All too often things happen that you don’t even notice until suddenly something happens and you realise the truth of what has slowly been happening all along. I was lying down yesterday with my feet drawn up so that my knees were off the bed and in the air, I don’t know why I suddenly put myself in that position as I haven’t lain in bed like that for years. But there I was with my both feet flat on the bed, both feet slowly sliding away from me and without huge effort I couldn’t stop the slipping. We all lie like that from time to time and never even have to think about holding our feet in the same place, the just stay there, no thought, no effort, just steady until we start to drift off into sleep, then and only then they slip slowly until our legs are also flat on the bed. I wasn’t falling asleep, I was still very much awake and even more so when I found I couldn’t keep my feet where I wanted them without true effort, not a slight replacing that didn’t work they just slid again, I simply didn’t have the muscle strength or tone to maintain a steady position. It was one of those moments when you wake up to the truth that after years of not using them, muscles fade and stop being able to do what they once just did because that was what they were created to do.
It was a true wake up a moment as it made me start checking other muscle groups and made me realise that yes I moan about my weight gain, but half the problem isn’t the weight it’s the fact I don’t have any muscle left to support it. Lying there in bed my stomach is totally flat, stand up and I look 7 months pregnant, weight is part of it, but I think muscle weakness is the bigger factor. I don’t have the muscles to pull my stomach in, I can make a stab at it and for a few seconds, I manage to then it all collapses again. For some reason I suppose because it is the easiest part of me to see it, that I have skin and loose fat on my arms just below my elbows, that I can grab hold of a full inch of skin and fat in length about 6 inches, that never used to be there. It feels like it isn’t connected to anything other than my skin and when I started to check my body yesterday I found exactly the same thing over all of my body, some area’s had more fat than others but it is the fact it is not connected or supported in any way other than by my skin and skin isn’t very strong as we all know. I hadn’t seen the muscle wastage because the fat has been hiding it. Yes I had noticed that my forearms look thin and somewhat useless, that it is part of the body that holds fat differently in the first place and I had seen when I took my fluid medication that my lower legs likewise are skinny and frailer-looking than before, but I just hadn’t made the clear connection before.
Muscle wastage is very much part of MS and also part of what happens when you stop really using them, they slowly break down and also turn to fat, a loose loose situation if there ever was one. It is a fact that faces all of us as we age, the less we can do because of aches and pains the more our muscles waste and the less they can do, a circle that always eventually ends in not being able to do anything at all. MS just speeds the whole thing up and as the nerves fail in sending the right messages, the less an individual muscle or group are used the faster the wasting, probably why it is easy for me to see in my arm. Year of DJing and carrying several stone of records daily over sometimes longer distances than I ever thought possible, followed by years in a wheelchair meant my arms were muscular, now they are just skinny flabby lumps I prefer to hide rather than have on display. From the first day that I became housebound I have tried to as much as I can to check my posture, both seated and when I stand, trying to keep using those muscles, even over-use them in some ways in a hope to slow the whole thing down. Either that has totally failed or the difference I made has now run out.
I don’t have the energy to even do exercises sitting down, I have tried but I can’t, the fatigue that my muscles suffer from trying to do something silly like sit and hold my foot in the air, is tremendous and it drains and causes pain that unless you felt it, you couldn’t understand. No one ever thinks the day will come when they can’t do something that simple, I remember being able to lie on my back on the floor with legs together and being quite happy to hold my feet 3 inches off the floor for a count of 50, if you have never done it try it, the pain in one leg being held off the floor when sitting is unbearable before I even get to 9 and it doesn’t stop when I put my foot back on the floor. I have accepted for a long time now that I have a fraction of the strength I once had, but to find that I can’t even lie down with my knees drawn up and to keep my feet still, is horrific.
A few months ago I asked Adam to not leave the kettle with more than enough water in it to fill one mug, just enough to make my porridge in the morning as I was finding it hard to lift it and pour when there was more. It seemed on the surface to be the only thing that had changed in my strength for a while, but combined with the heightened sensations and so on, well I thought little of it other than what it was. Now I see it is a much bigger picture, one I guess that I was trying not to see, the ostrich position is still one I can manage with ease.
Please read my blog from 2 years ago today 09/06/12 – Tremors and twitches
I realised today that there is a symptom of my MS that I haven’t mentioned before, I have now for years had full body twitches,somewhere in my spine around my waist level there is a twitch, it varies a lot and used to be just an occasional occurrence, mainly when my stress levels were high. The Twitch causes all of my upper body to move involuntarily, it might be a tiny movement or it might be a…..