So here we are again. It’s been 700 days since diagnosis and it’s time to celebrate another 100 day milestone smile_party. Because the various day-to-day events and meetings are covered comprehensively in my calendar updates I thought I’d take this opportunity to focus more on the effects that the disease has had on my health over the past three months.

As I’ve written in previous entries the disease is affecting me on various levels now. The one that is causing me the most concern lately is my decreased mobility. Most of my time these days is spent sitting in one seat or another, either at my desk, at the dining table, or on the sofa. Anything more than a short walk nowadays is becoming a distant memory. My weakening leg muscles and unpredictable balancing system have meant that standing up and moving about have become risky ventures. These days I only have to bump into something with my foot and it will cause havoc with my balance threatening to topple me over. I also now have to be very careful when leaning or bending too far in one direction or another in case I reach the point of no return. Even swinging my arms and using momentum to reach things now carries a risk as the weight of a swinging arm upsets my balance. Navigating stairways has become very traumatic too especially when looking down. My own staircase goes through a U-turn and it was only this that enabled me to tolerate being able to walk up and down it for so long. Had it been a straight and steep staircase than I would have lost that ability a long time ago. Of course since the accident I have not walked down my staircase once. Another one of my abilities consigned to the history books.

Lately I feel like I’m trapped between a rock and a hard place. On one hand I am fearful of standing up for very long in case my legs give way on me, whilst on the other hand I am worried when I’m sitting down in case I cannot get up again. But sitting down all day means that my leg muscles aren’t getting exercised so when I do have a need to stand up my legs feel even weaker. It’s a vicious circle. The problem at the moment is that I am at that awkward in between stage; neither fully mobile or fully immobilised. Every time I go to stand up or walk around I introduce risks.

Something else that has become noticeable in recent times is that I’m slowly losing the ability to shrug my shoulders which can be pretty annoying when you’re trying to reposition clothing that is causing an irritation. I’m worried about losing this ability for another reason: I use what little strength there is left in my shoulders to help pivot my ergo rest which I use when typing at my computer. If the motor nerves in my shoulders completely die it’s going to make life very difficult indeed.

And another recent addition to my list of woes is that the muscle tissue in my hands is stiffening, most particularly in my left hand. I’d become so paranoid over the fear that my hands might start to claw inwards making it difficult or painful to stretch the fingers out again, that I made a conscious effort to keep my hands stretched out flat. So for example when I went to bed I would lay my hands on my legs with fingers stretched out, or when I was using a computer my left hand would be resting flat-out on the table. So now I am experiencing the opposite effect and it is getting very hard to draw my fingers inwards. Another side-effect of an inactive left-arm which is hanging by my side or resting on my leg most of the time is that the hand is starting to show signs of puffiness in the skin. My right hand is in much better shape because it is getting a lot more exercise as I use it to control my computer.

The physical act of eating and drinking (as opposed to the muscular actions of chewing and swallowing), are becoming ever more difficult. As my hands weaken it is becoming harder to hold onto things such as a fork, and trying to position my hands and arms at mealtimes takes a lot of my energy. The continual act of bending down low over my plate to compensate for arms that I can no longer lift makes my lower spine ache. It is for these reasons and the fact that eating in general is becoming a more tiring activity for me, that I am transitioning to having my carers feed me. It’s something I’ve fought hard to avoid but of course knew that it would happen one day. At least this way I can sit up straight whilst avoiding back ache and reducing the chances of choking.

Drinking brings its own problems now. If I try to stretch my head too far to reach a straw I find that the muscles at the back of the neck are too weak to support my head for very long in that position and I feel my head quickly falling towards my chest. I have a weak cough these days too and that brings its own hazards when eating because if dry crumbly foods get stuck at the back of my throat I don’t have enough cough to easily dislodge them so I have to rely on washing them down.

Another task I have just had to give up is undressing myself because I no longer have enough strength or range of motion in my arms to get clothes off my shoulders, unbuckle belts or remove underwear. So until the funding approval comes through for additional hours I am having to get my last carer of the day to undress me before she leaves. But as this is nowhere near the time I go to bed it means that I have to continue working at my computer wearing little more than a smile. Memo to myself: make sure the web cam is switched off smile_teeth.

And embarrassing as it is to mention (so don’t expect too much in terms of detail) even toileting is becoming very stressful because my arms are becoming so badly paralysed I’m having difficulty fumbling with clothing and wiping myself. On top of this my upper leg muscles have wasted to the point where I’m having difficulty lifting myself off the toilet. In fact I recently got trapped there for a short while as my first attempt to stand up failed and I fell back down. It wouldn’t be so bad if I had some strength left in my arms as I would then be able to have a frame around the toilet and pull myself up but sadly I depend totally on my thin legs and will need help with this soon.

The one area that doesn’t seem to have significantly degraded since earlier in the year is surprisingly my respiratory system. Sure it’s dropped a few percent in some of the tests I’ve had recently but nowhere near the dramatic drop I experienced over the winter months. I’m pleased to say that I still get a good night’s rest and don’t wake up with terrible headaches or nausea. Having said all that I’ve just started to experience a diminishing appetite, particularly in the morning. From what I’ve read I understand that this could be linked to a weakened diaphragm so I’ll have to keep an eye on it and hope that it picks up soon otherwise I shall be seeking nutritional advice.

And perhaps a worrying sign of things to come… I’ve noticed lately when I pull faces in the mirror that my cheeks are showing signs of depressions. A portent?

So there we are, my current state of health. When it’s all written down like this it does seem very worrying doesn’t it? I’m fast approaching a point where I will need help with the most intimate of life’s daily functions. The recent accident I experienced reinforced how helpless I am becoming as I lay on the floor twitching like a fish stranded on a beach, utterly powerless to do anything to help myself. Am I worried? Of course I am; I wouldn’t be human otherwise. But ultimately there is nothing I can do about it and the best I can hope for is to make each day count and to try and keep the mind occupied; the one part of me that is still ‘me’.


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