Not yet

I never take more than four steps these days to get anywhere. Four steps, enough to transit from wheelchair to bed, to settee, even to the loo. Four steps, that I have noted bear no resemblance to the way I walked just six months ago, suddenly, I am a stooped bent-kneed, bent back and a lot like a little old woman, without the “old”, thanks. I don’t know when it happened, all I know is that it has and I don’t like it. I discovered this new problem, again thanks to the podiatrist. No, she didn’t point it out, in fact, I didn’t stand-up at all when she was here. What I did do, was to lift my leg out in front of me, and rest my foot on her knee so she could cut my nails. In under a minute, there was pain running up the back of my leg and it just kept growing. The second leg was almost identical, just a little slower, but neither leg liked it and both told me clearly that straight, wasn’t a desirable position any longer. I hadn’t actually put any thought into how I stood, until that moment my second leg started to hurt. Somewhere in the back of my head, I was slotting all the pieces together, my legs are never straight any longer. I never stand tall, the stance that I had put down to hesitance about making those steps safely, actually had far more to do with tendons and muscles now setting into a seated position.

I had always thought that those old people, that I had seen throughout my life, walking slightly stooped, legs bent and hips flexed, did so because of painful joints. I thought that pain and fear of taking a fall, was the total difference, between, those elderly people who were fit and fast and those who had turned into snails. My picture of their lives has been shattered. Some might be suffering, that I accept, but some, just spend their lives seated and their muscles and tendons have seized up, just as mine have. In a handful of months, I’ve gone from upright to stooped, at every joint. Even when I sleep, which I do on my back, my legs are still not straight. My feet lie on their sides and my knees are bent. At no point, anywhere in my day are my legs straight, now because of pain, not originally, simply because I had to stop walking and I now sit all the time. I have just found the best example I have ever had for the saying “Use it, or lose it!”. I’ve lost it.

I know that I have related this to “little old women” but to be fair, the majority are little old men. For some I know this is due to a lifetime of labour that has damaged their spine and their joints. On that theory, though, white collar workers should never stoop, but they do. When you think about it, the reasoning to that one is clear, just look at the historic work split between men and women. Retirement appears and men settle into their armchairs, the woman continues to work. Before anyone shouts at me, please note the word “historic”. Those who continue to work into their 70’s and 80’s, male or female, all seem to acquire this stance much later, and now I think I have a better understanding of why. Don’t let granny or grandpa or even yourself sit all the time, as you really will get frozen in that position.

So what am I going to do? That is my biggest question today, what am I going to do about it? The first thing that comes back to me, is what can I do about it? I don’t believe that there is nothing I can do, but what I can is highly limited, if it wasn’t, it wouldn’t have happened to me in the first place. This wasn’t a lifestyle choice, this was a life imposed style, with no choice anywhere in the process at all. I have been aware for a long time, long before I even started to think about putting my safety first and to get my chair our of the cupboard, my muscles in my legs were tightening. Permanent contracture of muscles is part of MS, what I did wrong, was I did nothing when I was first aware of it. I don’t believe and never have done, that just because it’s part of any condition, that it has to happen quickly or without control of any sort. Physiotherapists won’t touch me, they know just as I do, that if you try to fix something in me, another part goes wrong in response. I still don’t believe that I can do nothing about it.

Right now I am sat here typing and there is pain in the lower half of both my legs. The calfs are the worst, but there is also pain in my shins and feet, but I am sure that I could gently exercise them simply by pushing my feet up onto their balls and lowering back onto my heels and raising my toes again. It’s gentle, it stretches and compresses almost everything that hurts. My thighs, well that one is harder. There is no way that I can possibly manage something like squats, but that doesn’t mean that there is no way at all, or that I can’t find any way of stretching them. At the moment, the only way I can come up with is while lying in bed. Clearly I have the opportunity when lying down, to push my legs as straight as I can and to hold them there until the pain pushes back. It’s not much, but it’s better than nothing. The day that we start looking at our bodies as a foregone conclusion is the day that we have lost. Yes, there are things that we have to accept, and I have. I can’t change the problem I have with weight, or how much I have to sleep, but if I can change or improve something that is right now causing me pain, then I will at least try.

I know without a doubt that the day will come when I will just give in, but it’s not here yet and that tells me a lot. Despite everything, I still have a strong will to live and desire to live it as well as I can. Yet, I still know the day will come, when I will just give in because I’m human. There is a point when our health becomes too much, and I am aware, of it tapping on my shoulder. I’d be an idiot if I didn’t. Just as I have heard and still hear, all those voices, the chorus out there that keeps telling me to “slow down”, “stop being hard on yourself”, “take it easy”, “no one will think badly of you”. Well, they’re wrong, I, will think badly of me and as long as I feel that way, well I can push those muscles a little harder, for a little longer and remind them, that I may be ill, but I’m not quite “old” yet.

 

Please read my blog from 2 years ago today – 25/03/2014 – Working the pain away

I think I knew the second I woke today that it was going to be a day spent not achieving my daily plan at anything like a normal pace. I didn’t want to wake up or get out of bed, I just wanted to lie there cocooned by duvet and comfortable with my head cradled in my pillows, I wanted to lie there and drift. Drift, that was the warning, that was my first feeling of the day, I wanted to drift, I was confusing want with fact as drift is all I seem to have done well so far today. I haven’t the slightest ability to move beyond slow or very slow and my brain just doesn’t want to play either, just happy to float along minute to minute not pushing or spurring me on in any way. So here I am…..

 

6 thoughts on “Not yet

  1. Listen to your own voice and do what it tells you.

    We outsiders – medics, paramedics, carers – will keep telling you to go easy on yourself. This is mainly for your sake, of course, but also because your taking risks or even tiring yourself frightens us. Particuarly when – which can happen when the brain is affected – your assessment of what you can do, sometimes turns out to be wishful thinking.

    Particularly we spouses/carers live in permanent fear of coming home and find you on the floor unable to move, or more generally, that your hands will not have allowed you to push the alert button when in need.

    So, when we say to not “overdo” it, it is as much for our sake as it is for yours. Therefore: go on and do what you think is best for you. If you think that you need to disregard our voices, then do so! The anxiety may be painful for us, but we just have to put up with it: it is your life, and only you can decide how you want to live it!

    Liked by 2 people

  2. Reblogged this on and commented:
    I may not have MS but this is so relatable with my cervical degenerative disc disease and fibromyalgia. So many days, I fight the pain to keep my mobility from decreasing.

    Like

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