Wasting or withering

Yesterday I had my shower. Nothing that odd in that as like everyone else in the world, I do have to wash, but it was what I spotted while I was in there that actually shocked me. In the last couple of weeks since being once more up and about after my week in bed, I have felt weaker than I remember ever feeling before. At first I thought nothing of it, I just put it down to lack of food and slow recovery. I have after all been slowly losing my strength now for many years, not being able to lift thing at all that I used to lift with ease. Now two weeks in though I did expect to be seeing some improvements as it is behind my feeling as though I am fading at an increased speed. There were also odd things like I noticed that my knee high socks weren’t just pulling on with ease, but they seemed to have left over material once they reached there. I did check my weight once I was able to start eating again and yes, I did lose half a stone while lying in bed, not dramatic either, probably about right in comparison to my memories of illness, so nothing to worry about and I am sure it will return whether I want it to or not.

I was washing my left arm and was suddenly aware of how pathetic my forearm looked. It was all skinny with an odd shape to it as it didn’t seem to grow much in width from wrist to elbow and when I matched it to my right arm, they were completely different from each other. Even the quantities of skin and fat that I can grasp bear no resemblance, my left arm appears to withering. I continued to pay more attention to my body from there on and discovered there is a reason why my socks seem to have grown, both of my lower legs, but especially my left one have diminished in girth. I remember noticing a long time ago the problem with my arm, but back then it wasn’t as pronounced as it is now and once I was out of the shower and could look in the mirror, I saw the difference in my upper arms too. All the muscles that I have felt getting weaker are now clearly visible in their absence. The result is that I now have an even odder looking body than I thought I did as the fatty flab on my limbs that gets me down now has even less of a muscle structure to support it.

I know it must have been happening slowly, I just made the mistake of actually looking. I don’t normally look at myself at all if I can help it, it’s one of those things that is just too depressing these days. Once you have been unable to manage what even the most unfit healthy people do, your body changes in ways that you just don’t expect. We don’t expect it as none of us are capable of seeing ourselves in any other way than the image in our heads. I for one, hold myself at ages 30 – 35, odd I know most people chose somewhere in their teens, not me, 30 – 35 was without a doubt the time I was at my fittest, thinnest, strongest and closest I ever got to my perfect view of myself. In other words, the mirror image fitted exactly the image in my mind. Mirrors became bad news about two years into my being housebound. The weight had started to pile on as I had gone from very active to sitting doing nothing. Clearly exercise had been off my list of activities a long time before that, but it is surprising how fit just being in a manual wheelchair really keeps you. Especially if like me full speed was all too often the only speed that I went anywhere. I had several near misses in the office where I nearly plowed down different members of staff as they stepped into the corridor without looking to see if I was there hurtling towards them.

Once your eye catches something, well you can’t help but look closer. Stood in the shower it was bad enough to make the discovery that I am withering, but the more I looked the worse it seemed to get. Standing in front of the mirror was just plainly painful and I had to switch off my brain to it as the 32-year-old me was having a breakdown. Once I was dry and back through here, I took a tape measure and checked my arms. There is a difference of an inch and a half between my arms when measured just below my elbows. I have known for a while that my muscles have been slowly diminishing, everyday life has made that clear to me on many occasions. Seeing it like that is somehow different, even shocking. I don’t think any of us, regardless how long we have been ill actually think we will be able to see ourselves vanishing like that. I now have this horrid image of myself in the future of being nothing but bone, skin and fat, without any muscle there at all to support anything. It doesn’t matter how hard I have tried to lose weight in the last few years, the result is at best I can now hold it steady. Getting rid of fat without exercising is never something that happens with ease, even if I can reduce the flab, I still don’t have the muscle there to support even an once of it.

When I took the tape measure to my lower legs the difference was even bigger between left and right. I know because I used to be obsessive about my body shape that my left calf was always half an inch thinner, but nearly two inches is silly. I don’t actually understand that one, as to the best of my knowledge I haven’t taken up hopping around the house on my right leg. My arms make sense, I am right handed so I use my right arm all the time, even if it is just to lift a glass to my lips, it does get exercise, unlike my left that just lazes around. I did when I was first housebound to try and do some exercises, nothing amazing like weight lifting just the gentle stuff. I had two huge problems with it that led to me stopping totally. First it was the gentle bit, in my 30’s I exercised for several hours a day and there was nothing gentle about it. I would be pouring with sweat, out of breath and healthy exhausted by the end of it. Secondly, it was so boring! I had a sheet that had been given to my by the physios, all the exercises were either done sitting on a chair or lying on my bed and I just couldn’t get into them at all. They felt so pointless in comparison to what I had done in the past and so slow. I knew that they were all I could realistically manage, but that just made me feel pathetic, which at the time was worse than I could imagine the consequences of not doing them. I can’t blame anyone but myself for how I am now, if I had done as I was told and kept at it, well maybe now I wouldn’t have a body that all I want to do is hide.

It’s too late for me to even think about trying to exercise. I don’t have the energy that even the most gentle of the most gentle exercises I can think of. The best I can manage is to clench muscle groups whilst praying they don’t trigger a spasm. With so much of my body just looking for the excuse to do something horrid, just moving when I have to is often a risk. Only time will tell what my body has waiting for me, but I have to admit, I wish I had been strong enough to get past that feeling of being pathetic and persisted with the program.

Read my blog from 2 years ago today – 5/07/13 – The hardest conversation

Yesterday I went through what has to have been one of the most tough half hours in my life. We all have those milestones where we have no choice but things have to be said or things have to happen, but sitting with my daughter discussing exactly where I am now with my health and how that clock…….

Muscles what muscles?

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…..