the comments section:

“Why are you still married to [Mr Man]? What is it that keeps you going? Is it love, sympathy, duty… what? I am in a similar situation and I find myself harbouring thoughts of just letting go... please do share your views.”

It would be easy for me to just simply reply with: “It’s love, of course”, but I feel that the questions are deep and deserve serious and honest consideration.

I have touched on this subject previously in the post entitled “One Flesh”. I titled the post in this way because that is exactly how I feel – that as a married couple we have become one flesh. As such, whatever hurts Mr Man hurts me, and for me to consider leaving him would be like considering tearing off my limbs.

I never stopped loving the man I married, even though I didn’t know where he was anymore. As I mentioned in that previous post, I had to grieve the loss of my husband even though I was still with him, because the man I was left with didn’t resemble him at all. I had to cling to the belief that he was still in there somewhere and that somehow I would be with him again one day.

It is this belief that has kept me going, and slowly the man I love has resurfaced. I look at him now and think about what I would have missed out on if I had ended it all back then. I say “ended it all” rather than “leave him” because as I said, I never even considered leaving him as an option, but I considered ending the suffering for both of us. Although difficult to admit to, this again is something I hinted at in that previous post when I wrote: “I confess, I wanted to end the pain – for him, for me – but I have never wanted to leave him”. The only thing that held me back was that it might only have worked for one of us and that the surviving one would be left with even more heartache.

Later I reached the point where I felt that if he died maybe it would be easier for me to grieve for him and move on, rather than watch him continually suffer for the rest of his life. I would sit beside him on the edge of the bed while he slept and think about smothering him with a pillow and ending it for him, but I was worried that he would wake and not understand why I was doing it, and the thought of him believing for one second that I didn’t love him was unbearable. I am in no way recommending this as an option, but I want you to know that I understand the extent of your suffering which has lead to you “harbouring thoughts of just letting go”.

"Dark Thoughts" by Philippa King

There was a time when I couldn’t imagine ever being without Mr Man. I expect most newly married couples feel that way. I felt that without him my life would come to an end and have no meaning, and that I would never be able to move on and start a new life. I thought I would rather die than live without him. But the more suicidal Mr Man became the more my grieving took a new direction. Rather than just grieving the loss of his personality I was actually grieving the loss of his life, as I became truly convinced that he was going to die. I felt like I was married to a man with a terminal illness – I knew he was going to die I just wasn’t sure when, or that’s how I felt anyway. I found myself planning my future without him, which made me doubt my love for him and I felt incredibly guilty. This is why I thought your questions deserved honest consideration, because at one time I even wondered myself if it was love, sympathy, or duty that kept me by his side.

Obviously I have felt deep sympathy for Mr Man, watching him suffer in unimaginable ways. I have always believed, and still do, that mental illness is the worst kind of illness anyone could ever suffer from; after all, physically ill people can still be happy, but if you can’t be happy, what else is there? I can’t deny that duty must have also played a part somehow, but the main reason for staying with him was, and still is, love.

When he became less suicidal I found the adjustment quite difficult, as strange as that sounds. Although I loved him and obviously wanted to be with him, I found it difficult to believe that I wasn’t going to lose him, and to start planning a future with him rather than without him.

I am convinced that I am never going to meet anyone else like him in my life, and I don’t regret marrying him for a second. What we have been through together has in no way been easy, but we have gone through it together, and we now have a bond which is unbreakable.

Related posts: Coup de grace

Is there no end to the stupidity in this world?

2007-02-09T20:40:00.000Z

Just when I think I have heard or read the most stupid thing I am ever going to hear or read in my entire life, ever, I come across something else that is even more stupid than the last stupid thing I heard or read.

The subject of stupid people is something I usually blog about in my other blog, but this post on Mental Nurse is obviously an issue which would usually be discussed here.

Is there no end to people’s stupidity?

But maybe it works. What do I know? I’m only the wife of a Schizophrenic.

The Government Has Mr Mans Axe

2007-01-28T22:15:00.000Z

“Hope things are ok Mr Mans Wife, things are very quiet on here at the mo. Hope things are going good”
Slurry from Surrey

Slurry, thank you for your concern for our welfare due to my lack of posts recently; I really appreciate it. Sorry for not updating my blog sooner.

I hope you don’t mind but I have decided to write my reply as a post in case others have been wondering why things have been so quiet on here recently as well.

Things have been ticking along quite nicely, thank you for asking. No major upsets (until last night, which I will come to shortly), but although Mr Mans concentration has improved greatly since changing the Risperdal to Abilify, his anxiety has worsened, so as usual it’s a balancing act, getting used to coping with a different set of problems. He was a great help to me while my own symptoms were bad though, and his confidence in cooking microwave dinners is growing!

I did start writing a post to follow on from where I last left off, just after Mr Mans first hospital admission, but I kind of got “stuck”. Obviously it’s not “writers block” in the traditional sense of the word as I don’t need a great deal of imagination to simply retell real life events, but I struggle in other ways. Although I have received the compliment of having my writing described as being “eloquent” I really feel that my amateur efforts don't always do our experiences justice, and I struggle to know how to even put my own feelings into words. I also struggle to know what to include and what to leave out, and to remember the order of events. Hopefully I’ll get back to finishing that post soon though.

In the mean time I telephoned Mr Mans respite home this weekend to book him in for a couple of nights in March…

Some time last year we received a letter explaining that due to cutbacks Mr Mans respite home may be closing. I’ve been expecting to receive another letter to confirm whether this is to be the case or not, but have heard nothing. Last week I bumped into a lady in town who I know uses the same respite home, and she told me that it is to stay open, although some services have changed. I was relieved. However, when I phoned this weekend to book Mr Man a bed for a couple of nights, it was only after I specifically asked how things would change for Mr Man that I was told that each person is now only allowed to have two respite breaks a year, instead of the previous three. (This is where I start to struggle with being eloquent)

Before Mr Mans first stay at the respite home he was assessed, and it was decided that he could only stay for a maximum of three nights in a row. He didn’t often stay for the maximum stay allowed, only perhaps in the summer, and the other two breaks he would stay for one or two nights while I got away for a couple of days. As I’ve said previously, I don’t actually need a break from Mr Man, but everyone needs a break away from home and the realities of life now and again. Mr Man wouldn’t be able to cope with coming with me on a holiday, so my only choice is to leave him in respite while I get away. We’re talking about maybe six nights in a whole year, broken up into three mini breaks. Now I can only have two mini breaks a year.

The thing is though, it’s not like I even ever have an actual holiday. I use those respite breaks to be able to go to religious conventions and assemblies three times a year, which are very important to me, so I spend each day concentrating on the program, and then by evening I’m exhausted. Still, it’s a change of scenery and I wouldn’t miss a convention just to go and picnic on a British beach somewhere (and lets face it, there’s no time for me to actually leave the country and come back again), but I do wish I could have a proper holiday sometimes. This particular time in March I was planning to visit some places of interest on one day, and go to the assembly the next, and that is the closest I was going to get to a holiday for the first time since 2003.

I cancelled the two nights I had just booked, and when I put the phone down I started to cry. Mr Man feels so guilty, but I tried to explain to him that it’s not his fault; he can’t help it.

As well as the obvious disappointment I’m angry that they didn’t write to me to let me know what was happening. I asked the brainless Jim about this (that dozy bloke who is supposed to be Mr Mans care worker in the respite home), and he said to me: “Well because [Mr Man] is doing so well, we thought it best not to phone because it’s not always a good thing to remind people that they’re in need of services”.

Oh really? Well don’t worry about that mate; we still have the memory of Mr Mans two month long relapse after being left alone for two nights* to remind us that he is still in need of services. And weren’t you the one who said that Mr Mans respite breaks are for my benefit, so that I can get a break? Didn't you think I needed to know that these services were being reduced? And when exactly was the last time I had a carers assessment to see if my needs are being met? And who exactly told you that Mr Man was doing “so well”? Mark, Mr Mans CPN, the eternal optimist who thinks everything is fine as long as Mr Man hasn’t chopped his own head off, and who hasn’t actually seen Mr Man since November? How the hell would he know how Mr Man is doing? Mr Man gave up telling him how he feels months ago.

Still, he really hasn’t chopped off his own head, has he? So I suppose things really are fine. Or maybe it's just because the government has his axe at the moment.

*Due to lack of beds in the respite home, Mr Man had to stay at home on his own for two nights while I went into hospital for an operation in August.

First Hospital Admission

2007-01-05T19:00:00.000Z

Continued from "One Flesh"
May 2002

Just lately there have been quite a few news articles and posts on other blogs relating to mental health issues which have inspired me to want to write my own views on the various topics. Of course that’s all very well but it takes me away from my original purpose of writing this blog; that is to relate our own experiences in coming to terms with living with Schizophrenia and in dealing with mental health services. The logical thing for me to do would be to continue writing “our story” and in so doing I will probably make my views on the other various topics obvious in time.

In the post entitled “One Flesh” I left our story at the point where Mr Man had become so suicidal that he really needed 24 hour care, which of course I couldn’t give, and so he was admitted into the psychiatric ward in our local general hospital.

It was a Friday, and I remember that it was sunny. We had been to see his Psychiatrist that afternoon as an emergency appointment after Mr Man had admitted to me the night before that he had thought about waiting until I was asleep before attempting suicide. The Psychiatrist asked Mr Man where and how he had planned to kill himself, and he gave clear and precise answers. This was enough to show her that he was serious about his intentions, and she immediately phoned the ward and had one of the emergency beds arranged for him.

It must have been about 6 pm as we loaded Mr Mans bags into the boot of the car. This was a move we had tried to avoid for so long and yet now although there was a feeling of uncertainty I also felt that a weight had been lifted from my shoulders. I’m not sure why, maybe because I felt he would be “looked after” and I wouldn’t have to fear for his safety anymore. Maybe because I thought this would be the start of a recovery for him. That feeling of relief was short lived though; walking away from the hospital that night was one of the hardest things I’ve ever had to do.

The admission took hours, literally. There were lots of forms and paper work for the staff to fill in and lots of waiting around for doctors and such like. The staff were very friendly though and I really appreciated the fact that they showed me around the ward that would be home to my husband for a while. His bed was in a bay with 5 others and coincidentally the man in the bed next to him was Darren, mentioned earlier, who Mr Man had worked with previously. We didn’t realise this at the time though, and it wasn’t long before Darren was moved on to the Psychiatric hospital at the other end of town.

Although everyone was very friendly it was still quite nerve wracking being shown around. Everything was new to us, neither of us knew what to expect, and the whole ward was full of people - strangers. These strangers would look at us as we entered the room, and it all felt very awkward. We were shown into the lounge where some people watched TV while others played board games, including one of the nurses. It wasn’t an atmosphere that we had experienced on a hospital ward before; it was very relaxed and it was immediately apparent that everyone knew each other very well. Although they were all very accepting we felt like outsiders, unfamiliar with even the concept of a mental health community.

There was no room for privacy anywhere. Mr Man must have felt this more than I can imagine but of course at this point I didn’t know that he felt that he was being watched all of the time. It must have been very hard for him to not even have any privacy when he went to bed at night, something I expect most of us take for granted. But of course privacy was the one thing he couldn’t afford to be given; privacy was dangerous for him.

It was late by the time I left the ward that night. As I looked back through the little window on the locked ward door I could see Mr Man sitting on the edge of his bed; his hands in his lap, looking down towards the floor, looking abandoned and lonely. I wanted to take him back home with me again. I wanted to hold him and protect him and make him feel safe and loved, instead I felt guilty of making him feel vulnerable and abandoned. It was a dreadful feeling. It was so hard to let go and trust others to keep him safe and yet I knew I couldn’t do it myself anymore. I drove home alone that night and went into the dark empty house. It was so quiet. I went straight to bed, alone, thinking of how alone Mr Man would also be feeling.

"First Admission" by Philippa King

For so long I had been used to barely leaving the house for fear of Mr Man harming himself without me there to protect him. Now suddenly there was nothing to stay home for. The house was so empty and quiet. It wasn’t a home anymore, only a house. I couldn’t bear to be there so each day I would get up and go out and stay out for as long as I could. I would do anything: window shop, visit friends or family, or just drink coffee on my own in a café. Most times I stayed out all day until it was time to go to bed. The rest of the house was hardly used and most of the time I ate out or bought ready made sandwiches to eat in the car on the way to the hospital. There were times when I felt that I really needed to be alone and yet the house was just too lonely. I suppose I didn’t really want to be alone, I just got tired of talking about the situation all the time with other people. I know people cared about Mr Mans progress, how I felt, and how I was coping, but I didn’t want to keep talking about it all the time. I wanted to talk about “normal” things. I needed a break from the reality of the situation. That sounds really selfish now; after all, what break was there for Mr Man? But these were the times when I would buy myself a microwave meal on the way home from the hospital and pick up a DVD from the video shop and just “switch off” for the evening. These times were the longest periods I spent in the house, but I spent them “somewhere else”, not wanting to think about the fact that I was alone, or why.

After 3 hospital admissions I can now say from experience that the first 3 weeks after admission and the first 3 weeks after discharge are always the worst - yes, even after discharge. Each time there is a complete change in routine and that can be so hard to get used to.

Back at the hospital Mr Man was having to get used to a new routine of his own. Whereas I was having to get used to being alone, Mr Man was having to get used to the constant company of strangers, which in itself brings a different kind of loneliness. He was used to me always being there for him, but now I could only visit for a few hours in the evening*. There were activities on the ward each day organised by the Occupational Therapists and he was encouraged to take part. This was a big change to hiding away in bed for 18 hours a day. I think most of the activities seemed tedious to him but he played along thinking that he would get into trouble for not trying to help himself if he didn’t. Also he thought that by doing as he was told he could be discharged sooner. The meals were good and he got to choose what he wanted from a menu the day before.

The ward was a mixed sex ward and the patients were quite varied – different ages, different races, different psychiatric problems – but they all had one thing in common: they all seemed to feel secure in the knowledge that everyone around them was just like them – broken in some way – and no one would judge them. There was a strong feeling of community and understanding between the patients, and the staff interacted very well with them. Often it was hard to tell who was the patient and who was the nurse as the nurses didn’t wear a uniform and there didn’t seem to be any air of superiority from them. They would sit and play board games with the patients, or chat and laugh with them.

There were a few patients who seemed “strange” but mostly they were all very “normal” and friendly – perhaps not what people would expect to find on a Psychiatric ward. Actually, I’m not sure what people expect to find on a Psychiatric ward. Most patients suffer some kind of depressive illness, and yet the atmosphere wasn’t depressing. People played CD’s, chatted, played pool and watched TV. The ones who obviously needed some time alone were left to be alone, and yet would occasionally receive an “are you ok mate?” from another patient. Together they seemed to have a strong community, but individually they were all suffering inside.

*Visiting times were different to the other wards in the hospital. There was a short visiting period at lunch time, and then from 6 pm – 10 pm in the evening.

Next: "The First Three Weeks"

The Ghost of Christmas Past

2006-12-23T23:17:00.000Z

Christmas is a lonely time for many people. Unlike any other time of the year the world seems to stop spinning and everything comes to a halt. In this country at least, this includes mental health services. This is just too much to cope with for some people; just knowing that no one is there for them if they need someone can cause an increase in anxiety. (See this news article)

Traditionally, it is a time for family and friends to come together. But some people don’t have any family. Many will be remembering lost loved ones. Elderly ones in particular may have lost their friends. Sick ones may struggle to form lasting friendships. For them, knowing that others are enjoying the company of people they love and who love them can make them feel more isolated than ever.

For some people, going to the shops each day provides the human contact that everyone needs. But the shops are closed. I know mental health patients who wander around town all day, preferring the company of strangers than no company at all. How will it be for those ones when the town centre is completely deserted? When there is no one on that bench to chat to; no playing children to laugh at; no struggling mothers to joke with?

Tomorrow people may be writing a list of all their final arrangements, or their last minute shopping needs. Why not write a list of people who you know live alone? Maybe they’re elderly ones; maybe they have an illness of one kind or another. Maybe give them a ring just to show that they’re not forgotten. Maybe pop round for a cuppa and take them a slice of cake. At the very least you may just make someones day. Or you could even save a life. Maybe.

Other Schizophrenia Blogs

2006-12-10T17:32:00.000Z

Through being a member of Technorati I have realised that there are new posts on “Up the Down Escalator”, which is a blog written by a man whose wife suffers from Schizophrenia. Unfortunately there seems to be a problem viewing his blog at the moment and a completely unrelated page displays instead. Being a confirmed technophobe I have no idea what the problem is and can only hope that it is rectified soon as his blog makes interesting reading.

Also due to being a member on Technorati I realised that the author of “A Schizophrenic Dad” had kindly linked to me. It is written by a woman whose Father is a sufferer of Schizophrenia, and she details some frightening experiences that she and her family have gone through.

Through her blog I also found the blog “A Sibling of a Schizophrenic” written by a woman whose brother suffers from Schizo-affective-disorder which she describes as a combination of Schizophrenia and Bi-Polar disorder. Although she has been blogging since February 2005 there aren’t many posts to be honest, but I found her first post in particular very moving.

Today I became a member of Bloglines and from there I found the blog "Schizophrenia - A Carers Journal". This is a blog written by a man whose son has been diagnosed with Schizophrenia. I have not yet read through all of the archives, but from what I have read it sounds like they too have struggled with mental health services.

Links to these blogs can be found in the side bar to the right.

Edit: I have found a way to read the updates on "Up the Down Escalator". Once I had joined Bloglines I was able to add the web address - http://downescalator.blogspot.com - to my "feeds". Then I was able to click the link in my feeds list and view the full posts on the Bloglines website - after scrolling down past the unrelated post about folic acid. I hope this helps anyone who wanted to read it.

Related blog posts: Blogroll Update

Other therapeutic interventions

2006-12-06T02:24:00.001Z

Tonight I am writing this as I accompany Mr Man at a table tennis match, which is one of his many “therapies” that he engages in. This is one that helps him to interact with other people in a setting where the focus is on a sport which he loves rather than on the actual interaction with others, which helps to ease the pressure in that area. He has found this particular activity very difficult in the past and still does sometimes, but looking back it’s clear to see that there is vast improvement.

We refer to last season (Sep ‘05 – April ‘06) as Mr Mans first season back in the game, but actually his first season back was the year before (Sep ‘04 – April ‘05). He had been discharged from hospital 9 months earlier and felt that the time was right to get back into the game after about a 7 year break. He didn’t cope very well though and a bad back saved him from the embarrassment of having to admit the real reason for dropping out very early in the season. Still, I was proud of him for trying; he knew it was going to be difficult but at least he still gave it a go. Dropping out in no way meant that he had failed; he just wasn't quite ready yet, but he was already planning to try again at the start of the next season.

I think the determining factor in the success of this “therapy” is the fact that it was completely his own decision to play, and then not to play. With any type of “therapy” that is considered a person with Schizophrenia has to be willing to give it a try otherwise the results will be counter productive for two reasons: Firstly, a person with Schizophrenia shouldn’t really be forced to do anything against their will that will take them beyond their comfort zone and that they might not cope with, as this may cause a relapse of symptoms, and there’s a fine line between being encouraging and being pushy. Obviously this means there is a need for trust between the Schizophrenia sufferer and the "carer", and knowledge of how much the person can cope with. I’m sure some people with Schizophrenia would have the tendency to play on their anxieties as a way of getting out of doing something they don’t want to do, but I don’t find this to be the case with Mr Man, and I know him well enough to know when to push and when not to.

The second reason is that obviously for any person, not just people with Schizophrenia, their attitude towards the therapy will directly affect whether they benefit from it or not. An activity will not help the person if they are unwilling or unable to enjoy the experience and thus benefit from its therapeutic properties. That’s fair enough; we all have our own ideas of what could be enjoyable or not, and what will benefit us or not, that’s what makes us all individuals.

Sometimes I think the approach used by health care professionals is wrong. When Mr Man was discharged from hospital in November 2002 after his first admission, he began Art Therapy. This involved him having to draw something – anything – of his choice while a Psychologist sat and analysed his behaviour and mannerisms whilst he drew. This didn’t work for Mr Man for several reasons: It’s not exactly a relaxed setting, or even a natural setting, for someone to engage in something creative; the setting itself inhibits creativity. Also I wouldn’t have said that Mr Man was really the ideal candidate for such a therapy; he didn’t believe he was ill or in need of therapy for a start, and he felt that this kind of thing was for people who had “issues” which he didn’t have. Forcing him to engage in this form of therapy merely reinforced the belief that he was being observed all the time. Encouraging a patient to engage in arts within a group so that they are not singled out would be much more beneficial. The setting would be more relaxed and the patient doesn’t need to know that he or she is being observed. This is how Art Therapy is conducted on the ward, although I suspect that it is used mainly to give the patients something to do. I’m not knocking it; Mr Man seemed to enjoy it while he was on the ward and if patients are finding a measure of joy then that has to be a good thing.

Of course at the time of the referral Mr Man was still in hospital and under the care of a Psychiatrist whose abilities and even his motives were somewhat questionable to say the least. He refused to accept that Mr Man was suffering from Psychosis and seemed determined to prove that it was either all an act (which begs the question why he kept Mr Man on the ward for nearly 6 months) or that his problems were due to his upbringing and his “unnatural” attachment to his mother, his sister, and even me his wife. More likely is that the Psychiatric Consultant in question was out of his depth, and out of a job, as his contract finished just a week before Mr Man was discharged. One nurse on the ward openly admitted to me that he felt the Psychiatrist had lost interest and didn’t care about the patients as he knew he would be leaving soon. Anyway, I digress, but it would be interesting to know if Mr Man would still have been referred to see a Psychologist for Art Therapy if he had been under the care of someone who knew or even cared about what he/she was doing. Mr Man only attended about 3 sessions with the Psychologist and then just refused to go to anymore, but no one has ever mentioned it to him as if the whole event was inconsequential.

Last season (Sep ’05 – April ’06) was the first “proper” season back for Mr Man where he played for the whole season. I remember accompanying him to games at the start of the season and he would physically shake and sweat all over. How he won a single game in that state I’ll never know. The next day he would begin to feel anxious over the following weeks match, and this is how he went on, week after week. Still, he didn’t give up and I admire his courage. As his Community Psychiatric Nurse has said (and I do agree with him sometimes) there is more achievement in the fact that he continued to play despite his anxieties and symptoms. Before his break away from the game he used to play in the Premier division, but although he played in division 3 last season (the lowest division in this area) I can’t express how proud I felt as I watched him collect his trophies at the end of the season. They represented so much more than simply outplaying his opponents, and there is no question that he worked hard for them and definitely deserved them.

He had some setbacks this last summer, and of course being away from the game from April to September during the season break means starting again in lots of ways, but this season he is coping much better already. He paces the floor at home for about half an hour before we leave, but I suspect this might actually have more to do with the journey as I have mentioned before. Obviously he still has his good and bad days though. Some weeks he finds it very hard to concentrate on the game due to the voices being so intrusive, and he finds it hard to interact with other players. He speaks when he’s spoken to but he has a very intense look about him and seems oblivious to what is really going on around him and just goes through the motions. One week he accidentally hit the opposing player with the ball several times, but because he was so distracted by the voices he hadn’t even noticed and he didn’t apologise. He hasn’t told anyone in his club what his problems are so it must have seemed very rude to some, but of course I knew that it was because he wasn’t really “there”. It was quite embarrassing and when he came over to his seat I had to quietly remind him to say sorry when he hits people with the ball!

Tonight he coped fantastically well, interacting with other players from several teams. I noticed that he approached people himself to initiate conversation, and he had a laugh with some players. He seemed relaxed and he played very well. As I type these notes up he is sleeping on the sofa, exhausted from the evenings events.

By the way, he won all of his games.

On a lighter note...

2006-11-22T16:30:00.000Z

Whilst searching for Schizophrenia related blogs, I came across this: Could Schizophrenia “protect” against blindness?

The first thing that popped into my brain was “Are you recommending becoming Schizophrenic to avoid becoming blind?”

Apparently the person who raised this question has read an article (which I haven’t read) that suggests that blindness could “protect” against Schizophrenia, and wondered if the opposite could also be true. I have visions of psychiatrists everywhere reading this article and then poking their patients in the eye as a cure.

The debate continued with theories about cat owners developing Schizophrenia and whether less blind people are Schizophrenic because they own guide dogs instead.

Mr Mans response was “Some people have way too much time on their hands”.

Patient rights verses patient safety

2006-11-19T02:51:00.000Z

June - October 2002

On Thursday I came across this news item which highlights a problem that unfortunately Mr Man and I are all too familiar with.

It is unclear whether the patient in this article discharged himself from the secure unit at the hospital*, was given home leave, or whether he escaped after being given permission to walk around the hospital grounds, as several articles (all from the same news website) differ slightly in details, but whatever the case, one thing is clear: he had not been assessed adequately to determine whether he was a risk to himself or others.

Once again I am moving into an area that I wasn’t planning on blogging about yet, but during Mr Mans first hospital admission this was just one of the ongoing problems that we had. Again and again Mr Man was released into my care for home leave, placing me under unimaginable pressure for days at a time, as he was very suicidal, but also he suffered from command hallucinations telling him to kill others. The problem was partly that the consultant and some of the nursing staff simply refused to accept that Mr Man was even suffering from psychosis, despite an assessment proving otherwise**, but also, just as the news article explains regarding the patient John Barrett:

"…too much emphasis was placed on [the patients] wishes and he was not assessed adequately."

In Mr Mans case, he wanted to go home as often as possible since he didn’t believe that he was ill, as is common with all Schizophrenia sufferers, but also, due to his psychosis he believed that the staff were working for “the company” and trying to control him with the use of medication. Due to these feelings he was understandably very keen to go home each time the consultant or other staff members suggested home leave, but that doesn’t mean that he was well enough to. Often he asked for home leave himself, and the staff never refused as it was thought to be a “good sign” that he wanted to go home. It was very difficult for me to say no, as I was always asked in front of Mr Man, and of course I had to be careful that I didn’t end up looking like the “baddy” who was forcing him to stay in the hospital against his will, and thus lead him to believe that I too was working for “the company”.

Although he had been through an assessment to determine whether he was truly psychotic, to my knowledge he still hadn’t been through a risk assessment at this point, despite being admitted due to feeling suicidal. He had already been in hospital for nearly four months before a risk assessment was finally carried out on him after he had cut his arm with a razor blade within the hospital grounds, and he was found to be a high suicide risk***. These results were largely ignored much like the results of the other assessment, particularly by the consultant on the ward. Just one week after being assessed as a high suicide risk the consultant said Mr Man could go home for some leave. Thankfully his primary nurse, who had conducted the assessment, ignored the consultant and only allowed Mr Man home leave for a few hours. Two weeks later Mr Man made a serious suicide attempt whilst on the ward.

From these experiences it is easy to see why some psychiatric patients who are released from hospital go on to commit serious crimes, or commit suicide. Often patients are not adequately assessed, and even when they are a number of problems can arise:

There is a lack of communication between staff members (including consultants) about the level of risk.
Staff members (including consultants) do not update themselves by reading patient notes.
The responsibility is wrongly placed on the shoulders of an unqualified carer.
Staff members (including consultants) disagree on diagnosis or treatment including whether home leave is beneficial or not.
For a completely unknown reason to myself, risks are ignored by staff members (including consultants).

One factor that staff members fail to take into consideration is that whilst a patient may not be a serious risk to others or themselves whilst on the ward, the level of risk drastically increases once the patient leaves the hospital. This is largely due to the fact that the patient now has access to things previously not available to them whilst on the ward, such as knives, medication, alcohol, rope, and even privacy. This is one reason why the role of the carer is substantially more difficult than the role of the staff member, not to mention the fact that staff members work in shifts, whereas the carers role is an impossible 24 hours a day.

It was mentioned in one of the articles that the staff failed to heed the warnings of Johns partner. This is another problem that we faced often. In the days leading up to when Mr Man attempted suicide on the ward I had desperately tried to get someone to take my concerns seriously about his safety. Unfortunately no one did. This is something I will write about in more detail another time, but as Mr Mans current consultant has said recently “It’s a mistake not to listen to the carer”.

* One article states that John, the patient, could not be held at the hospital against his will, which is completely untrue. An “informal” patient, or someone who is in hospital voluntarily, can be detained for up to 6 hours by an authorised psychiatric nurse, whilst waiting for the doctor in charge to make an application to detain the patient for 72 hours under section 5 of the Mental Health Act 1983. Before the 72 hours has elapsed the doctor can then arrange for the patient to be held for a further 28 days under section 2, or 6 months under section 3.

** At the time it was explained to me that the assessments were “scored” out of 4; 1 being the lowest and 4 being the highest. In the psychosis assessment Mr Man “scored” 4, showing that he was suffering from a very high level of psychosis.

***In the risk assessment Mr Man “scored” 3, showing that he was a high suicide risk. The nurse who conducted the assessment explained that the only detail which prevented Mr Man from “scoring” 4 in the risk assessment was that he hadn’t decided on a location yet.