I had pushed myself to do as much as I could yesterday in my much shortened available time, as I really don’t like things missed or not done, so instead of completing then playing a game to relax, I had no time for the game. By 7:30 I had made it to the settee, but I was in pain all over the place and muscles were twitching annoyingly. Routine shot by the entire day had left me physically shot as well. I really don’t think doctors who don’t specialize, and in some cases those that do, don’t understand what physical effect any day has on someone with MS. If they had to spend a week in my body I would guarantee you thing would change.
The last couple of days seem to have taken there toll on me, although Thursday was a normal day I was too tired to deal with much of it. With that as my base yesterday was just too much, as by last night I couldn’t even slip into sleep with the easy that I normally do. Most nights I lie down and between ten and thirty minutes, I am gone, not so last night. I have for years now used a relaxation technic that always works no matter what my pain is like, as long as I don’t go into a string of spasms, there are no problems. With in seconds of lying down my entire skin started to burn, with areas of sever pins and needles, numbness and shooting nerves, all the things that relaxing have no effect on at all. I remember hearing Adam go into and come out of the shower, so that was 45 minutes, and I think it was the same again before I settled into what was a disturbed nights sleep. I kept finding different bits of me outside the covers, not just frozen and some drained of blood, interesting as many were hanging off the mattress. I often find this is the pattern when I am over tired, sheer exhaustion logically to me would add up to dropping into a comma, shocked a few minutes latter the alarm telling me I have had 10 hrs sleep. Bodies are strange and permanently annoying things to have to live inside.
When I got up this morning it was just ahead of the alarm as I needed the loo, but I was happy enough to get up and get on with another day. I remembered yesterday when I made it home that when I fist sat down on this chair at my PC, I was amazed at just how comfortable it felt. You aren’t allowed to take your own wheelchair to the hospital, once they have carried you to the ambulance you are strapped into a normal seat, then at arrival at the hospital they fetch one of those terrible patient transport chair. Although they have wheels I wouldn’t call them a wheelchair, they are more like normal chairs with shopping trolly wheels. To make things worse they pull you around in it rather than trying to push it, so your view of the world is totally wrong. I think on top of all the other motions they put you through this adds to that sick feeling. Who ever it was who designed those chairs, forgot to add a reasonable layer of comfort, once you have been in it for over an hour, your backside hurts like hell. Getting home and sitting on my double cushion system, of a gel cushion with a blow up one on top, felt like total bliss. Like so many of those feelings, it didn’t last, once again I feel as though I am sat on a mass of pain points and there is no relief. I have now been waiting since the beginning of June for an occupational therapist to come to the house to see if they can supply me with something more comfortable to sit on. I was warned it might be 6 months but here we are at 8, I have phoned them a couple of times, but they still couldn’t give me any idea when they might be here. I am making a guess here but I think they haven’t seen me yet because painful sitting is low on their priorities and they also know they won’t be able to help, it would just be another of those, lets talk and sorry we can’t help visit, so why come at all.
I frequently think about seeing what I can on line but then the normal issue of those on limited income, all these things cost money and normally more than I can afford to spend. I used to look and always land up disappointed, so I suppose that is why I have stopped looking, I generally avoid anything that causes disappointment I prefer to find things that make me smile, it doesn’t remove pain but little does, at least a smile makes me just that bit happier and we all need that.
Two Rooms Plus Utilities 