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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