Wednesday, November 25, 2009

I'd been worried for a while that I was going to become more ill again. It must be over eight years since I had my breakdown. It was a struggle for a few years but recently I have been fine most of the time as long as I don't over-exert myself physically or emotionally - and one can affect the other.

But I'd had a premonition of sorts. Perhaps it was just me feeling a bit flat about Sam. It's been going on for so long and progress sometimes seems non-existent. We continually seem to have to fight the same battles over and again. One wants to run away from it all sometimes and I can remember feeling like that before I first became ill.

So when last week I had another attack of my fatigue symptoms I feared that I was going to become seriously ill again. I sometimes have a twenty four hour attack which just leaves me a bit tired but on this occasion it was lasting over into the second day. There can be self fulfilling prophesy about this that the worry and depression in the fear that it was going to be bad contributes to the symptoms and makes it worse. But I have managed to keep going. I've had some busy days and managed to cope. A few times I have been totally drained and exhausted but have managed to bounce back. It is why I am not diagnosed with Chronic Fatigue Syndrome - it seems with that to have that you are not allowed to bounce back!

But I have been left tired and with aching limbs and pains in my back and emotionally fragile. So there was no way I could have gone to the ward round with Jane yesterday. I was in tears and anger just going through her recounting of it. If I had been there I might have raged against them. That might have done me some short-term good but would not have done our cause of helping Sam any good.

So I am trying to get back into pacing myself again. I need to feel strong if I am to be there for Sam.

Tuesday, November 24, 2009

We've been talking about Christmas recently ... well despite our determination to start early this year we still haven't got any presents. But this isn't about presents. It's about Sam.

Sam has missed the last two Christmases at home. He had not been able to leave the ward. That is despite the year before last so much effort on our part to make it happen. So as Sam has been coming home recently we thought it might be worth starting some conversations with the ward about this ... and there are other issues. The violence on the ward is making Sam more poorly but he is also enjoying his time off the ward so much and responds well to it.

So Jane went to the ward round meeting today. All the psychiatrist was interested in was the fact there was a low level of Clozapine in his blood. Perhaps Sam was hiding some of his medication. This must be the reason for his current "elation" - which disappears when he has been off the ward for a while. However the doctor couldn't accept an environmental cause for his distress - it must be all down to the medication. Why do these doctors have such a one-track mind?

But Christmas? Yes. We are hopeful. They will be doing the rotas soon and we hope Sam will be home some time around Christmas.

Friday, November 20, 2009

Sam's been home on leave accompanied by a member of staff a few times recently - last weekend and yesterday. Also he asked his psychologist when he was meeting Sam earlier this week if they could come home together. Sam has decided he wanted to discontinue the family meetings on the ward. I wondered if wanting to come home with his psychologist was an attempt to set them in a different context, more relaxed and under his control.

Each time he has come home recently though he has started off very excitable, somewhat confused and unpredictable. But once home he has settled. His more difficult behaviour seems to be response to the ward - its aggression and violence, its expectation of madness. After a little while at home he seems to settle, become calm and reasonable - and more happy in himself.

He has talked lots on the phone and on visits home of being assaulted by other patients - the odd thump or kick. In the past he has been assaulted on other wards four times seriously enough to have to be taken to hospital. A couple of weeks ago another patient was assaulted seriously enough to have to be kept in hospital overnight. So these relatively minor assaults must be frightening and bring back previous traumas.

He is not currently a danger to others and should be on a ward with less violent patients. His present situation stops any possibility of him getting well.

Thursday, November 12, 2009

A review has been published today in the UK on the use of anti-psychotic medication with patients suffering from dementia. Such medication is prescribed to 180000 such people each year. The report suggests that it is of no use to 150000 of them, has unacceptable side effects and may even be killing 1800 people.

You can read a news item about it here.

I have just written this comment on a BBC news blog:
"If it is unacceptable to give these dangerous, mind altering drugs with dangerous and potentially fatal side effects to elderly people it is also unacceptable to give them to young people diagnosed with 'schizophrenia'.

The withdrawal symptoms experienced when people stop taking anti-psychotics suddenly is like an extreme psychosis and has resulted in many tragedies.

Most of the positive research on the use of anti-psychotics is funded by the drug companies that are making a huge amount of money from selling them to the NHS. There is woefully little funding available to assess and trial non-medical approaches.

It is time that the use of this expensive and potentially dangerous medication of dubious benefit is reviewed for ALL patients.

Sam has been prescribed about ten different anti-psychotics over the last ten years - sometimes more than one at a time. Their positive effects have only ever been short lived. He has had many side effects including lethargy, aching limbs, slurred speech, agitation and weight gain. Recently he put on over 60 pounds in weight in a few weeks when he was prescribed a new anti-psychotic. He was once rushed to hospital with a suspected severe heart complaint associated with his medication. Yet he is still psychotic.

Tuesday, November 03, 2009

"Am I going to be in a psychiatric ward forever?"

Sam has often asked such things. It may be a sign of him getting better. Planning for the future.

"No Sam. Of course not." And I started talking of possible futures.

More perhaps to persuade myself than him.

Monday, November 02, 2009

We were sitting outside in the unseasonably warm wather. He had become calm and almost content.

"I woke this morning and thought of you and mum. I understood that your love was not going to run out. It made the day good."

Sunday, November 01, 2009

Sam came home again yesterday with a nurse. He seemed very giddy at first. Laughing and giggling inaropriately, taking incoherently of strange things. He was in reasonable humour but he did not seem as well as I had hoped. He had been kicked that morning by another patient. His leg was bleeding. A patient had stood at Sam's door threatening him. Another shouts at the ward as the demons in his mnd.

It is no surprise Sam is in a state when he has to cope with this.

When we got home Sam sat outside smoking a cigarette. The last day in October yet it was so warm. Sam was loving just enjoying peace and quiet and calm. We went for a walk up a local hill and enjoyed the long view and the beautiful cloud formations. At home Sam enjoyed a new CD that Jane had bought for me recently - covers of John Lennon songs published by Amnesty Inernational in aid of Darfur. Another cigaree, another rest of the sofa listening to the music and th time to go ... relaxed ow and in a much better state of mind.

If it is the ward itself that is making him ill then surely somewhere different should be found?

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