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…….

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) > http://bit.ly/11xTobx

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….

It’s going to far

I almost made it through to a full nights sleep, 7:00 am and I was woken by a strong spasm in my ribs and once awake I knew I had to go to the loo. Why is it that the second you wake you are aware of your bladder, yet you know perfectly well if you hadn’t woken, you would have slept on totally unaware? Apart from that the first thing I noticed when I put a toe outside my duvet was the blessed feeling that I wasn’t stepping straight into a blast freezer, having said that now I am beginning to find the house just that bit colder than I would like, as always I felt it first in my hands, from where it slowly spread. I can’t say what has aggravated them but I am getting no peace this morning from my intercostal muscles, they seem to be set into a long train of spasms from which I expect over the next couple of days to see the bruising darken again. I have been keeping an eye on all the bruises around my ribcage, well mainly on my right side the ones on my left side seem to be further apart, but what I have noticed is they aren’t quite as permanent as I thought. The don’t ever go away but they do fluctuate in colour, becoming paler when things are quiet and darkening up within 36 hours of the muscles attacking me again. I am guessing a bit here, but to me, that means the damage is deeper inside than I thought as the blood that makes up the bruise is taking so long to reach the surface of my skin. I was in the kitchen making my breakfast when one of those spasms hit, this time very much across the base of my sternum, there was one point that seemed more painful than the rest so I put my finger on it so that I could walk to the mirror to see if there was anything there to see, but as soon as I touched it, I felt a small but hard lump, protruding from the edge of the first rib below my sternum. It felt no bigger than the surface area of the index finger that was above it, but it was a lump and it was caught between muscle and bone. There was nothing to see and as the muscles relaxed, it vanished, no matter how far I pushed my fingers into my stomach and around my ribs, I could find nothing.

If it wasn’t for the fact that I am good at odd lumps, some that even my GP has sent me to the hospital for investigation, only for them to vanish before I got there, I might be worrying, I’m not in the slightest. I started finding Ganglion cysts, so many years ago that I can’t actually place their start, at first, they were where they are most common, in my hands around the joints and once the doctor told me what they were I stopped going to see him about them. In the olden days, they used to hit them with the family bible, not because they thought they were evil, but because the family bible was big, heavy and available. They are nothing but fluid filled sacks that grow on tendons. The last one I went to the doctor about was in my neck, a more unusual position, but I now have several, none visible but clearly there to the lightest touch. What I found this morning is identical and as I can only find it when the muscles push it into range, mirrors a couple of others. I guess the funniest lump I ever found actually managed to disappear right under my doctor’s hand, he was checking it for size and so on, when it just vanished, he concluded it had to have been some kind of blockage as it was in my breast, all I was thinking was thank god it waited until then, as I would have felt so stupid saying I had a lump that wasn’t there to be found.

I find it actually quite funny these days when I think back on the things that I have, like millions of others, turned up at their GP’s surgery convinced that we were dying because of, when in fact, all those aches and pains, the spasm, the loss of balance and everything else that I stopped going to see them about, is actually the thing that probably will kill me. Well unless my body has some other trick lined up that I am yet not aware of. I don’t really now understand where our fear of cancer has come from, if you look at the facts there are a million of other things that will be far more likely to end our lives before cancer gets a chance to even have a look in. I can only guess it started because it was suddenly in the public eye, although it’s documented back to the ancient Egyptians, I doubt it was a commonly used word until the last century. If I had to make a stab at it, I would say it was when they linked smoking to cancer and then they linked almost everything else that most of us have probably been in contact with at some point in a normal life. If there was one thing that I wish doctors would stop doing, is trying to scare us to death, we die quickly enough without their stories and that they actually focused on the real killers, like heart attacks and strokes, still the biggest killers worldwide.

Someone said to me the other day that they had found it really hard to find a doctor who was interested in treating the ill, rather than being totally focused on this modern fitness drive. On one level, that of a person who is ill and needs their help, I couldn’t agree more, doctors do now seem to be totally focused on prevention and not on treatment. That is wonderful for those who are still well and I really hope they never become ill, but we, the sick are still here and all the fitness drives in the world won’t make us well. What I keep hearing on TV these days about how it is up to us to stay fit and healthy and how obesity is totally our own faults, does nothing to improve how I and I suspect millions of others feel about their spreading bodies that can’t be exercised. There is nothing in this world that I can do about avoiding a future of possible diabetes, heart failure or strokes, yet daily I hear over and over that it’s my fault. As I said yesterday, it’s bad enough seeing it, without being told wrongly that we are to blame, we’re not. I am strong enough as a person to brush most of it aside, but on my bad days, well I admit it doesn’t help hearing it again, for those who are really struggling with depression, I can only imagine what it does to them. It often feels like those of us with chronic health conditions are being brushed under the medical carpet, with them just waiting for us to disappear as we are making their result tables and offices look messy. I don’t get that attitude as unless there is some major breakthrough that isn’t visible yet, chronic illness will continue even after they have the majority running marathons, not smoking or drinking and living the perfect life, some of us will be still sitting inside, in pain and unable to take part. Not because we don’t want to, but simply because our bodies through no fault of our own, have given up.


Please read my blog from 2 years ago today – 1/11/12 – The visit

Good morning world! don’t know why just felt like saying that. I am sat here at 9:30 in the morning all sorted for the day, hair done and everything, why? Simple, Teressa is on her way to spend the day with me. I haven’t seen her for two years, something that should change now that she is in the UK to stay but with……

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……