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…..


Through our eyes

I have always thought that it is a good thing that we all have our own personal image, not just in our heads, but even in our mirrors. If I had trusted and believed my mirror, I would have been heading to the surgeons asking for chunks to be cut off, for no other reason than they looked wrong that particular day. I believe that we all have a very mild form of body dysmorphia, which for us, is a good thing. The proof is simple, we can look in a mirror and think we look wonderful, then see a photo even just days later, and see ourselves as everyone else saw us, the two images, just don’t match. Which is just one of the reasons, that I hate having my picture taken. Yes, I know I have some great pictures of me, but those few somehow captured what was in my mind, rather than what was in the mirror. Mirrors, normally, live in a space where they are bathed in bright sharp light, great photo’s, are blessed by great lighting. How we see ourselves, be it in our favourite mirror, in our heads, or in those pictures, always matters. It doesn’t matter if you are a teenager or an old fogy, we always know what we want to see, and for the majority of us, we always want to improve it.

I thought by now, that my arms would be getting just that little bit stronger and that I would be seeing the results in my upper body. It is now well over 2 months that I’ve using my wheelchair, even though I knew my arms had become severally weakened over the years, I thought, there would have been some improvement. There is a tiny one, but so tiny, it’s hardly worth admitting to. I’ve never done any research as to the effect of exercise on muscles that are being attacked by both PRMS and Fibro, I just based my expectations, on my own history. It’s about 8 years ago, that I for the first time used my wheelchair, back then, there was a marked change within the first month. Not so much in their strength, as I had always had good upper body strength, but they regained their tone. After years of carrying incredibly heavy record cases, plus having been keen on exercise of all sorts, I just stopped. A change in lifestyle, thanks to my work, meant all of it stopped. I gained half a stone in weight, and my body tone rapidly felt as though it went south. I had tried to do what I could, but I was by then sat on my backside on a phone for 8 hrs a day and walking the mile and a half there and back, just wasn’t enough. Then when my health went into rapid decline, the exercise levels fell off the planet, as my legs were badly affected very quickly. It had been 6 years since I had last been happy with my body, so seeing at least my upper body tone reappearing, was a joy. Not too surprisingly, when I sat in my chair again 2 months ago, I expected at least a small improvement. I know I am at the age where bingo wings begin, but I just hoped they might retract a little, but nothing.

So, OK, my house isn’t the size of a call center, but all of that taken as fact, how is it, that in a smaller space, I have managed to do what never happened at any time, ever, before, I have destroyed my hands. It appears as though life still finds ways to laugh at me, even when I’m locked away from it. No muscle improvement, no new strength, just hands who’s knuckles find it hysterically funny, to jump our of their sockets and cause indescribable pain, just because they now can. If that wasn’t enough, the tendons in my forearms have also found their voice. I had such high hopes when I asked Adam to bring my chair out of the cupboard and to give it a clean. I thought that I had found the answer to legs that collapsed and bingo wings in one. Well not just the wings, using a chair, tones right down to your stomach, they really are the perfect upper body workout that has ever been created. Yet here I am, with not the slightest sign of anything good happening at all. Since I became housebound, I have found it totally impossible to lose weight. I do so little, that it is just physically impossible to shift even a pound. Thanks to the pain that is throughout my body, conventional exercises are out of the window too. Even the physio’s won’t prescribe any form of exercise for me, as the balance between use and pain, is so fragile. I had my fingers crossed that removing the strain from my legs, would mean energy wise, I could shift to my arms, but with an extra positive twist. That twist is totally missing and it’s is so annoying.

For my entire diagnosed history, the effect that my health has taken on my looks, as been a roller coaster. The first few years, the weight piled on. Then I lost the ability to eat for nearly four years. I lost so much weight, that I landed up with a gastric tube as I weighed just 7 stone and I was on the verge of malnutrition. My clothes sizes had gone from my normal of a size 10-12, up to a size 16 and crashed to between a size 6 and an 8. I am talking UK sizes here, a size 6 is nothing, the literal skin and bones, with the emphasis on bones. Since I became housebound, up my weight went past my norm and on, it’s held at 18, which to me is huge, ever since. I hate what I see in the mirror as much as I hated the size 6. This is why I say, I think we all have a touch of body dysmorphia, as I usually didn’t see the 6 any more than I always see the 18, I’m still a 10. I know without a doubt if my health hadn’t stolen my body, that size 10-12 is just where I would be. I also know it would be toned as that is just me, I never let me body win, it did as I said or else. I know I am not alone when I say, that in some ways, the cruellest thing our health can do is to change our looks, and to remove the control we had over them. I may have all the time in the world now, but I can’t do a single exercise to help with what I see.

None of us want to be anything less than the person who lives in our heads. We want to measure up in every way, not just looks, but looks is what the world first judges us on. That’s why it’s extra cruel, we’re being judged on something we have no control what so ever on. So OK, if I were to make a list of the horrid things my health had done to me, my looks wouldn’t be the uppermost one, but it wouldn’t be far below it. It isn’t vanity, it’s about being a perfectly normal human being. Show me the person who doesn’t brush their hair and look in a mirror before they leave their home. There isn’t one. I can show you millions of people who say they can’t do anything about their weight, or the flabby muscles, their liers, they can. When I was 19, my weight ballooned to 18st 6lbs, I was pregnant and OK, over 11bls of that was the baby and a huge amount was proved to be fluid, but I still had 4 stone to lose. I lost all of it, and never, put it on again, we can normally all do it if we are determined. We are the real deal, that small number of people who really can’t do anything about it, and it’s just not fair. Just because we have an illness, or even a rather large collection of illnesses, it doesn’t mean we don’t want to be who we believe we should be. We can switch off that part of our brains, that keep telling us that we can be, or still are, that slim, well dressed and smartly turned out person we always were. In our heads, we’re still there. All those years of dieting, exercising and doing everything right, with the plan of long healthy life, were for nothing.

In my opinion, there are just too many brightly lit mirrors in this world, for us to be able to forget what the truth is. Sadly, it doesn’t matter how many times we tell ourselves, or others tell us, that it’s not our fault; that they love us regardless and always will; that we’re not the ones all those ads, and health warnings they roll out on the news about obesity, are aimed at; it’s always going to hurt, it’s always going to feel unfair. I can joke about it. I can even be positive about it. I can set my eyes to history and see what I want, but it doesn’t change reality. Nothing does.


Please read my blog from 2 years ago today – 30/11/2013 – Never alone

I made a wonderful discovery last night, nothing that will change the world but something that made me feel just that tiny bit more sane. Anyone who has a condition that effect their nerves will have had spells where their skin feels……

Facing painful facts

Being exhausted is a state of the now ‘normal’, one that you can’t escape or find a way to cure, it just is. There are so many things in my and all others with progressive illnesses lives that become so much part of our lives that we don’t really think about them any longer. Just as you expect to get up and wash and dress and be out of your house on the way to work in under an hour, I expect to get up put on my dressing gown and sit at my computer, never feeling that I could make the journey to the bottom of the stairs far less all the way into the city, that is now normal.

Yesterday when I took a shower and washed my hair, nothing much for most people, but the whole process of getting undressed from my pajamas and dressing gown, sitting in the shower washing myself including my hair, found me having to just sit there with the water keeping me warm for several minutes, as I was simply to exhausted to get out and dry myself. Adam has often offered to help me but somehow I think that for now would be harder for me to deal with. Facing that point when I have to start thinking about taking help is odd, I’m not there yet, but when I was sat there waiting to feel ready to simply dry myself made me realise that it may not be the too distant future before some help may be needed. That is a big step and as an adult not the kind of thing that you ever think you will need any help with ever. We all take it for granted that our lives will continue upwards from the point we can truly call ourselves adult. When we leave the family nest and take the responsibility for ourselves we just don’t see anything else ahead other than an upwards slope, better jobs, better wages, bigger homes, nicer clothes and new relationships. Then suddenly all that is reversed! Doing things that we learned to do as a child and finding like a child we actually need help and to relearn or find a different ways of doing things to achieve the same result is tough.

Progressions are tough, if I were to spend the rest of my life as I am now, well that wouldn’t be too bad, but to not know or have the slightest idea what or how it will happen, isn’t always easy. I know that my muscles are not what they were, that they won’t do the things I want them to and even at times something as simple as typing forces me to take rests, as they just can’t manage the next letter. My entire body is slowly loosing it’s strength, but for now I still manage without assistance, but the progression is showing me that the next step is getting closer every day, I just wish I knew when that step will arrive. How would you manage your life if suddenly on Monday morning you went for your shower and instead of the normal 10 minutes start to finish, you were still there in the shower after 20 minutes, unsure how you will dry yourself. It is a simple thing in life that may give you a glimpse in to what it is like, slowly every simple thing is becoming a slower and longer process, one day it will be so slow that I have no choice other than to accept the help on offer, how easy would that acceptance be for you?