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……

Thinking

Last night I deliberately delayed taking my meds as I wanted to be able to locate the source points of my pain, it was a painful experiment but one I though was worth doing I was wrong. I have hoped that without the drugs interfering I would feel clearly what was happening rather than a numbed muddle. the result was a painful muddle. When you are on high levels of painkillers it is always difficult to know what is really happening, it could be that the center to the pain isn’t exactly where you think it is as you have no way of knowing what you are really feeling. It could be the same level through out an area or it could really be a heightened source that is numbed into the mess. Pain is a strange thing that when you live with it it becomes harder and harder to work out what is happening and why, removing the influence of painkillers has helped me in the past, but this time I had no luck, all I found was the pain was wider spread than I thought and it was a lot worse without the meds, so no surprise there then.

Yesterday afternoon I did a lot of reading as I said in yesterdays post I hadn’t realised that the pain I have in my pelvic could be a form of an MS hug, I had for the last few weeks be denying to myself that my MS could have anything to do with my pelvic pain, you see if I admitted that to myself then I was also admitting that I was going to have to live with it for the rest of my life. Lying to myself isn’t something new, I have done that before in the past and I should have learned from that but I didn’t, all I did was to upset myself with false hope that someone would be able to fix it, to stop it, to set me free from yet more pain in my life. Lying to myself is all part of denying things, I know that, but it is regardless of how long I have been ill, it is something I still do and I guess I always will.

My MS started when I was in my early 20’s and although I recognised the pain in my arms and legs were the same thing I had somehow separated the pains in my torso out as something else. Looking back I have had spells of pelvic pain but when they were at there worst before, nothing like they are now, I always put them down to my dancing, I used to dance every night when I was a DJ and I thought that as I wasn’t trained I was simply doing something the wrong way and causing pain, when I got a hernia from carrying all my cases and it appeared that time at the same point as a bout of pain, I had my confirmation in my mind. The bouts that followed where damage from that time, in my mind, but I now see I was wrong. I feel so silly, but I was somehow still holding onto the slight hope that I couldn’t attach MS to one thing. So here I am this morning, numb not to the pain but to life as I have lost the last little area to my pet monster, I have to admit it, MS now does truly have the whole of my body and I have no chance left of anything being free of it. I can’t find one muscle, one joint, one bone that MS and Fibro hasn’t possessed and all I have a head is more pain.

There is nothing above that I didn’t already know in my heart, as I said I knew I was lying to myself but there was a strange comfort in that lie. My future hasn’t changed nor has my past, what has changed in the past few days is simply how I think about it all. Strangely crushed but still with the same strong hope and belief that life is a wonderful thing to be enjoyed through what ever it brings, regardless of how often, for as long as that spark of enjoyment remains.

On going denial

One week on and my back is still hurting, I have to admit it is better than a week ago but I really did think it would have gone by now. Adam is back at work today so normality is once again restored in the home if not in me and yes I did make a start yesterday with my writing so I am no longer looking at a blank page if you like, I guess that unlike this blog I will do a lot of rewriting as this is daily I don’t really have the time to do that, I write from start to finish then check it over to ensure it will makes some sense to the reader, part of me thinks I should maintain that style, but it is hard to for some reason.

I have found myself thinking a lot about the post I wrote the other day about my decision that it was time for me to stop using the cooker without Adam in the house, I’m not going back on that decision but it has left me wondering how many other things will appear in time that I wouldn’t be able to do safely. We already had to change the bathroom from an over bath shower, to shower cabinet and I at the same time managed to get a raised toilet fitted so our bathroom which should be safe and easier in the years to come, although I know Adam would still rather I only use the shower when he is here, which I admit will probably have to happen eventually, but not yet. The two rooms that I guess will have to be adapted in time are out living room and bedroom, at least the bedroom will be a case of changing the bed for one that is easier for me to get in and out of. This week while my back has been sore I have had a great deal of trouble getting out of it, although I have managed with a slide and twist. It has opened my eyes though to the needs of the future as my muscles weaken all over I won’t be able to do this by myself, and I need to, as I sleep not only at night but in the afternoon as well. I hate the idea of having a practical bed rather than one that looks good and fits exactly into the space, any change in size would be a big issue as our bedroom isn’t exactly huge, there isn’t a spare piece of flat wall anywhere other than at the door as we have two wardrobes and two draw units that fill all the space to the centimeter. Change anything and something else would have to go and them what do we do with our belongings? In that respect I realise now that I should have done more work on the house when I was still working and had the money to, but no one expects to be made redundant and unable to find another job.

Like so many other people these days we would need a lottery win to be able to do everything that would make our home a better layout for going forward, as yes there is probably a few changes needed in the living room as well. I suppose I didn’t do it as like everyone else there is a denial that goes on for ever, I still find it hard to get my head round things like the cooker, I had the idea in the back of my head but my expected dates for any of them to be still years away. So how soon could all the other ‘one day in the future’ items actually arrive? It is easy to say ‘I wish I had’, but it really was bad planning and huge denial on my part. If I could go back and sort out all these things, well I would, and I would now have a home that I will be happy with how it looks going forward and would also be adaptable. Anyone out there heading down the same path please think and act now while you can, not what I did, blindly head onwards with blinkers on to the future.

I suppose that denial will continue regardless what I do or what I try to do, and the reason is easy to explain, no one wants to picture themselves becoming more and more pathetic and frail, but that is my future and I don’t deny that, I just deny the timeline it wants to take, as it isn’t the way I want it.