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……

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….

A rather smelly nudist

I am on my own today, Adam isn’t back at work, that isn’t until Monday but as today is Friday, he is at college. I am really pleased that he is doing something that hopefully will give him a better job eventually, like many people including myself, who left school without any silly bits of paper saying we have a brain, he has felt held back by it, getting this HNC will make the world of difference to him. For me it wasn’t getting a qualification that made my working life change, it was me realising that if I wanted something I had to show I could do it and if that meant I had to work every hour that god gave, then that was what I did, yes even without pay. Every time I have ever wanted something from life, I have just gone for it and not only grasped with both hands any rope that was there to help me along, but I also never let myself believe that anything was impossible. I got rather good at bashing down doors and making the world let me in and getting what I wanted, but it wasn’t until I reread my post from yesterday, that I realised that I was laying out another battle, one that clearly has been annoying me for a long time. I also realised that for the first time, I was looking at something that I haven’t the slightest idea what to do about it. How do you bash down doors when you can’t even get to them?

I have spoken many times now that part of my writing and being online was originally to raise the profile of people living with chronic illness, not just MS, but any of the myriad of conditions that millions have to live with and how they all impact on our lives. Like many other things in life, I have found myself preaching to the converted a lot of the time, but I also know that I have made some who have never thought about it at all, what reality can actually really be like. It doesn’t matter what issue it is that I write about on any given day, there is hardly a day where someone doesn’t chirp up on Twitter to say either, “I know this, because I live with it too & I thought I was alone” or “Thank you, I now understand my Mother/friend/partner” or “I never knew, thank you writing this”, but how do you pull those sides together and keep them there working together to make things clearer and better for all, when all your strength is taken just writing about it. I so often feel that I am doing the one thing I have hated all my life, talking without doing, but I can’t change the world on my own and I totally don’t know how to from my living room. All I can do is to keep chipping away and just hope that one day the right person will read what I have written and will be able to start bashing doors on my behalf and shoving my words in their faces until the people with power have to change things. Nothing in life is simple, when you are housebound, trust me they became a thousand times harder for a thousand different reasons and if you don’t believe me, keep reading.

I woke this morning with pain in all the normal places and a great desire to get up, get dressed and go for a pee, it was as I was getting dressed, that I really began to notice all truly all the different point of pain. There is one act in life that is always going to be my least favourite, getting dressed or undressed. When you are fit and healthy, you really don’t think about all the different positions we have to get our bodies into to, to just cover it with a layer of material and none of it is easy to achieve when there is pain everywhere. I also know that any time I mention getting dressed that Adam will offer to help me, honestly, well I know we have never tried it, but I don’t have the slightest doubt in saying this, that would make things worse. Just like getting dry after a shower, I know where my pain is at that very second, which means I know the position and the pressure and speed that I can achieve without making things worse. I used to think that washing and dressing was something that I wouldn’t want assistance with, simply because it was somehow too personal, but it isn’t that at all, well maybe very slightly, but it is far more the pain issue that keeps me refusing his help. When I look at all the things that my health has a head of me still waiting to happen, this is an issue that I can’t see a way around, but one that we all have to do, unless you intend to spend your later years as a rather smelly nudist. It doesn’t matter how I look at it, or what clothing there are out there, we all have two arms and two legs that will have to be manipulated so that they can be covered up and we all have to be able to bend and stretch our bodies so said arms and legs can be clothed or washed and dried. What will work one day, will probably not work the next, in fact, as anyone with a condition anything like my PRMS and Fibro will vouch for, how you got them on, isn’t always going to work in reverse when it comes to taking them off again. I gave up buttons, popper, hooks and eyes and zips along time ago, everything I wear has either got a large amount of lycra in it and/or is so big and soft that it should prove to be no problem, but even all that isn’t enough.

It’s another one of those things that seems so wrong and I never understood until I found myself where I am right now, just why so many people seem to wear such odd clothing, especially a lot of people who are in wheelchairs. When I was in my manual chair, I was still lucky enough that my PRMS was spending most of its energy working at either end of my body, yes I could still dress for the office, but I also made a point of wearing the same outrageous clothes I always loved, thighboots, mini skirts and skimpy tops the rest of the time. Now that I have pain everywhere, well I now understand that fashion, likes and dislikes all go out of the window, comfort and ease of access are all that matter. If I couldn’t understand such a small thing when I already lived with a chronic illness, well what chance do those who don’t, it’s a little thing, but if I didn’t get it, what chance do we have in a world where people judge us on our appearance. I hate to think what someone who was interviewing me for a job would make of me know, well I don’t have to think, I know I wouldn’t get a job no matter what it was, looking as I do now. It is another of those things that unless people know, the way we are treated will always be wrong and not because of anything we have actually done, other than to make the best out of a bad lot.

Unless I won the lottery, when I could employ a designer to work on making me a wardrobe of clothes that not only could I put on with ease and I actually liked, I know there is no chance of ever feeling part of the world, outrageous or not. Clothes define us more than we like to think, for 6 years I haven’t worn a single item that has made me feel good about myself, it’s part of the reason I have an aversion to mirrors and I know without a doubt there are millions in a similar position, many still out and about in a world that laughs at them, just because of how they look and with any comprehension of the truth, another wrong that needs to be made right.

Read my blog from 2 years ago today – 13/03/13 – Now or Later >

The start of another day, and it all seemed just all to normal. I have said repeatedly that I hate that word as it normally refers to what is average for the population as a whole, but when it comes to my health at any given point in time, there is no other word to use. Today is normal, not your normal, I will agree but that is the problem, we all too easily…..

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……