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……

Wasting or withering

Yesterday I had my shower. Nothing that odd in that as like everyone else in the world, I do have to wash, but it was what I spotted while I was in there that actually shocked me. In the last couple of weeks since being once more up and about after my week in bed, I have felt weaker than I remember ever feeling before. At first I thought nothing of it, I just put it down to lack of food and slow recovery. I have after all been slowly losing my strength now for many years, not being able to lift thing at all that I used to lift with ease. Now two weeks in though I did expect to be seeing some improvements as it is behind my feeling as though I am fading at an increased speed. There were also odd things like I noticed that my knee high socks weren’t just pulling on with ease, but they seemed to have left over material once they reached there. I did check my weight once I was able to start eating again and yes, I did lose half a stone while lying in bed, not dramatic either, probably about right in comparison to my memories of illness, so nothing to worry about and I am sure it will return whether I want it to or not.

I was washing my left arm and was suddenly aware of how pathetic my forearm looked. It was all skinny with an odd shape to it as it didn’t seem to grow much in width from wrist to elbow and when I matched it to my right arm, they were completely different from each other. Even the quantities of skin and fat that I can grasp bear no resemblance, my left arm appears to withering. I continued to pay more attention to my body from there on and discovered there is a reason why my socks seem to have grown, both of my lower legs, but especially my left one have diminished in girth. I remember noticing a long time ago the problem with my arm, but back then it wasn’t as pronounced as it is now and once I was out of the shower and could look in the mirror, I saw the difference in my upper arms too. All the muscles that I have felt getting weaker are now clearly visible in their absence. The result is that I now have an even odder looking body than I thought I did as the fatty flab on my limbs that gets me down now has even less of a muscle structure to support it.

I know it must have been happening slowly, I just made the mistake of actually looking. I don’t normally look at myself at all if I can help it, it’s one of those things that is just too depressing these days. Once you have been unable to manage what even the most unfit healthy people do, your body changes in ways that you just don’t expect. We don’t expect it as none of us are capable of seeing ourselves in any other way than the image in our heads. I for one, hold myself at ages 30 – 35, odd I know most people chose somewhere in their teens, not me, 30 – 35 was without a doubt the time I was at my fittest, thinnest, strongest and closest I ever got to my perfect view of myself. In other words, the mirror image fitted exactly the image in my mind. Mirrors became bad news about two years into my being housebound. The weight had started to pile on as I had gone from very active to sitting doing nothing. Clearly exercise had been off my list of activities a long time before that, but it is surprising how fit just being in a manual wheelchair really keeps you. Especially if like me full speed was all too often the only speed that I went anywhere. I had several near misses in the office where I nearly plowed down different members of staff as they stepped into the corridor without looking to see if I was there hurtling towards them.

Once your eye catches something, well you can’t help but look closer. Stood in the shower it was bad enough to make the discovery that I am withering, but the more I looked the worse it seemed to get. Standing in front of the mirror was just plainly painful and I had to switch off my brain to it as the 32-year-old me was having a breakdown. Once I was dry and back through here, I took a tape measure and checked my arms. There is a difference of an inch and a half between my arms when measured just below my elbows. I have known for a while that my muscles have been slowly diminishing, everyday life has made that clear to me on many occasions. Seeing it like that is somehow different, even shocking. I don’t think any of us, regardless how long we have been ill actually think we will be able to see ourselves vanishing like that. I now have this horrid image of myself in the future of being nothing but bone, skin and fat, without any muscle there at all to support anything. It doesn’t matter how hard I have tried to lose weight in the last few years, the result is at best I can now hold it steady. Getting rid of fat without exercising is never something that happens with ease, even if I can reduce the flab, I still don’t have the muscle there to support even an once of it.

When I took the tape measure to my lower legs the difference was even bigger between left and right. I know because I used to be obsessive about my body shape that my left calf was always half an inch thinner, but nearly two inches is silly. I don’t actually understand that one, as to the best of my knowledge I haven’t taken up hopping around the house on my right leg. My arms make sense, I am right handed so I use my right arm all the time, even if it is just to lift a glass to my lips, it does get exercise, unlike my left that just lazes around. I did when I was first housebound to try and do some exercises, nothing amazing like weight lifting just the gentle stuff. I had two huge problems with it that led to me stopping totally. First it was the gentle bit, in my 30’s I exercised for several hours a day and there was nothing gentle about it. I would be pouring with sweat, out of breath and healthy exhausted by the end of it. Secondly, it was so boring! I had a sheet that had been given to my by the physios, all the exercises were either done sitting on a chair or lying on my bed and I just couldn’t get into them at all. They felt so pointless in comparison to what I had done in the past and so slow. I knew that they were all I could realistically manage, but that just made me feel pathetic, which at the time was worse than I could imagine the consequences of not doing them. I can’t blame anyone but myself for how I am now, if I had done as I was told and kept at it, well maybe now I wouldn’t have a body that all I want to do is hide.

It’s too late for me to even think about trying to exercise. I don’t have the energy that even the most gentle of the most gentle exercises I can think of. The best I can manage is to clench muscle groups whilst praying they don’t trigger a spasm. With so much of my body just looking for the excuse to do something horrid, just moving when I have to is often a risk. Only time will tell what my body has waiting for me, but I have to admit, I wish I had been strong enough to get past that feeling of being pathetic and persisted with the program.

Read my blog from 2 years ago today – 5/07/13 – The hardest conversation

Yesterday I went through what has to have been one of the most tough half hours in my life. We all have those milestones where we have no choice but things have to be said or things have to happen, but sitting with my daughter discussing exactly where I am now with my health and how that clock…….

Which way to weight

I gave in last night and I turned on the storage heater in the hall. I don’t remember ever putting it on this early in the year, but I really can’t deal with another day of being frozen out of reality. I know a lot of people wouldn’t count our home as having central heating, but I do, we have one storage heater and it is totally central, in between all the rooms we have and surprisingly to others but not me, it keeps the whole flat warm, well it does once it is at full power. I have had storage heaters in many of my homes over the years and I have learned that taking them up slowly to that level is the best thing to do, if you don’t want them to trip. If they do you have to wait for them to be cold, unscrew them from the wall, reset the trip system buried inside and start all over again, I very much doubt I have the strength to hold up a storage heater any longer, so slowly it is. It may be just on above zero, but it has already removed the worst of the chill, I don’t get why so many people don’t like them as other than a real fire with a back boiler, storage heaters would always be my next choice. I know some think them expensive, but I don’t find them so and with the price of gas rocketing, I think I have had the last laugh.

I woke this morning feeling a little bit brighter, despite having yet another disturbed night, I would at this minute give almost anything to have a week of sleep without out some part of me waking me at some stupid hour. Last night it was my legs that did the actual waking but once awake I knew I had to go to the loo before there was any chance of my sleeping again. Once up I decided to have a cigarette before returning for the rest of the night in bed, I had just reached the kitchen and lit my cigarette when I heard Adam wondering around in our rather small hallway, with nowhere to really wonder, I quickly realised he was searching for me. Rather than have him panicking I told him I was in the kitchen, as normal, I hadn’t turned on a single light. I avoid light like the plague, as I have learned that it makes it harder to return to sleep and I have I suppose like a blind person, learned my way around the house. It is actually even easier if you also keep your eyes shut, that way you don’t try to see and don’t invent the wrong directions. I have it now right down to the point that I can put my hand directly on the cigarette box in the kitchen, as well as the correct switches on the cooker to light it from. I do love the fact that he cares enough about me that he feels he has to make sure I am OK, even in the middle of the night, but I would far rather he stayed lying down and got his sleep at least. I know exactly why he checks, it’s because years ago I managed to knock myself out in the kitchen and I lay on the floor unconscious for what we think was about 3 hours. I must have made a noise I wasn’t aware off as I don’t always wake him, but there we were both in the kitchen at 5:30 in the morning. Once he was sure I was fine, he asked if it was OK for him to go and lie down again, he really is just too sweet at times, as if I was going to make him stand there while I finished filling my body with nicotine. From that point until the alarm sounded I slept fitfully, I was once more running through my mind conversations that will never happen. I don’t know why I do it and I just hope I am not the only person who does, otherwise I am about to admit I am a lunatic, but I spend a lot of time at night when not fully asleep, talking to my doctor, Adam, even people I haven’t seen for years, either reliving conversations as they were, or as they should have been, or in totally new conversations I haven’t yet had and might never, kind of dependant on how the rehearsal goes. There couldn’t be a more useless waste of time, but for some reason, I seem to have a need to do it and I can’t make myself not. This morning it was my doctor and it was basically all the things I said in yesterday’s post, just put in a fashion I hoped he would understand, not that he did as I didn’t land up any further forward than I was yesterday.

Once again this morning about half my porridge is still in its bowl, breakfast really does seem to be the hardest meal for me. It wasn’t until a couple of years ago that I started having breakfast, I never seem to really eat more than two meals a day, in fact for years it was only once a day. It was as I started to need to go to bed earlier and earlier, I was finding that having my dinner at 7 pm just wasn’t sitting right, so I switched my main meal to lunchtime and then slowly changed it from one big meal, into two smaller ones and it has worked well until recently. Maybe that is what I need to do now, just shift things around and see if that works, I guess if I am honest, I would be totally shocked if my life could just stay the same for any true length of time. I was about to write once again that I haven’t stood on the scales and decided instead to go and get the scales out of the cupboard, take them to the bathroom and stand on them. I usually would do that when I was having my shower, as it means not wasting energy, but I have been saying for weeks now that I need to stand on them and I haven’t. I was shocked to find that I have lost three-quarters of a stone. My weight hasn’t shifted anyway but upwards since I became housebound, so that is just totally amazing, but it puts me in a somewhat odd position of being delighted that I have lost weight, but now not understanding how it has happened. Considering that the quantity of food I have been eating has stayed more or less the same for several years, yes I have changed the items that make up my diet, but the calorie, fats and so on levels aren’t that much different, why I have suddenly lost weight doesn’t totally add up, as clearly, I am not doing any more than I ever do. The only thing I changed was from oatcakes to rice cakes and from hard cheese to Feta for my lunch, I was hoping that the change would be enough for something to change, even if it was to hold it steady. For about 8 weeks after I kept checking hoping that I might just loose even a pound ever couple of weeks, but I lost nothing, the weight was still creeping up by a pound a month. Right now though I am just delighted to know whatever the reason, I am just that little bit closer to the weight I used to be, just another 3 stone to go then. On the serious side, I will have to keep an eye on it, I had simply been putting it off as standing on them had just become a totally depressing process.

The longer you are ill, the more you avoid doing anything that is going to bring in a note of something that can’t be changed, weight is all too often one of them. All of us male or female get depressed when our weight rises and I was one of the lucky ones in a way, as I started out below weight before the doors finally shut. Three and three-quarters stone sounds like a huge weight gain, but I didn’t start eating more, in fact, I didn’t change anything. Immobility is one of the real dangers of chronic illness we never think about, it doesn’t matter how hard you try to diet, without any exercise because you can’t even walk, means you gain weight just eating the recommended daily food for an Adult. I just did a really quick calculation and although not 100% accurate, it does work out roughly at a pound a month, not much, but over 7 years it all adds up. I was actually surprised to find the calculation mirrored what I thought the gain was, as trust me, you get to a point where all you want to do is avoid scales of any type, followed by mirrors. With just a tiny amount of thought, we all know the dangers of weight gain, it alone opens up loads of new illnesses just waiting to strike, but so does malnutrition, there is no easy answers or perfect diets. I know as I said yesterday, I am eating far too little, but yesterday I believed that I was still gaining weight at a pound a month, but what are you supposed to do when you have no appetite.


Please read my blog from 2 years ago today – 31/10/12 – Positive learning

I’m tired today, nothing new there then. Joking aside I am really tired I have been since Saturday I seem to have these sleepy spells and have done for years. No matter how I try, I have never managed to work out what the trigger to them are, it isn’t as though I have been doing too much as I haven’t really done……