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……

Every solution breeds a problem

For the first time since I sat in my wheelchair several weeks ago, I actually abandoned it yesterday. I had just been back and forward to the kitchen three times, the first planned, the second two, to fetch what I had forgotten. On the final time, I climbed out of my chair and was about to sit back down here. My eyes scanned the desk as I was lowering myself with the aid of my desk, when I realised, I hadn’t been to the fridge to pick up a drink. I gave up on the lowering and slammed down on my chair, my head hanging low and so angry, I wanted to scream. Once more, I was going to have to fight with my arms, which had complained through every turn of my wheels, on my last trip. Here I was, with no other option, but to return to the kitchen and to go through all of that again, but, I did have an option, I could walk. In some ways, I am really surprised that I haven’t taken that option before. I still have legs, yes their weak and they are unreliable, but they are still here. So I did it. I walked. Through every step, I could feel myself shaking from my toes, right up to my hands, but it was still faster and it didn’t hurt my arms. I had walked there and back with my hand dragging across the wall and grasping at anything, I thought, would hold my weight if my legs failed. I have to admit, that the relief when I was once more sat here, was huge. All I could hear going around and around in my head, were questions, “What would I have said to Adam if I had fallen?”, “How would I explain the fact I had left my chair and stupidly walked all that way?”, “What on earth had I been thinking?”

It isn’t something I am going to do again in a hurry. Somehow, I think I actually needed to do it. Not just to fetch the drink, but to remind me, why I am now once again on wheels. Changing your life, from ambulatory to assisted by a wheelchair, is a huge thing to do. The idea that you just sit down and totally forget, that your legs are even there, would be madness. I can, as far as the physical mechanism of walking goes, still actually walk. I can stand up, take a few steps in safe areas, but the whole idea that it is safe to do so over greater distances, would be the greatest form of insanity, I could lay claim to. Trust me, life in a wheelchair may be safer, but it is a million miles from easier, faster or even enjoyable. At first, it was all a challenge. Dealing with all the sharp turns and obstacles that seemed to actually jump out in front of me from nowhere. I learned, I grew more confident and slowly, I became used to it. At about that very point, my arms and hands stopped just being annoyed at me and took up a stance, of pure objection to the whole thing. Mornings have usually been not to bad, but as the day progresses, there is less and less cooperation. By the evening, it isn’t just when I am moving around, but when I am doing totally nothing, I am in pain from my neck, across my shoulders, and down into my fingertips. Worst of all, it is no longer just my thumbs that are dislocating, I now have three more fingers, that have discovered the same trick. None of them jump out totally, but enough, trust me to cause extreme pain and to have me grabbing and pushing them back to a normal location as fast as possible. If anyone has the cure or even something that would help, please tell me it. It so often feels now, that what seems to be the answer for one problem, turns out to be just another problem. Life has reached a point where nothing is a simple straight forward process and I honestly, can’t see it getting any simpler, anytime soon.

It isn’t just pain that my chair is causing. I have issues at night because I can’t manage to move quickly when I am half asleep, without crashing into things, usually causing myself more damage than anything in the house. I need speed, because I normally wake, out of the need to get to the loo. No, I don’t want a commode in the bedroom, not for a long time to come. My chair won’t fit into the far end of the bathroom. There simply isn’t enough space, although that wasn’t a problem two months ago, it is now. So, I am now considering grab bars and rails, to assist me. A step, I’ve resisted for so long, that it somehow feel ironic, that I’m thinking about them now, thanks to another aid. Again, thanks to my chair, having a shower seems like a much more complex and annoying process, than ever before. Clearly, standing in the middle of the bathroom, to get dry is just too dangerous. If my legs won’t hold me when walking, or even just standing for a short while, the danger when twisting, standing on one foot, or any of the other odd positions, we stand in when getting dry, is pure danger. Bringing my chair in with me, yes, it means I can sit down, but because that means it has to be brought in backwards, once in, I can’t get to the loo. It also makes getting dry, one, huge problem. The towel catches on everything, wheels, brakes, armrests, footrest, you name it, it will catch. No matter what system I use, I always seem to land up with damp spots, that I don’t find until I am trying to get dressed. I could ask Adam to help me, but that holds two problems. First, I don’t want Adam to be drying me and second, it’s another idea that I have fought against for years.

My wheelchair may well have removed the danger of my landing on the floor, but it has brought with it, a range, far bigger than just those I have listed, of problems that I now have to fix. If, I hadn’t stood up yesterday; walking out of total frustration; with the result that it had; quite honestly; at this point, I would be thinking of returning it to its cupboard. I need it, but it’s not making life easier, in any way I can think of. Actually, I have to take that back. I know that all I have to do is read back to the posts I wrote when I first set off on my newest form of life. It did have a huge positive impact, and I have to remember that. It isn’t so much the chair, it is life has so much clutter attached and moving in a rather large and new piece, isn’t going to be easy for anyone. If I am to tell the truth, none of us want our lives altered, by anyone or anything. Life, no matter how scary, is most enjoyable when we keep it simple. We don’t like change, and we definitely don’t like change that means, even more change, is required. I know myself, that it has more to do with attitude and desire, than reality. We see problems, that aren’t really problems at all, they’re just more change and that’s the real issue. If I can find grab rails that don’t scream hospital at me, well I could live with them. The rest is much harder, but solutions must be there somewhere, ones that aren’t just going to lead to even more problems once in place. The real problem is, is it doesn’t matter how far you try to plan into the future, when your fighting against an illness, that just doesn’t stand still. As I said, two months ago, rails weren’t required, they’re need though, is getting closer. Ouch! that has just put something into my head, something I hadn’t thought of, until this very second. Are all those problems, that I’m blaming on my chair, actually just new problems, ones that would have appeared, with or without it? Can I scream now, please, pretty please?

It’s a horrid thought that new problems will appear every two months, maybe, I’ve just reached that phase. Could my health really be moving that fast? Is that really why, I am feeling suffocated by problems? When I think about it, it kind of makes sense, but so did my first line of attack. I always knew that as time went on, that I was going to be doing more and more problem solving, just to make life livable. If I am going to remain independent, I know that life will have to change, systems revised and problems solved. Stupidly, I started putting them off. My brain is degenerating just as my body is. Much of what I am facing now, where problems that I always knew, would rear their heads, but I was doing the normal human act, of putting it off. Once, no problem phased me, in fact, I embraced them and loved them. There was nothing like a new challenge, just to keep you going. That, though, is now my main problem, being human, it has forced me into a world where mentally I am playing catch up, instead of being one step ahead, as I once always was.


Please read my blog from 2 years ago today – 18/11/2013 – Caught in nowhere to go

If I hadn’t spent so many years living with pain I think that at some point over the weekend I would have been at the local A&E department. My diaphragm is still giving me no peace, but it has made me realise just how…..

So what if I’m nuts

If I didn’t know better, I would now be dialling 999 and praying that they arrived promptly. The right side of my face has just gone numb and feels as though it is hanging there, just as they show when describing a stroke. I know it’s not because it happens all the time. I used to run to the mirror and check, so convincing is the sensation that even if I was in bed, I would get up. Nerves can be very convincing when they decided to put on a show and trust me when I say, feeling as though half your face dead and falling off, is pretty horrific. It’s just one of an array of sensations that I have learned to live with, this one though is somehow the worst one. I suppose there is nothing in this world that is more our identity than our faces are, so this attack, as that is what it is, this attack, is a direct attack on me.

It can be very hard thing to accept that everything that is happening to you is actually being caused by you. Autoimmune conditions have to be the most difficult things to fully accept. Illness until you are diagnosed with an autoimmune condition is caused by some evil little bug or virus. Something that you can blame, give a face to and even a name. It’s not you, it’s this thing that is attacking you. Then suddenly this new word appears in your life, “Autoimmune”. Your body is attacking itself and it can’t be stopped. It doesn’t make any sense, how can your own body be putting itself through all this pain and be slowly destroying itself. You can’t give it a face, as it’s your face. You can’t give it a name, as it’s your name. Even logic says that you can’t hate it, as you are then hating yourself. “You have an autoimmune condition called Fibromyalgia”. That was the first time I heard either of those things applied to me. It’s one of those devastating second in life when the world stops and you sit there with everything echoing in your head. No matter how hard you try to listen to the doctor, all you really remember are those few words, the rest seems somewhat unimportant. The doctor could have diagnosed my MS at the same time, but she didn’t think that a CAT or MRI was needed. Fortunately, an ENT specialist that I saw a few months later thought it was important. It was another year later I found myself being told I had PRMS. It actually didn’t hit me as hard when the words were said, by that point I was ready for it, not the Progressive Relapsing bit, I was expecting the normal RR. It sounds stupid now, but it wasn’t until a few years later that I truly began to understand what my future held for me. It was also about that time that I fully accepted that my body could really be causing all of it.

I related all of that for a reason. Acceptance of your health isn’t a smooth straight forward thing. Being diagnosed is the easy bit, accepting and understanding can take years. I think we go into self-preservation mode. Somehow if we accept it, all of the horrid things that we have read will actually be real. It is something that isn’t just some horrid mistake and one that is going to be spotted during one of their annual catch up. Acceptance is slow, incredibly painful and totally essential. It happens in phases, the first phase is actually a false one, it’s not acceptance at all. I spent a few days at home feeling sorry for myself, just sitting there crying and crying until I couldn’t any more. I thought that I understood what was happening, that I was accepting, but I wasn’t, I was mourning. I was mourning a list of things, including the end of my fight to find out what was wrong. That phase of my life was over and gone, the fact that had gone from just one devastatingly crippling condition that was going to steal my body and my mind, to two and this one was going to take over my life. I thought the last tear was acceptance, but it wasn’t, it was coming to terms with it, realising I had to get on with life and putting the tears behind me. Over the next months, there were more tears, more grieving for what I had lost although none of us really know that, as we can’t know what life would have been, but we mourn it.

Acceptance is an incredibly slow process. It comes when your not looking for it. It grows through all the things that you discover haven’t been stolen from you overnight. It’s in all the new things you still learn and achieve despite this autoimmune monster. It isn’t a flash of lightning, it’s a gentle growing feeling and as it grows as you learn that life goes on, you adjust to your new title. I know the outside world thought I had accepted it long before I had, but that was because I was being me. Bravado was always part of my life. I always went into things full heartedly on the surface, but shaking and terrified inside. My appearance in this situation was no different. I was upfront, happy to tell anyone anything they wanted to know. I hid nothing from anyone and smiled as I spoke, even on days when I was dying inside. I can’t tell you the exact day that the two actually were the same thing. I don’t remember when I truthfully felt what I was saying, that the ‘I can do this with my eyes shut’, met head to head, with ‘I am happy, this is my life and I’m living it’. But they did.

I know many believe wrongly, that acceptance has to happen quickly and it’s the only way to get on with your life. There is no right or wrong time that acceptance will appear, but it does appear and it can’t be forced. Once you do accept, once you truly say this is what life has laid out for me and I am content to live with it, life changes. You can’t fight chronic illness. You can’t defeat it by being positive. Neither work as both are just showcases for the outside world, not healing on the inside. No one is given a diagnosis of something that is going to destroy them one day and next be smiling about it unless they have a screw loose. For me I know it was sometime around the point that I was given chemo to knock out my immune system so my body could heal, that I truly found my acceptance. That was about 4 years after my diagnosis. I found an odd positivity about what was happening to me, I might be dying slowly, but I wasn’t dying yet, I had too much still to do. If I had to do it full of radioactive chemicals and from a wheelchair, so what. It was like those chemicals were my wake up call. They don’t give you stuff like that unless you really need it and if they were going to give me a chance at living longer, I wasn’t going to let them down. My acceptance was complete.

I believe totally that we all find that point, somewhere along the path of illness is that wake-up marker and it doesn’t just happen once. They are there all the way through, there to remind us that life is still ours and we are still have living to do. It doesn’t matter how black and bleak your prognosis, once you have that acceptance, well nothing can hold you down for long. I am doing this to myself, not willingly, but because I was unlucky to have a screwed up autoimmune system. Not fair, but a fact. Even now when I know I am slipping once more, I can accept it. Right now, it’s not with an fully open heart, but with one open enough, because I have the knowledge that I will find it anew as I always have in the last few years. Once found, you never truly loose it, it just hides every now and then. Until it happens, you can’t see it, you can’t believe that it will ever happen to you. I felt the same, I thought people who were positive about their lives when they so clearly were a mess, well they were nuts. I am now and have been for several years, happy to be officially nuts.

Please read my blog from 2 years ago – 29/07/2013 – The start of a thought…..

Yesterday brought me on blessing that I had hoped would be worth the money I spent on it but like many things I had to wait and see when they were eventually arrived, confused? My new glasses arrived, the ones especially for sitting here typing! I had been a little….

Perfectly wrong

I have a plan for today, to do some baking. Yes, I did type that correctly, I am going to do some baking. I actually did some last week as a test for the Psyllium and discovered that a very simple soda style bread worked well, but needed something to zing up the flavour. So today I am going to make a savoury one with onion, cheese and nuts and a more sweet one with the only sweet things I really enjoy, pineapple, coconut and ginger. The additions aren’t just for flavour, they are also so I can get a better amount of nutrition out of them. With them being so filling, they have to be a meal replacement and not an addition to my daily food, I just can’t manage both. The good thing is that soda bread works and although I am not going to make it today, I also bought some yeast so I can try some real bread at some point next week. The good thing about bread is, there isn’t really any work to it, other than the point that it needs to be kneaded and I learned long ago that that doesn’t have to take hours, a couple of minutes is enough.

It feels really odd doing something as normal as baking, but I did enjoy it last week. Yes, like everything else it drains the energy out of me, but I can minimise that by simply sitting on my perching stool rather than standing. But that is the point, like everything else, it drains my energy, my energy is being drained just doing this, so what is the real difference, two or three extra trips to the kitchen, that’s all. If I manage it into my day, the difference is limited. I had more or less given up on having anything “normal” in my life ever again. I suppose because until this, my idea of baking always included a high degree of decoration and presentation, bread doesn’t really need any, especially when it is just for me. It is really hard to get my head around doing such a thing, but being forced into it has been a revelation. I had given up on doing so many things simply because I couldn’t bring them up to my high standards. It was getting expensive as I threw out so many things just because they weren’t the way I wanted them to be. When I made the soda bread last week, well to be honest if it hadn’t been just for me, I probably would have thrown it out too. To look at, it was this dark brown mass just sat there, not looking appetising in any way, but Psyllium seem to do that. The taste was more than just OK and the proof is the fact that I have now eaten it all. If I had made it with the idea that it was for both of us, well Adam would never have been given the chance to even see it, far less taste it. I have been left wondering what other things I might manage or could have done for longer if I had approached them without my perfectionist’s head on.

Our personalities are such a huge part of our lives, so it’s no surprise that it plays a huge role in our health as well. I don’t need anyone to tell me that the fact that I am by nature an optimist carries me through a lot. I always saw my perfectionist self as a positive force on my life, it drove me hard to make things as good as I could, whether it was in my personal life or at work. When I was still healthy enough to be part of the outside world, for me being a perfectionist was more than positive as people praised me for almost everything that I did. Human nature means that I thrived on it, every time I saw that other appreciated whatever it was I had done, reinforced that going that extra mile was a good thing and pushed me to do it more and more. I could see then and now, nothing negative in that in any way, but when my abilities started to fail me, well it did the opposite. It was hard enough that the praise didn’t flow as I was used to, but then it got even worse, slowly the faults started to appear and no matter how hard I tried they kept happening. Even worse than that, was the fact that my brain was failing me so badly, that I wasn’t even seeing them before others did. This perfectionist spent the last year of my working life in the office in more or less a constant start of frustration and fear of what might happen next. On that level becoming housebound was a blessing. Outside of the office environment, I could put in the hours without interruption and my work improved again, but everything else in my life was failing. Work had to come first and I didn’t have the mental or physical ability to make anything else perfect anymore and I couldn’t deal with that, so I stopped trying.

It has taken me eight years to realise that I threw away so much when I turned my back on everything just to be able to work. I’m not saying that most of it might not have had to go by now, but just that simple act of baking one loaf of soda bread made me realise that I do still have some skills that not being perfect at, doesn’t mean they can’t be done and enjoyed. Being ill was a viable reason to not even take the chance of getting something wrong, the perfectionist was still at work, using the perfect excuse. I suspect that we have all done it at some point, used our illness as an escape reason for ourselves not doing something. I have grown so used to the idea that my body can’t do anything, simply because it can’t do most things, I had missed there were things in between the two. I know how I got here but only by chance, I almost bet there are millions of routes to this point and most of us will find one of them. Maybe, ill or not, we all sometimes need a good kick up the backside and to remember that being alive is more than just breathing. All of us, have the ability, able-bodied or not, to do more than we do and I don’t have the slightest doubt about that, some of us have just forgotten how to try.

I won’t be running a marathon anytime soon, or creating and making a totally new look for myself, but I am going to at least try to use some of those skills that are sleeping inside me. I know I have to pace myself and be sensible about what I try to do but as long as I go into something without having some grand design in my head that I would have struggled to complete years ago, I am sure I can manage somethings. Cutting things out of our lives is too easy, it’s too easy to remember the pain or exhaustion something caused before, it doesn’t mean it will happen this time and as long as I enjoy it, does it really matter if the result isn’t perfect.

Read my blog from 2 years ago today – 2/06/13 – What’s best to say

I expect that anyone who has a chronic illness will have well-meaning friends and family who come across articles online which claim to be either to have the cause for your illness or a cure for it. I know they send them for all the right reasons and in the hope they have discovered something that might change your life for the better, but then you suddenly find yourself with a huge problem. How do you……

Paint the full picture

I found myself doing something yesterday that I don’t do a lot, looking in the mirror, no not just long enough to put on my face cream, I mean really looking in the mirror. I have avoided it now for many years, well anyone who is physically limited in what they can do and of course aging, mirror aren’t exactly our best friends, something that after yesterday, I feel even more strongly about. It actually really surprised me when I found myself standing there really looking, I had just got out of the shower and I was stood in the biggest space in the bathroom as it is the easiest to get dried in, when I looked round to my side and there I was. It seems like just a few days ago that I didn’t mind in the slightest standing there naked, I used to be proud of how well I had survived physically into my late 40’s without time taking too much of a toll on me, now in my 50’s and all that good has been totally undone. You don’t realise until it is too late just what any chronic illness does to you other than just the effects of the condition you are diagnosed with or just how fit pushing yourself around in a wheelchair actually keeps you. When I closed the front door for the last time I still had a flat stomach and a good waistline, not to mention firm arms and thighs, now every part of me is covered in a layer of flab, flab that is there despite eating virtually nothing. When you spend more than half your day asleep and the rest just sitting every muscle you had just turns soft and can’t hold anything in place and I do mean anything. In just 8 years, I feel as though I have aged 20, but the worst bit of it isn’t what I saw but what I felt, for the first time in ages I felt really bad about myself, so my ban on “looking” in the mirror is well back in place.

When you have spent your life being physically active, refusing to sit for more than few minutes at a time, disability is a hugely difficult thing to accept. I was the type of person who never shied away from doing anything physical, I never even learned to drive, I had a perfectly good pair of legs that even when I lived in the countryside, took me to the nearest town to do the shopping and back, even with two kids in tow. There are people you can look at and see in your mind clearly what they will look like as they age and I never saw me like this. My future had me remaining slim and fit right into my latter years, there was no reason for me to ever be overweight and flabby as I still loved to walk right up until it was too painful and too dangerous for me to do so. When you become too ill to live the average life, your weight and body shape do somewhat disappear off the edge of your mind, but even in those early days I saw no reason why the “me” of later years would be anything less than the “me” I had always imagined. Weight gain and flab weren’t even mentioned in any of the sites that I visited desperate to get a fuller picture of my new future, none of them spoke of anything other than the standard symptoms and the standard results of them. Your mind doesn’t go along the logical lines of lack of mobility equals weight gain and flab, your mind still holds on to the glossier pictures, the one that show happy slim people talking positively all the time about their lives. I did have slight blip, where my weight did climb a little for about a year, it was at the point where I had given into the walking stick and I had had to admit that life had to slow down and I with it, but within weeks of being in my wheelchair the weight started to fall off. I had freedom, freedom to move faster than even those around me, I went nearly everywhere at full speed. A manual wheelchair is a total body workout, you don’t realise it at first but you use every muscle right down to your feet, as you lean back and forwards, turn tight corners at speed and enjoy being able to travel where you want again. I went overnight from athletic to pathetic, well that might be a little strong, but you get the picture and as the years have passed the pounds slip on and without any exercise of any type now possible, there is nothing left that I can do about it.

I find it kind of ironic as I really was a person who did everything I could, accept giving up smoking to be a fit and slender person, yet here I am like the majority of the western world, anything but either. I get angry when on the TV I hear all those reporters going on about obesity in the UK and how people just need to lose weight and get fit, I always want to shout loudly back at them this isn’t my fault and I’m not just looking for an excuse, there really isn’t a single thing left I can do. I know that when I check my BMI I am not obese, but I am overweight by about 10lbs, which now makes me 22lbs more than I ever weighed before, on my personal scale that makes me huge. Diet now makes not the slightest bit of difference, I have cut back and cut back until I was nearly eating nothing and nothing changed, without exercise I can’t lose this weight. On the good side though, I have held it nearly steady for a while now, plus I am convinced that the problems I have with my bowels isn’t helping me in the slightest. What I see appears worse than it really is, I know that it looks that way as I no longer have the muscle to hold it all in place and that is why I look like a saggy baggy series of balloons, loosely held together. What makes it even worse though, is what it is doing to my health, especially my COPD as breathing is never helped when you are carrying more weight than needed and in time it is going to make everything else worse as well. I don’t know if it would really have made any difference, but I can’t help thinking that if someone had taken me in hand years ago and shown me what could be and is now my future that maybe, just maybe I might have done more than I did when I could, now it’s too late.

All the way through my blog I have listed thing that no one tells you when you become ill, well this is another one of them. I honestly do believe that it is time they gave us all the full picture and armed us with the training on how to stay as fit as we can for as long as we can. If I had done some form of exercise, even the most gentle when my muscles could still take it, I might still have enough none wasted muscle to actually exercising a little now. Humans have this horrid ability to give up when everything is taken away from us, when my mobility in the outside world was taken away from me, I admit freely that I gave up, I sat back with the well what does it matter now attitude. When your body hurts and your energy has gone, you see no point in fighting anything, but I admit that there was a time when I could have lain on my bed and done gentle lifts, muscle tightening and stretches, they might have made a difference, even slightly. The whole idea of even that type of exercise now is out of the question, my body firstly couldn’t do it and secondly would make me pay big style for every muscle used. No matter how intelligent a person is, if we aren’t given the full information about every possibility that lies ahead of us, none of us can do the right things and none of us will ever be able to keep ourselves as well as possible, for as long as possible.

Read my blog from 2 years ago today – 24/03/13 – The end of the day (prt. 2) >

I think I made a mistake starting this as my body last night decided to give a full blast reminder just in case I missed anything. I was a little late yesterday going for my nap and I didn’t get up until 5pm, feeling very much as I did when I went to sleep. Saturday evenings have been really bad for programs on TV so I was happy to be sat here until after 7pm. I usually find I suspect like most people that when I am busy, I really don’t notice things in the same….