Oh Crap

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

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

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?

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

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

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

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...

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

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

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

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

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...

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

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

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

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

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

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

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

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.





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