Monday, 6 February 2012

The nightmare that is cold weather

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.