Something I haven't touched on in this blog as yet is weight. It is a battle that I fight alongside CRPS itself. Bit of context first as always.
I have never been thin. You would probably have described me as stocky pre-CRPS. I am a smidgeon over five foot and have the sort of metabolism that means if I look at a cake I'll put on weight. Because I was into sport, the gym etc I was able to keep the weight down. I also had a lot of muscle because of the sport so as I say, stocky pretty much covers it.
The huge snag however is that I have always had a complex about my weight, always thinking I was fat, looked huge. You get the idea. My poor husband had a running battle getting me to eat. I would rarely have breakfast, and would probably skip lunch so essentially mainly ate in the evening. I was forever starving myself in an attempt to lose a bit of weight. It's a psychological problem I've had from a very young age, partly because of my mother (there's a whole book I could write about her!!), happily never to the point that I would become anorexic, but it's been ever-present. I have always beaten myself up over my weight and what I eat. I have always hated how I looked.
Imagine how I must feel now? I can hardly walk so no exercise opportunity there. I have a motorised wheelchair as it's the only way I can realistically get around with a semblance of independence. It is incredibly difficult to push yourself in a normal wheelchair with your legs elevated to 90° to my upper body. I hate being pushed and love the speed I can go! Only chance I get of moving quickly these days. The vast majority of time I am sitting in my reclining chair.
I manage to do a little bit of gardening thanks to the raised beds we had created in the garden a couple of years ago. I can't get out there regularly because the punishment is severe and it's incredibly frustrating anyway. Everything has to be brought too me because of the legs. I can never reach, and of course I'm sideways on which makes things even more 'interesting'. Equally, going out, say to the Lakeside shopping centre, wipes me out so I lose days trying to recover. Speedway leaves me wiped out for days. What I can do when is dictated by CRPS, so what on earth can I do to not put on huge amounts of weight?
The obvious thing is my diet. Well if I starved myself before imagine what I'm like now? Eric is driven to distraction as I refuse to eat anything more than a 1oz bowl of bran/cornflakes for breakfast and dinner. He buys other stuff to tempt me into variety but gets nowhere if I'm honest. I then have a small tea, often leaving some despite the fact I have a small portion anyway. I would estimate that I eat between 1000-1200 calories maximum a day. At this point I can almost hear Eric saying 'not even that many!'. Sorry my love...
My bloody-mindedness comes to the fore once more, I refuse to eat anything I consider I shouldn't and if I do have a treat (like pudding or a cake) I will beat myself up about it. Makes life even more exciting as you can appreciate. We visited a dietician very early on, and she was more than happy with what I was eating, even said I should probably be eating more. Yep I ignored that last bit! Of course the condition doesn't help either. I have horrendous swelling in both legs. All the muscle I had has gone in my legs because they don't really ever bear weight. It is the upper body that does all the work. As a result I have 'bulked up' in my upper body making me larger there too. I used to suffer horrendous pain in my arms, shoulders and lower back. Nearly 6 years later and my upper body can pretty much cope with anything I throw at it. I have no idea what I weigh as I couldn't get onto scales and stand there anyway. I have put weight on, obviously, but not a huge amount.
So the only other thing left is exercise. Remember I loved exercising, so it is a double blow that I am now so totally limited. I do some archery but that isn't really exercise in the true sense. Well bot to me anyway. I have one of those feet peddling things which I use with my arms. Trouble with that is that of course it is resting over my upper legs so makes my legs worse. The only other thing I have found is to 'play tennis' on the PS3 using the Move controller. I thoroughly enjoy this as of course I used to play tennis pre-CRPS. Bear in mind I am doing this sitting in my reclining chair as always with my legs up. My legs aren't involved at all. It is all upper body. So why on earth then does it completely bugger up my legs? God forbid I can actually have some fun and not be punished for it!
I have to say that over the years I have slowly come to terms with my situation and the fact that there isn't really anything more I can do about my weight than I am already doing. That has been a huge mental step, although I would be lying if I said I hadn't lapsed numerous times. I still fundamentally hate the size I am, it is still a struggle not to beat myself up constantly. As Eric and others tell me, all things considered I am doing extremely well with my weight. I'm not enormous, I can still wear the shirts etc that I wore pre-CRPS. It is only trousers, socks and shoes that have increased, and that is because of the swelling. Eric is a fantastic cook so it would be all to easy to eat loads of his lovely food, especially his cakes which are to die for! I don't and will continue to fight it. I will also continue to try and do some exercise as and when CRPS lets me, not just because of my weight, but also because it is so fantastic to actually do some exercise. I get such pleasure from waving my arms around hitting an imaginary ball, it's the closest I'll ever get to playing tennis again. It's incredibly frustrating not being able to do more. A lot of the time I do some even though I know I shouldn't. That won't come as a surprise though will it?
A final thought - about my stupid GP. I have a borderline thyroid problem so we do a blood test every three months to see if it has worsened. After the recent one he called me in. I don't generally go into the Doctor because it is one of those cases where the ordeal simply isn't worth the effort. We assumed it was because the thyroid was causing more of a problem and we needed to start medication. No it was to tell me that my cholesterol is a little elevated! His answer - eat less. I did my best to tell him that I eat very little anyway and have a healthy diet. No, I just had to eat less. He went as far as saying that he didn't care what I ate, just eat less of it. He also rambled on about how I could end up needing a hoist in years to come blah blah blah.
I was devastated, upset and very angry. Just how insensitive had he been? Absolutely no allowance made for my condition and what I'm up against. Just the same advice he would give to anyone else. Of course mentally it re-enforced the demons that are never far away. It shows I still dwell on it because I'm writing about it here.
Just another example of how the medical profession is ignorant about my illness.
I have never been thin. You would probably have described me as stocky pre-CRPS. I am a smidgeon over five foot and have the sort of metabolism that means if I look at a cake I'll put on weight. Because I was into sport, the gym etc I was able to keep the weight down. I also had a lot of muscle because of the sport so as I say, stocky pretty much covers it.
The huge snag however is that I have always had a complex about my weight, always thinking I was fat, looked huge. You get the idea. My poor husband had a running battle getting me to eat. I would rarely have breakfast, and would probably skip lunch so essentially mainly ate in the evening. I was forever starving myself in an attempt to lose a bit of weight. It's a psychological problem I've had from a very young age, partly because of my mother (there's a whole book I could write about her!!), happily never to the point that I would become anorexic, but it's been ever-present. I have always beaten myself up over my weight and what I eat. I have always hated how I looked.
Imagine how I must feel now? I can hardly walk so no exercise opportunity there. I have a motorised wheelchair as it's the only way I can realistically get around with a semblance of independence. It is incredibly difficult to push yourself in a normal wheelchair with your legs elevated to 90° to my upper body. I hate being pushed and love the speed I can go! Only chance I get of moving quickly these days. The vast majority of time I am sitting in my reclining chair.I manage to do a little bit of gardening thanks to the raised beds we had created in the garden a couple of years ago. I can't get out there regularly because the punishment is severe and it's incredibly frustrating anyway. Everything has to be brought too me because of the legs. I can never reach, and of course I'm sideways on which makes things even more 'interesting'. Equally, going out, say to the Lakeside shopping centre, wipes me out so I lose days trying to recover. Speedway leaves me wiped out for days. What I can do when is dictated by CRPS, so what on earth can I do to not put on huge amounts of weight?
The obvious thing is my diet. Well if I starved myself before imagine what I'm like now? Eric is driven to distraction as I refuse to eat anything more than a 1oz bowl of bran/cornflakes for breakfast and dinner. He buys other stuff to tempt me into variety but gets nowhere if I'm honest. I then have a small tea, often leaving some despite the fact I have a small portion anyway. I would estimate that I eat between 1000-1200 calories maximum a day. At this point I can almost hear Eric saying 'not even that many!'. Sorry my love...
My bloody-mindedness comes to the fore once more, I refuse to eat anything I consider I shouldn't and if I do have a treat (like pudding or a cake) I will beat myself up about it. Makes life even more exciting as you can appreciate. We visited a dietician very early on, and she was more than happy with what I was eating, even said I should probably be eating more. Yep I ignored that last bit! Of course the condition doesn't help either. I have horrendous swelling in both legs. All the muscle I had has gone in my legs because they don't really ever bear weight. It is the upper body that does all the work. As a result I have 'bulked up' in my upper body making me larger there too. I used to suffer horrendous pain in my arms, shoulders and lower back. Nearly 6 years later and my upper body can pretty much cope with anything I throw at it. I have no idea what I weigh as I couldn't get onto scales and stand there anyway. I have put weight on, obviously, but not a huge amount.
So the only other thing left is exercise. Remember I loved exercising, so it is a double blow that I am now so totally limited. I do some archery but that isn't really exercise in the true sense. Well bot to me anyway. I have one of those feet peddling things which I use with my arms. Trouble with that is that of course it is resting over my upper legs so makes my legs worse. The only other thing I have found is to 'play tennis' on the PS3 using the Move controller. I thoroughly enjoy this as of course I used to play tennis pre-CRPS. Bear in mind I am doing this sitting in my reclining chair as always with my legs up. My legs aren't involved at all. It is all upper body. So why on earth then does it completely bugger up my legs? God forbid I can actually have some fun and not be punished for it!
I have to say that over the years I have slowly come to terms with my situation and the fact that there isn't really anything more I can do about my weight than I am already doing. That has been a huge mental step, although I would be lying if I said I hadn't lapsed numerous times. I still fundamentally hate the size I am, it is still a struggle not to beat myself up constantly. As Eric and others tell me, all things considered I am doing extremely well with my weight. I'm not enormous, I can still wear the shirts etc that I wore pre-CRPS. It is only trousers, socks and shoes that have increased, and that is because of the swelling. Eric is a fantastic cook so it would be all to easy to eat loads of his lovely food, especially his cakes which are to die for! I don't and will continue to fight it. I will also continue to try and do some exercise as and when CRPS lets me, not just because of my weight, but also because it is so fantastic to actually do some exercise. I get such pleasure from waving my arms around hitting an imaginary ball, it's the closest I'll ever get to playing tennis again. It's incredibly frustrating not being able to do more. A lot of the time I do some even though I know I shouldn't. That won't come as a surprise though will it?
A final thought - about my stupid GP. I have a borderline thyroid problem so we do a blood test every three months to see if it has worsened. After the recent one he called me in. I don't generally go into the Doctor because it is one of those cases where the ordeal simply isn't worth the effort. We assumed it was because the thyroid was causing more of a problem and we needed to start medication. No it was to tell me that my cholesterol is a little elevated! His answer - eat less. I did my best to tell him that I eat very little anyway and have a healthy diet. No, I just had to eat less. He went as far as saying that he didn't care what I ate, just eat less of it. He also rambled on about how I could end up needing a hoist in years to come blah blah blah.
I was devastated, upset and very angry. Just how insensitive had he been? Absolutely no allowance made for my condition and what I'm up against. Just the same advice he would give to anyone else. Of course mentally it re-enforced the demons that are never far away. It shows I still dwell on it because I'm writing about it here.
Just another example of how the medical profession is ignorant about my illness.
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