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

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"

Updates

Some of this post has been deleted

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

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

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

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

"The Darkness Rolling In" by Philippa King

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

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

Questions From Readers

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

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

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

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

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

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

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

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

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

"Trust Me" by Philippa King

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

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

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

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

Violence and Schizophrenia – Comments from Readers

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

"On Balance" by Philippa King

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

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

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

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

Even a small percentage is significant”

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

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

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

Related Posts: Violence and Schizophrenia - Part One, Violence and Schizophrenia - Part two

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

The Ghost of Christmas Past

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

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

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

"The Silent Night" by Philippa King

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

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

Violence and Schizophrenia – Part Two

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

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

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

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

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

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

"True Figures" by Philippa King

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

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

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

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

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

Violence and Schizophrenia – Part One

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

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

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

"Intrusive Thoughts" by Philippa King

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

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

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

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

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

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

The Perfect Gift

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




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

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

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


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

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

The Truth Revealed

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

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

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

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

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

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

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

It was then that he told me.

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

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

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

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

"There Are Cameras Everywhere" by Philippa King

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

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

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

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

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

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

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

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

I knew I had to ask him.

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

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

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

"Thought Theft" by Philippa King

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


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

Next post: Dark Days

Respite

Dictionary definitions of the word Respite:

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

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


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

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

"Respite" by Philippa King

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

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

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

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

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

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

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

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

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



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

Progression or Regression? Part Two

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

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

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

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

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

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

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

"She Shouts" by Philippa King

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

Progression or Regression?

Sometimes I just can’t tell.

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

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

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

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

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

"The Threshold" by Philippa King

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

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

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

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

News Flash!

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

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

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

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

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

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

Thank you Philippa.


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

"Behind a Glass Wall" by Philippa King

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

Genius or Madness? The Connection between Psychosis and Creativity

Part Three – To Treat or Not To Treat

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

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

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

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

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

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

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

Hearing voices is often a traumatic experience for the sufferer

"The Words of my Voices" by Philippa King

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

Finally...

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

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

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

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

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

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

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

You decide.



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


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

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

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



*The Causes of Schizophrenia

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

Genius or Madness? The Connection between Psychosis and Creativity

Part Two – Just Where Do You Come From?

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

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

Hallucination or Vision?

"The Vision of Time" by Doctor Goober Modesty

Where does this creativity really come from?

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

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

"Medication" by Philippa King

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

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

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

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

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

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

Next: Part Three

The First Three Weeks

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

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

"Not as it Seems"

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

by Philippa King

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

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

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

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

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

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

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

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

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

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



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

**Electroconvulsive Therapy.

Next: "The Truth Revealed"