Toughing it out

I eventually slept yesterday for 2 hours during the afternoon, I did go to bed in the morning but it just didn’t work. There are only two occasions in my entire life that I remember being able to sleep in the morning, other than that I don’t know why, but no matter how ill I have been or how tired I am, I lie there awake unable to get past wanting to sleep. So I found myself sitting here so tired that I was feeling physically sick and every movement of the cursor on the screen was making it worse, a sort of motion sickness if you like. Adam came home for lunch as he always does and then I went to bed and slept, but not well. I had one of those vivid dreams that I know I have had before, it is like an ongoing saga, where I know locations, but each is muddled into others I also know, just as the people are. I think it has been playing out for about a year now, a new section every now and then, but so vivid and so strange that explaining it is impossible, just as most dreams are. Last night though was the opposite, my head touched the pillow and I was gone.

Adam thinks that it has something to do with the weather, but I just don’t see it, yes I do have issues like everyone with MS with the summer heat, but it hasn’t been that warm here. Not even to the point where I wanted to open the windows, which I normally run to when the heat is too much, he says it has been close but I have noticed nothing. Just to see if he was right, I opened the windows over the late afternoon and evening, it made no difference at all. Today there is little to no change, other than I have already used most of my energy supply already, the shower I have been putting off for the last few days, just couldn’t be put off any longer, there are limits, the point when you disgust yourself and just can’t bear your own body any longer had arrived yesterday, which probably didn’t help with how I felt, so this morning I showered. Now I feel clean, but that is the only improvement, I discovered that once again the area of skin under my right breast had started to break down, I know it is my own fault as I hadn’t been taking care of it, something that always slips when you can’t even manage the rest of life.

By now you would think that I would expect these things, be used to them happening, but somehow, somehow I am shocked at just how fast I change from someone who is manage well all the issues my health throws at me, to someone who can’t even take care of one small area of skin. Every time that I hit one of these points where I am wiped out by it, I think I have come to the worst it has ever come up with, this again is the worst, I know I have never been through anything like this before. Yes, the exhaustion and the pain, they have hit these levels before, it is the never ending sensations just under my skin and the fact it is over my entire body, not just a small section here and there, that is really getting to me. Last night just before I went to sleep I could feel quite clearly the muscles in the centre of my face twitching, all of them centring from the tip of my nose out to a two-inch diameter. I was too tired to do anything about it, but I wish now that I had looked in a mirror, just to see how bad it was, or if it was just another one of those things that can be felt and not seen, as I now have this horrid impression in my mind of spending my life with it all visibly twitching.

I have been through many stages where muscles have visibly twitched, the worst are those in my spine and in my hands. The second that I relaxed and I stopped using them to do something, they would start to twitch, I have over the years got used to the one in my spine. Everyone can see that one as it causes my entire body to move, I have lost my core stability, usually, it is just gentle shifting that never stops, my body is always on the move. Every now and then it will cause a sharp jerk that sends motion through, out me when my hands join in then life can get really interesting, especially when you are eating and drinking. I gave up trying to eat at a table a long time ago, the distance from table to mouth is just too far, putting a plate on a thick cushion on my knee and leaning forwards is far easier but still not always successful. I hadn’t really thought this until now, but it could be on of the reasons I prefer cold food I can eat with my fingers, that way I don’t have to balance things on a fork or a spoon. I do know without thought though that I have hot food gone cold and as I now eat far more slowly than I used to, that starting out cold is an advantage, that way I am happy to eat it all.

Today is going to be another tough day, it has started that way and I have no reason to expect it to be anything else, no single sign that anything has improved, so I guess I am just going to have to get on with it and hope that tomorrow brings just a little improvement, that all of this is just a phase, as phases don’t last. They appear, do their damage, leaving me with something new or something worsened to cope with, otherwise well I guess I am just going to have to start all over, adapting to the way things are. That is the big question, is this just a relapse, or is it progression?


Please read my blog from 2 years ago today – 13/06/12 – Dark before more dark

This morning I woke with that puffy eyed feeling that told me my day of on and off tears was still visible to the world. I had gone through the afternoon having a few drinks and distracting myself with mindless games on my PC. I did go to my bed as normal but I wasn’t able to sleep, lying there I was making things worst as my mind was running through the most hellish imagined future it could find. As tired as I was when I heard Adam unlocking the door I got up as I wanted…..