...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.
Tuesday, June 30, 2009
...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.
Wednesday, June 10, 2009
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.
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.
Sunday, May 24, 2009
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.
Wednesday, May 06, 2009
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.
Tuesday, April 21, 2009
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.
Labels: Present day
Monday, April 13, 2009
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.
Labels: On a Lighter Note...
Saturday, April 11, 2009
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
Saturday, March 07, 2009
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.
Friday, February 20, 2009
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.
Friday, February 13, 2009
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.
Friday, February 06, 2009
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.
Saturday, January 24, 2009
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.
Labels: News items