I have just spent a couple of minutes fighting with my chair, it is a really cheap silly little office chair I bought about 12 years ago and it is just so annoying. It was one of those things we bought not long after moving in here as I needed a smaller chair that fitted the space where my desk is, that, along with the cost was all I thought about then. I have looked since, but finding something small enough is now actually really difficult, so I have adapted it a little by adding the cushion that belongs on my wheelchair. It has made it that bit more comfortable, but the cushion slides around as I try to sit and gets caught on the legs of my desk causing it to slide off from time to time. That along with the height adjuster that no longer really works and the wheels that I think have brothers on shopping trolleys, well I often find myself struggling as I can’t hold myself in the air as it seems to want me to do. Adam asked me the other week why I didn’t just buy a new one, well I wish he would find me one as I can say with certainty that I couldn’t find anything close to one that would fit in this position, the only place other than the kitchen, which I don’t want to be sat in every day all day where my PC could possibly go. It is just another of those things that if I were fit, I wouldn’t even bat an eyelid at, but being the way I am, well it just makes life that little bit more difficult.
For the last few weeks, I have been so caught up with what has been happening between Adam and I, that I haven’t really been writing directly about my PRMS, no it hasn’t gone away, it’s just when life is turned upside down, well the every day has to fade into the background for a while. If I am totally honest the last couple of weeks have led to more pain than I normally have, but that is for a mix of reasons, not just the emotional upheaval. With Adam now back actually coming to bed each night, I can no longer sleep with the mattress raised at the head of the bed, I did try using pillows stacked in a cross hatch but they just didn’t work for me at all. In fact last week I had a night with almost no sleep until I gave up and removed them, which left me lying flat, but I slept. I have now spent 4 nights flat out with my normal 3 pillows and it isn’t working for me either, every morning I am waking with a painful back and unable to move with any ease for quite a while after I am awake, plus my breathing is also being affected. It was because of my breathing that I first raised the mattress, I find that when I am lying flat that the pain in my rib cage is far worse than it is when I am at an angel, something strange really happens to me when I go from vertical to horizontal, it seems to be a green light for my muscles to go into spasm. I can only guess that I the change in position stretches them out and that is what they don’t like, as long as I am hunched, as I am most of the day, they are, well happier. I can’t be sure if it is the new sleeping position or something else, but the pain around my ribs has been increasing in the last few days, as has the pain in my thighs. Whatever the reason is, it is the pain in my diaphragm that is driving me nuts. The pain seems to run exactly along the line where it is attached to my ribs, it follows the exact line of the base of my rib cage and it is getting sharper and sharper, especially at the two lowest points to the front of me. Every breath I take feels as though there are small razor blades being drawn back and forward with the movement over about a three inch stretch either side, the pressure from the base of my diaphragm up to just below my breasts has become truly uncomfortable most of the time, I seem to be spending more and more of my time trying to breath using just the top half of my rib cage, that way I avoid the worst of the pain, but I can’t truly take a deep breath that way, so occasionally I just have to take the pain. All of that is caused by my PRMS, my Emphysema only affects my actual lungs and they don’t seem to like any of this either.
The last couple of weeks for the rest of my body has mainly been causing a heightened numbness, right to the point where areas feel as though they have disappeared. I am finding a lot recently that parts of me just go to sleep, a bit like having an injection at the dentist and you can’t feel parts of you face, well I will suddenly loose a limb or part of one. It is really odd trying to walk when you can’t feel part of your leg, it may be working fine, but it feels all wrong. It’s nothing like when you have cut off the blood by sitting wrongly, then it doesn’t want to work and it feels more spongy than gone, it is more a case of it just not being there as I don’t receive the sensations of touching the floor, or muscles tensing as I take a step, it all depends on which area is gone and what I am asking it to do. When I lost my left arm, I lost everything, feeling, motion the lot, it was just this dead thing that did nothing, losing sensation doesn’t compare in any way to that and you just aren’t sure exactly where that part of you is. I know that sounds odd, how can you not know where your foot is or your hand, but if you can’t see them, they can really disappear and you have to make them move or bring them into sight, just to check they haven’t fallen off. I think that might have been behind the problems I have a few weeks ago when I found myself unable to stand one morning, it felt as though my legs just couldn’t take my weight, which is a actually how it feels when part of me vanishes. I think that I may have been misreading things, it wasn’t that they couldn’t take my weight, so much as I thought they couldn’t as I wasn’t getting the right signals from them.
There is a fear is one thing that I still find hard to handle, the fear that something is just going to die as my arm did years ago. Once you have been through a limb dieing on you and all the work it took to get it back to where it is now, well there is this constant fear that it will happen again and it could happen to any part of me at any time. I know I was so lucky to get the use of my arm back, even though it will never be perfect again, it at least works, the biggest damage it really did was to leave me waiting for it to happen again. The last few weeks of losing bits of me means that every time I am left waiting anxiously to see if it comes back. I guess somethings are with you forever.
Please read my blog from 2 years ago today – 03/02/13 – Pass me a hammer