It’s 10:30 am, I want to sleep, there is no control just a growing desire to close my eyes and sleep, even though I am not in my bed. I woke when the alarm roused me and waited patiently as the elevator lifted me to a position where I could at last start to turn myself to allow my feet to find the floor. I never turn the light on as I have everything arranged the night before so that I can find it all in the morning, pyjama top hanging on the handle of my draw, pyjama bottoms lying exactly as I took them off, allowing me to simply slide my feet into the central hole and pull them up, no effort, no problem, oh and of course my socks. It is actually better to put your socks on first, that way no toe nail or skin can catch on the material which the pyjamas are made of and it all just runs smoothly. It was as I started to pull up my pyjama trousers, my arm hit of something where nothing should be, I brought my hand up and started to investigate. I couldn’t believe what I found, was once again it was part of the elevator, it was sticking out over the bed frame, somewhere it had no reason to be. I know I said they were brainless but when the elevator caught on the headboard again this week, I though that was bad enough, but this, well it just proves how little they are capable of. Adam and I haven’t jointly looked at it yet, but in some ways I think calling them back again would be a better option as it would show the company that there workmen need a bit more training.
Every step I have taken this morning has been one of pain, a pain that changes as my foot passes from flat to the floor and into the air, not even one inch of it, without my being aware of precisely the position and location of every tiny section of my foot. I hate it when things like this happen, no one in normal life are even really aware that they have feet, far less where they are and what they are touching. But mine have to make their presence at the end of my leg, well and truly known in every way they can. So many things are like that, it is I suppose one of the oddest things about having a condition that effects your nerves. Once something has activated them, they continue to send messages loudly to your brain, not always pain, or burning, or even pins and needles, there are a million other sensations that nerves can conjure up. I can still remember a time when I didn’t know where any of me was, most people don’t, until something silly happens. Catch your foot and twist your ankle and you know then for a while just where that foot is and what it is doing. In normal life you don’t think about any of these things, you don’t even go through any processes to use a nerve, you want to run and you run, but what if that first action doesn’t trigger the muscles used for running, but trigger pain as the nerve has muddled up the entire message. MS tunes up all those signals we use daily, then with joy it muddles all of their everyday uses up, apply’s it to every nerve in your body, singularly or in groups, just to proves who is really in control. There are no easy answers when your body goes mad and takes over so strongly that you are in no doubt that not only is your body there, but it’s reminding you of all the variation it can come up with.
I find myself all to often walking in a fashion I would have expected to see an elderly person, or from someone recovering from some major accident. You don’t move forward so much as rock from side to side, with just enough forward motion to prove you are actually going somewhere. Your leg muscles are stiff and won’t give you the freedom to simply swing forward, or swing anywhere, but it is something this simple that shows the real cruelty the MS has hidden in it, instead of 20 steps on painful feet, you are going to take 50 or 60 with pain all the way. Think of any single action you will have to take today and then imagine that something will go wrong with it, not once but every time. It’s not surprising then that I have discovered I have a habit, possibly not one that will do me any real harm, although it would be a problem if my life expectancy was normal. I have found myself not grinding so much, as clamping my teeth as hard together as I possibly can, I don’t know I am doing it until I am suddenly aware of the pressure in my jaws. I have probably been doing it for a long time, but it is when I am having problems breathing that I noticed that I was adding to it by not letting my mouth open at all. The second I am aware, I realise it, I have to stay aware checking there is a gap between top and bottom teeth for the next 10 mins or so, if I forget it just locks up again. I can’t be totally sure it is connected to my breathing as there is one other possibility and yes it’s back to those nerves.
I get a lot of twitches from muscles all over me, but one that I really hate is when suddenly a messages flies to my jaw, twitching and shut my teeth together in a flash. The real problem is that usually when it happens, I manage to also bite my tongue, something I could do without. Lightning speed twitches carry a whole range of problems as you might be able to imagine. Nothing is safe, it is one of the main reasons things get dropped, as the muscles are told to relax and they do. Often items fly from my hand, the twitch will be somewhere in my arm and the result is a fling. It’s amazing where lit cigarettes can go and how hard it is to reach them when your body won’t play the game, or maybe that’s all part of the MS game.