Anyone who follows my blog will already know about the wildly different pain types I have to deal with, together with the hypersensitivity in my lower legs because of CRPS. Temperature wise my feet in particular literally have a mind of their own, swinging from freezing cold to boiling hot and anything in between. They can flip from one extreme to the other in seconds. Conversely they can remain stubbornly like ice cubes for a day or more. Or they are so hot I can't bear to have them covered, and have to resort to having wet towels draped over them in an attempt to make them a little more bearable. To give an idea of how hot, the towel will be warm within minutes, and have to be replaced several times before the pain becomes a little more bearable. Even so they remain horribly hot. Then of course there is the increased swelling, leaving me feeling as if the skin is too tight and could burst. They're like this normally, so imagine what they're like when the weather becomes as cold as it is now?
Normal people will add an extra layer to help them warm up. A thicker pair of socks perhaps, or a hot water bottle. It is unbelievably difficult for me to counter cold weather as my legs won't tolerate having socks on, let alone hot water bottles or the other usual ways of warming yourself up. They react badly enough when I go out (very infrequently) where I am forced to wear shoes and socks, and of course trousers.
Normal items of clothing for most but items of torture for me. We do our best to lessen the increase in pain, swelling and so on. It is nigh on impossible. I wear jogging type trousers with very wide legs. My socks come from Cosyfeet, a specialist shoe and sock outlet who supply extra large, extra soft and non-elastic socks. I used to get my shoes from them as well. They make far wider shoes which open wider and have Velcro fittings. Even these became unbearable so we had to search for an alternative. We finally found a very soft slipper, which opens completely so Eric can guide it onto my foot without it touching. As a bonus they have memory foam insoles, which help when I have my legs up in the wheelchair. I have one pair of trousers, one pair of slippers and two pairs of socks. That's it. No lavish wardrobe for me, I wear the same thing every time I leave the house. You find something that works even slightly better and you cling onto to it for dear life. Mustn't forget the other vital piece of equipment, my blue fleecy leg covering, which cocoons my legs and provides an extra barrier to the elements.
Every minute I'm dressed CRPS reacts.. badly. My feet swell, the pain increases, the skin in contact with the clothes becomes itchy. No, not itchy, more like little needles digging into your leg and feet. I desperately want to scratch but of course I can't, want to get the clothes off, but of course I can't. I know that my legs will be going more and more purple, blotchy, sweaty and there is nothing I can do about it. The closer the contact the greater the effect. You want to get home, get these demonic pieces of clothing off, get back under the duvet in my chair. And this when the weather is good. Going out in the snow is a total no-no. Reading this back I wonder how on earth I go to speedway meetings? I must be mad, but it has become the line in the sand for me. CRPS will not take this last pleasure away from me. Well not as long as there is still fight in me.
The problems don't get easier at home. Here I wear nothing other than knickers on my lower body. The rest is cocooned in my duvet, better called a comfort blanket. It isn't perfect but it does provide the best solution we can manage. Any effect of adding clothing is grossly magnified, which is in itself odd? I can only think that the effect is accelerated because of the warmth of the duvet compared to what are really just thin clothes. Who knows? The upshot is that I have to 'sit and bear it', waiting for my feet to warm up, cool down. For the stabbing pains to lessen, the burning sensation to decrease a little. More often than not and especially when there is very cold weather outside my patience remains unrewarded as my legs continue to do what they want and never seem to give me a break.
As a final thought, when you complain about the snow, having to scrape the car windscreen, or being inconvenienced in other ways, spare as thought for those, like myself. We don't have the option to go out, being rendered completely housebound, at the mercy of the elements. I would give anytning to be able to come and go as I used to. Sadly for me that is never going to happen now or in the future.
Showing posts with label cold. Show all posts
Showing posts with label cold. Show all posts
Monday, 6 February 2012
Thursday, 10 November 2011
Staying Positive.... how?
I was looking at the notes feature that Facebook has started and came across entries for a blog I started in late 2009 but gave up on, probably because it was just too difficult mentally.
I am struck by just how little my thoughts, experiences and outlook on life have changed (or rather haven't) in the two years since I wrote them. So I am adding these to this blog as they may help other CRPS sufferers. I had had CRPS for four years when these were written..... here is the first.
Originally written Wednesday, 11 November 2009
I'm sure anyone who suffers from chronic pain, or any other chronic condition has gone through periods of depression, frustration, despair and the biggie.... suicide. I certainly know that I do to a greater or lesser degree all the time. I admit freely that there have been times when I have felt suicidal, especially in the early days.
How do you cope with an illness such as CRPS that literally rips your life apart, takes everything that you did, hobbies, day to day living and so on? My life changed overnight, and I constantly seem to fight to retain the little quality of life that I still have.
It never ends, the condition doesn't give up, you can't cure it so you're stuck with it for life. If you let it life becomes a constant frustration. There is so very little that you can do for yourself, you are constantly reliant on someone else. In my case it is my husband who has become my full time carer. It breaks my heart that I have ruined his life, even though it isn't my fault it's the condition. Thankfully we were very happily married and so work incredibly well as a team. We have to....
At the end of the day though, life for someone such as myself is a battle against pain, and the associated exhaustion and depression that comes with that. I am stuck in a chair all day and then sleep in that chair at night as I can't go to bed. For much of the time I can't do anything except read and then sleep. I can perhaps use the computer for a short time, play a video game, do some puzzles. Going out is a military operation, what with being helped to dress, get in the car, get in the wheelchair etc etc etc. Doing anything makes the pain and exhaustion worse, so should I dare to do too much (which is nothing compared to what I used to do) I get punished and have to just sit in my chair doing nothing.
There are times when I get so frustrated, not being able to do things drives me nuts. Nothing is spontaneous anymore. I can't just nip down the road to get some shopping. I can't go out alone, I have lost all sense of independence. Isolation seems the right word. I will never work again, just getting through life from day to day is battle enough.
I happened to chat to someone, didn't know her, but at one point she said 'You're very positive'. Reflecting on that prompted this post because I thought about why I manage to be positive. I have always been stubborn, bloody-minded and focused. I played sport and so have always been competitive. So I suppose I channel these qualities into my fight against CRPS. That is what life for someone in pain is all about I think.... fighting and not letting it win.
So I try to do what I can. There are days when my only 'achievement' of the day was to have a bath. On better days I might get to go out. I might go out regardless of how I feel because I won't let it win. No matter how small, if I have done something each day then CRPS hasn't won. I accept what I call the 'punishment' for doing things (pain worsens considerably) because doing those things makes me happy and perhaps fulfilled.
The way I look at it is that it doesn't matter if you feel sorry for yourself, do nothing, give up or whatever compared with trying to do things and make the most of the life you have. The pain etc will be the same regardless.
So my philosophy remains that you may as well try and make the most of it, be as positive as you can be. Otherwise what's the point of living? That philosophy is sorely tested more times than I would like to mention but touch wood, I'm still managing to stick to it.
I am struck by just how little my thoughts, experiences and outlook on life have changed (or rather haven't) in the two years since I wrote them. So I am adding these to this blog as they may help other CRPS sufferers. I had had CRPS for four years when these were written..... here is the first.
Originally written Wednesday, 11 November 2009
I'm sure anyone who suffers from chronic pain, or any other chronic condition has gone through periods of depression, frustration, despair and the biggie.... suicide. I certainly know that I do to a greater or lesser degree all the time. I admit freely that there have been times when I have felt suicidal, especially in the early days.
How do you cope with an illness such as CRPS that literally rips your life apart, takes everything that you did, hobbies, day to day living and so on? My life changed overnight, and I constantly seem to fight to retain the little quality of life that I still have.
It never ends, the condition doesn't give up, you can't cure it so you're stuck with it for life. If you let it life becomes a constant frustration. There is so very little that you can do for yourself, you are constantly reliant on someone else. In my case it is my husband who has become my full time carer. It breaks my heart that I have ruined his life, even though it isn't my fault it's the condition. Thankfully we were very happily married and so work incredibly well as a team. We have to....
At the end of the day though, life for someone such as myself is a battle against pain, and the associated exhaustion and depression that comes with that. I am stuck in a chair all day and then sleep in that chair at night as I can't go to bed. For much of the time I can't do anything except read and then sleep. I can perhaps use the computer for a short time, play a video game, do some puzzles. Going out is a military operation, what with being helped to dress, get in the car, get in the wheelchair etc etc etc. Doing anything makes the pain and exhaustion worse, so should I dare to do too much (which is nothing compared to what I used to do) I get punished and have to just sit in my chair doing nothing.
There are times when I get so frustrated, not being able to do things drives me nuts. Nothing is spontaneous anymore. I can't just nip down the road to get some shopping. I can't go out alone, I have lost all sense of independence. Isolation seems the right word. I will never work again, just getting through life from day to day is battle enough.
I happened to chat to someone, didn't know her, but at one point she said 'You're very positive'. Reflecting on that prompted this post because I thought about why I manage to be positive. I have always been stubborn, bloody-minded and focused. I played sport and so have always been competitive. So I suppose I channel these qualities into my fight against CRPS. That is what life for someone in pain is all about I think.... fighting and not letting it win.
So I try to do what I can. There are days when my only 'achievement' of the day was to have a bath. On better days I might get to go out. I might go out regardless of how I feel because I won't let it win. No matter how small, if I have done something each day then CRPS hasn't won. I accept what I call the 'punishment' for doing things (pain worsens considerably) because doing those things makes me happy and perhaps fulfilled.
The way I look at it is that it doesn't matter if you feel sorry for yourself, do nothing, give up or whatever compared with trying to do things and make the most of the life you have. The pain etc will be the same regardless.
So my philosophy remains that you may as well try and make the most of it, be as positive as you can be. Otherwise what's the point of living? That philosophy is sorely tested more times than I would like to mention but touch wood, I'm still managing to stick to it.
Saturday, 22 October 2011
It's going to be a very long Winter
My feet, as you will know, are both riddled with CRPS and have a mind of their own at the best of times. They can go from freezing cold to boiling hot at whim, regardless of the weather. However it is the Winter that I really struggle. The hypersensitivity caused by the CRPS means that any small change in temperature has a response which is completely out of proportion.
As I sit writing this I am sitting as normal in my reclining chair with my legs up. I have already gone up one thickness of duvet. This goes over the top of my legs and underneath so that my lower legs are completely covered. No air can get in. I also have an additional lightweight fleece blanket laid over my feet and a 'slanket' over the top of that.
Despite all of these layers both feet and ankles feel like blocks of ice and have done continuously for at least the last 24 hours if not longer. The stimulus? I touched our laminate flooring when standing up. They are incredibly painful, to the point of screaming and when I get up (only to sit on the commode - just another concession I've made to this illness) they feel brittle. So brittle that it's a surprise that they don't just shatter. I shuffle even more slowly, turning is harder and my chances of falling are greater. I rely even more on Eric to help me move. A distance of no more than a few feet. It's pathetic by any definition of normal living.
Of course it doesn't help that I'm not wearing socks, nor trousers or slippers. It would seem the obvious thing to do. However none of those is an option because they would be in direct contact and so exacerbate the pain. We have to be careful with how heavy the layers we add on top are because any part of the duvet touching toes etc increases the pain. Too much weight means too much contact and so more pain. I just have to sit it out in the hope that eventually some warmth will permeate and they warm up. People have suggested hot water bottles, which of course would be natural thing to try. We have - we wrapped the hot water bottle in several pillowcases then I rested my heels on it. It was unbearably hot. To Eric it didn't even feel warm. This is what I'm up against.
Of course the slightest stimulus such as them becoming exposed to the air, or slightly touching the floor is enough to send them back to being ice cubes again. It's an absolute nightmare. Going out obviously has the same effect. It is a running battle from now onwards. They are particularly bad already, which sadly means that as the title says, it's going to be a very long winter.....
 |
| Bella's usually lying on me in some way or other. |
Despite all of these layers both feet and ankles feel like blocks of ice and have done continuously for at least the last 24 hours if not longer. The stimulus? I touched our laminate flooring when standing up. They are incredibly painful, to the point of screaming and when I get up (only to sit on the commode - just another concession I've made to this illness) they feel brittle. So brittle that it's a surprise that they don't just shatter. I shuffle even more slowly, turning is harder and my chances of falling are greater. I rely even more on Eric to help me move. A distance of no more than a few feet. It's pathetic by any definition of normal living.
Of course it doesn't help that I'm not wearing socks, nor trousers or slippers. It would seem the obvious thing to do. However none of those is an option because they would be in direct contact and so exacerbate the pain. We have to be careful with how heavy the layers we add on top are because any part of the duvet touching toes etc increases the pain. Too much weight means too much contact and so more pain. I just have to sit it out in the hope that eventually some warmth will permeate and they warm up. People have suggested hot water bottles, which of course would be natural thing to try. We have - we wrapped the hot water bottle in several pillowcases then I rested my heels on it. It was unbearably hot. To Eric it didn't even feel warm. This is what I'm up against.
Of course the slightest stimulus such as them becoming exposed to the air, or slightly touching the floor is enough to send them back to being ice cubes again. It's an absolute nightmare. Going out obviously has the same effect. It is a running battle from now onwards. They are particularly bad already, which sadly means that as the title says, it's going to be a very long winter.....
Subscribe to:
Posts (Atom)