Across the miles

Hopefully I'll soon be able to things'll soon be sorted out and I'll be able to make the journey home. Must say it's possible that I didn't do too well on my journey to and from Brum. It's difficult to tell with everything that's going on.

It takes around six weeks for a medication change to have a really noticeable effect with this illness. It was reading that which made me hope that things would improve rapidly within six weeks of starting on the steroids after first going into hospital. But ofcourse there has been so much repair work for my body to do and there have been changes in the medication as the optimum dose is sorted out.

Still I have me computers and they're very good for staying in touch one way or another across the miles.

Going to take my medication now and turn in. I was up very late last night because of the illness. It can be very time consuming. Woke up late too though but I'm sleepy so I hope I'll just go to sleep

Docteurs

Two of me young friends have decided they would like to be doctors. One thinking that he'd like to be a member of .... BAD .... the British Association of Dermatologists after getting to know about my illness. I'm taking photos of the way my illness is presenting itself for them and writing up about the treatment. All my medication and my symptoms and how I'm feeling and dealing with the illness. It's all been posted more or less up to date. Guess it's good for them to be able to have as it's quite a rare illness.

There were medical people in my family so I'm not too far removed from all this. It's not something that I'd've wanted to do myself.

Meditation and exercising.

And I will start meditating properly and things like that again soon. People've been speaking to me about it and I know they're right.

I'm doing a few of the exercises I used to do with mum. I obviously can't do all that much at the moment but I can work out which exercises should help and try to do some. I mean they're very gentle. I'd never have thought, so soon after helping her with them, that I'd be doing them myself. I'm very glad that I know them.

And I've been doing breathing exercises to help me get through some of the pain. I bought a pack of cards from the health shop here and found that some of the exercises were the same as those the rehab hospital had taught mum. I went back and bought another couple of packs to give away as presents. I also have some exercise sheets that were devised by Charing Cross hospital for people with Parkinson's Disease that should help me as well. Looking after mum has taught me a lot that now is helping me with my own illness.

I said that I wished that I had the skills that the people who worked in the home she went in to eventually had. As she got progressively sicker the kind of care she needed changed and I was amazed watching some of the care she was given. I guess I'm learning some of it by having to look after myself through this illness now. Obviously some of what I have to do takes quite a bit of skill and care and has to be very gentle too. It's very different from the kind of care mum was given but it's still learning to do the same sort of thing.

I'm glad that I learnt to massage too. I think it was one of the highlights of mum's days and I know it helped to relieve the pain a little for her. Now I can help myself too. I've an article to read about helping to relieve your own pain through massage which I guess I should read. I know all the basics but there might be something new and it'll be a good read anyway.

Ouch

Pain. My muscles are starting to move again. They've been so stiff for so long and it ruddy well hurts. It's not the type of pain that I went into hospital with last time because it's not constant like that was. I can sit down and it's reasonable or I can walk and I'm fine. But then one of the muscles will move a little and the pain. The worst is in my right side and lower back. I've mentioned this before when it's been happening but this time it's going in for it big time and it is very painful indeed.

I've added a couple of MST10 to my morning and night doses. I don't take much morphine. I explained to me doc at the hospital that I'd prefer not to if it was possible but I think I'll up it a bit while this is going on. It's up to me and just at the moment I think it's a wise thing to do though by as little as possible. It should only be for a few days I guess.

I know I said that I thought this needed to happen to help with the healing. The stiffness and puffinness in my muscles going down, but I had no idea that it would be so painful. I think it'll be easier for things to heal if there's more flexibility, that would be so whether I had this illness or not but especially so with this type of illness.

And the muscles decided to go for it just after I got back from Tesco this evening, 12 hours after I'd taken me last MST, just as the effects would be wearing off. Well, at least it made sure that I didn't take a smaller dose before turning in for the night I guess. I don't take any oramorph before bed generally now, just me last paracetamol of the day. It's been happening sice Thursday.

I went down to the meeting on Friday evening just to see people and pick up the months schedule. I thanked them and said that I didn't know how I'd've got through this illness without them and all they've taught me. Well, obviously I would, but it would be seeing things in a different way and not in such a big picture. It would be very different.

My thanks goes out to everyone who's helped and supported me through this .

It was nice though to be able to go and thank these people. It's not just me they've helped but also the other people who I've talked to and been able to comfort through my experiences. Both there and elsewhere.

G'night

Well, be off to sleep soon. Didn't get enough sleep last night so will try to make up for it tonight. Been for a lovely walk this evening. It was mild and really, really nice.

Gave me sports equipment vouchers away to the people behind me this evening in Sainsburys. I'm saving them myself again. I'd stopped because I had a habit of saving them but not always passing them on so I generally ask the cashiers to give em to someone else. Those and the computer vouchers at Tesco. If the person behind me wants them then that's great, if not then I'll put 'em with mine.

The vouchers are a pretty neat idea.

I think I better go. I'm sleeping quite well at the moment regardless of all the problems. If I go now and hopefully fall asleep more or less straight away I can be up by eightish tomorrow morning. Do me exercises first and guided relaxation. That doesn't take long and I've fallen asleep in the middle of doing it before now. Thankyou W.J.Ousby. I vary the times doing the exercises and guided relaxation but sometimes it's out of my hands and zzzzzzzzzzzzz.

Back again.

Just back for a minute or two (or probably more!!!) Been having computer problems and health ones though maybe, just maybe the health ones might be slightly improving as the brown bruise like marks that had appeared on my arms are starting to fade. They are a sign of this illness and I had a few appearing on my arms again.

It really is a strange illness, related to rheumatoid arthritis, or an illness like it, but I think it's rheumatoid arthritis, where the immune system attacks cartiledge. In my illness, instead of attacking cartiledge, the immune system attacks the substance that joins individual cells to each other. Fortunately it's a rare illness.

And, as I've mentioned before, it's related to the illness the young girl has whose grandma I met in The Priors shopping centre.

The BBC are putting out an appeal for the charity, DebRA, that helps people who have the illness the little girl has got.

http://www.justgiving.com/bbclifeline


DebRA's site

http://www.debra.org.uk/

When I read the literature I got from the stall in The Priors I read how it took a couple of hours to tend to the illness every morning. My time then was spent feeling ill rather than getting up and having to deal with the kind of things the little girl was having to though ofcourse I had things like that as well. At the moment it's more the other way round, I feel better but a couple of hours a day and sometimes more are spent tending to the effects of the illness now.

It's a difficult illness. Speaking to the lady at the stall has helped me a lot. I donated some money and bought some things from the stall and the lady gave me some DebRA butterfly badges. I would like some more so I guess I'll have to phone the charity up and ask about them. I was very grateful that I'd gone over to the stall that day.

Up at eight!!!

Up, breakfasting and medicated. Was up at around eight this morning. Doing some sorting out after breakfast.

Must remember to phone me doc too today.