'schizophrenia'

- a carer's journal

Sometimes my severe fatigue attacks can be mostly over in twenty four hours with occasionally continuing milder fatigue for a few days. For the last eighteen months or so I've got used to feeling fairly well as long as I am cautious.

So it is worrying that this fatigue is lingering. I'd been feeling steadily better as the week went on but this morning I just couldn't drag myself out of bed. I got up twice and went straight back again. I just ached so much and was tired. I kept falling back asleep even though I had slept for nine hours.

We went to see Sam this afternoon and even the walk from the car park to the ward seemed too hard in the biting cold wind.

I feel if I am moaning about so very little really. It just feels like a mild virus infection - you know that tingling and aching feeling with fatigue. It's just that I've spent years feeling like that for much of the time and I'd hoped I was getting better now. I suppose the thought of it is depressing me ... but it is probably caused by depression in the first place so it is important not to get into a downward spiral.

So enough of me moaning. At least I'm not locked up on a secure ward accompanied by others with severe psychiatric problems believing I am detained unjustly and getting more and more deeply depressed and angry as Sam was when we saw him today.

There was a planning meeting for Sam today - but last night I started to feel very rough. I don't know if it is my ME/Chronic Fatigue symptoms or just a virus. They are so difficult to distinguish.

Anyway this morning I wasn't fit to get out of bed so Jane went alone. Several people hadn't turned up, Sam was angry at being described as having schizophrenia and the doctor is still thinking of putting Sam onto Clozaryl - so it didn't seem to take things any further.

Just another meeting to tick the box really.

We had to wait to see Sam on Saturday. Two staff had taken out another patient. They were a little late back. That was no problem. We went in with them and chatted with the patient.

He is a bit of a live wire and has chatted to us on the corridor on the ward before. We had a laugh with him on the way in.

Sam looked to have just had a shower as he had wet hair. He was wearing pyjama bottoms again. He has been often when we have visited recently. It has surprised me as until recently Sam had never possessed a pair of pyjamas. Not since he was a child I guess.

Soon after he was admitted to the ward I was asked to take him some more clothes in ... most of his seemed to have disappeared on the transfer from the previous ward. So I bought him a selection and on a whim bought him some pyjama bottoms and a tee shirt top that I thought he might like. It seemed to be casual wear that he might enjoy on the ward. It seems he is enjoying them far too much - they can't get him out of them!

We ended up in the room - Sam in an armchair. Myself and Jane on a settee and two nurses - one by the door and another between Sam and us. The nurses sat there, bored, not wanting to be there themselves. Silent and deadening the whole atmosphere. We all sat there - with us and Sam making small talk trying to lift the atmosphere. Eventually it was time for a cigarette so Sam went out. When he came back he sat next to us, politely suggesting one of the nurses moved. He became chatty and alive. We ignored the bored nurses and had a pleasant conversation.

Sam was fine throughout. We don't need two nurses in there with us.

We had another family session earlier this week with Sam's psychologist - and the one from the ward. The care co-ordinator and named nurse were off so couldn't be there.

The ward psychologist was keen for there to be another member of staff from the ward there. Sam had dived through the hatchway into the kitchen a few days ago and they are worried about his unpredictability. After some negotiation it was agreed t have two further members of nursing staff outside the door. There are windows to see in.

But Sam was great. He concentrated for an hour and a half. We discussed some difficult issues and Sam was rational and clearly addressing some difficult areas.

Whilst in many ways his mind is all over the place it shows that when he wants to and needs to he can concentrate and be rational.

About eight o'clock on Saturday morning we had a phone call from Sam. He'd run out of tobacco. We were booked to see him that afternoon - could we come this morning instead?

No Sam ... this afternoon.

When we got there a very nice nurse asked to chat with us first. Sam had been awake all night. That morning she'd done an assessment related to violence on a six point scale and he had scored two. She was a bit concerned about him so there would be two members of staff in with us. At least this time it had been explained why that was the case. She suggested that we perhaps didn't stay for too long. We of course agreed - when Sam was feeling aggressive or confrontational we too felt short visits were better.

But Sam was fine. He looked pale and tired but he was friendly, polite and calm. He was sociable - asking us if we would like a cup of tea - suggesting to the staff we just chat together while he went for a cigarette. He said to them that we were nice and they would get on with us! The only person he was the slightest bit rude to was one of the nurses. We decided to leave soon afterwards happy that the meeting had gone well - and the nurse went to chat with Sam to try to resolve his issue with her.

A little earlier in the week I had a call from the ward. They were a little embarrassed. Would it be possible for me to get Sam a CD player?

Of course.

It seems that having mislaid his portable one he had taken the ward CD player from the shared area. It was clearly important to him so they had not demanded it back - but meanwhile nobody could play music in the shared area. I was amazed at how thoughtful they were being.

I recollected that two (or was it three) hospitals ago Sam had his hi-fi unit put into storage. I hadn't heard of it since. So I rand the hospital. They said they'd look into it. Later in the day having heard nothing I rang again and spoke to someone I knew. He'd definitely look into it. Of course I've heard nothing back from them. So in the meantime I've bought Sam a cheap CD player from the supermarket until we can get the hi-fi sorted out.

I went to the ward round meeting yesterday. They had just started with someone else so I had to wait for half an hour. Sam had just been woken and after a cigarette came through to wait with me.

On Saturday when Jane and I had visited two members of staff sat in with us rather than just one and the same happened again yesterday. It is very difficult having a friendly chat when you have two minders sat in the room however friendly they may be.

It seems they have been reducing Sam's depot medication - which is good ... but of course they have reduced it by too much too quickly. Changes in medication always have a severe effect on Sam. He has been threatening violence more often and has slapped a nurse. They are very matter of fact about it though - he is ill ... so it has to be managed sensitively. He has not yet been pinned down and sedated as happened on the last ward routinely almost as a punishment.

They want to try Clozaryl again though. Having reduced the medication and Sam being worse they seem to be some distance from the idea of getting him off his medication.

The trouble is that Clozaryl has potentially fatal side effects. He was on it for a couple of months about five years ago. He had an amber warning from the blood test and suspected myocarditis. However the records from then seem to be either incomplete or missing. As there is no evidence he actually had myorcarditis they want to try again under careful supervision.

We are very worried about this but understand the reason they want to try.

I think though that we have lost all hope in there ever being a medical solution.

Late last night Jane had a call from Sam. He was angry and talking of suicide. Then she heard staff trying to reason with Sam - then crashing as Sam knocked something to the floor.

It turned out he had forced his way into the office to use the phone.

Jane tried to phone back a little later when she thought there had been time for things to settle but there was no reply.

Later still she got a call from the ward. Sam had been taken to a quiet room and held gently just so he wouldn't hurt himself. There was no "pinning down" and injecting as had happened so often on the previous ward. There was no judgementalism over him and what he had done. He is ill and they want to help him. The nurse spoke kindly to Jane recognising that she too would be distressed. They seem to have handled a difficult situation well with some skill.

This morning Jane spoke with the ward manager who again spoke sensibly and kindly and I have been invited to the ward round meeting tomorrow.