Last night turned out to be the worst evening I have had for a while, I just didn’t know what to do with my body. I spent the entire evening trying to break the feeling in my muscles, they were tense all the time and no matter what I did, there was no relief at all. Trust me I really did try everything, I stretched them in directions I didn’t think possible to twist my arms into, I pushed again solid objects, I pulled solid object, relaxed them, gently and forcible, but all that happened was 2 more hours of hell, with one change only, I was sat on the settee watching TV rather than sat here at my PC. I had an idea that I had nothing to base it on other than it passed through my mind and was a possibility. For months now I haven’t actually lain down properly, I had discovered that if I had the slightest rise at the head end of my bed, I was able to breathe just that bit better at night and getting to sleep was a smooth and simple process. I couldn’t help wondering if this sleeping position was putting some sort of pressure on a nerve in my back, triggering the whole thing, it was a possibility, slim, but a possibility. Once I was in bed I lowered myself to a totally flat position and lay there until I drifted off. I slept right through to the alarm, totally undisturbed, woke feeling as stiff as hell and slowly managed to get out of bed, just a few problems in getting dressed though as I could reach down to my feet to allow me to drop my feet through a rolled up trouser leg, it meant I had to fight to get my feet through the full length of the material, catching, getting stuck and eventually done. My back was and still is painful low down, I guess that being flat was a bit of a shock for it, one it didn’t like, but it didn’t work, my theory was a total waste of time as one hour after getting up, I am already feeling my muscles working on their tensing up process all over again.
I am trying hard to vary what I am doing, so I am not just working my way through things as normal. I have worked my way through collecting the names I need to thank for their connection on Twitter and for sending out my new #PSMyWords, whilst also putting in a few lines here every now and then. I just lost an hour, my body was so tense that I simply couldn’t stand it any longer, so I went to lie down for a while, luckily I set my sleep timer for an hour, just in case I fell asleep but I didn’t expect to, it is after all just a couple of hours since I started my day. Seconds later there was the alarm sounding, one hour had gone. Clearly, there is something wrong, now I am convinced this is more than just a bad couple of days as if there is one thing I never ever manage to do is sleep in the morning, yet I just did. I am actually doubly surprised by it as I am also waiting for the shopping to arrive, things like that always have me on the edge and everything I hear outside, I wait for the doorbell to ring, but there I was asleep. When I woke once again my body felt normal, but already my thighs are tight and so are my upper arms, I have made a decision to cut everything to the bone today, to do as little as I can get away with on twitter and to try and let my body rest as much as possible. I don’t know what it will achieve but all I can do is hope that it make a difference, I will then reassess how I am and what I am going to do tomorrow, something has to make a difference, something has to break this down and let me at least head back to a form of life that is livable.
I said the other day that this was also one of the first symptoms of my MS, at the time it wasn’t as severe as this bout, but it did set me thinking about how often this has happened and what the conclusions of it were, I lost count, but I clearly remember the worst bout and that was 7 years ago when I lost the use of my left hand, it was totally in my left arm on that occasion and I lived with it for both a couple of months prior to losing that arm and for several more as it returned to use. I truly doubt and sincerely hope that I am not going to lose both arms and legs, that would be just too much, but I am getting more and more wound up by the whole thing. When your entire body is doing things that you can’t get your head around and there is are no clear answers to, it does make life difficult, not just because of the tension, pain and discomfort, but because you can’t actually manage the smallest daily tasks without making the whole thing worse. As it is spreading, not retreating, like so many other things I just have to wait, but I am losing patience with myself. That feeling that any second I am going to explode isn’t now just in the muscles that are affected it is in my mind as well, as it too is taking the butt of it. Mentally I am tied up with flexible bands that are pulled tighter as the day goes on. I’m not sure if I can really explain that there are these two sensations working together, everything feels as though it is been crushed, as if each individual muscles is in a vice, I know muscles are made of fibres running along beside each other, but reshape them in your mind, more like balloons. Whether I am doing something or if I am totally motionless, the vice tightens until the balloon has been squeezed almost beyond its limits and there is only one option left, to explode. Clearly, muscles don’t explode, but that is the feeling, in different places, different muscle groups and all at different stages. When it overpowers my ability to do anything, then I go to bed, I go there because what else can I do, it is the only place where I know my body is fully supported and doesn’t need anything from me to just lie there. There is a point where it has slowly released and sleep not only takes over but is incredibly welcome, I have escaped and sleep brings true relaxation, my body returns to being my body and not something I just want to leave somewhere like a piece of unwanted clothing. What else can I do?
Please read my blog from 2 years ago today – 25/06/12 – Update, views and affirmations
Two Rooms Plus Utilities 