A Cold Wind

I have written many posts about my body being a human barometer and I am hesitant to do it again but I am in so much pain today it is ridiculous. I am worried about repeating myself. I hate this time of year simply due to the fact the temperature / weather patterns are constantly in a state of flux. That means air  pressure drops and rises sometimes in the space of a day and it leaves me in so much pain it can’t be ignored.

As always I try to keep moving, I have found keeping moving although painful, is the lesser of two evils. Staying static will cause problems later in the day, by limiting movement it will cause me to seize up, making movement more painful in the long run. 

I seem to say the same thing over and over to Mr Myasthenia Kid, which is “can you close the back door please?” Small drops in temperatures cause me pain. It sounds melodramatic but it has always been the same. A cold draft or a subtle change in temperature is enough to start the pain off in my legs and I will be stuck with that pain all day. When I say legs it is in fact my lower back all the way down to my toes. The only way to combat this is to stay warm and avoid those changes in temperature, it isn’t always easy as even just a breeze that is a degree or less cooler than the temperature I am used to is enough to cause me pain. 

It causes arguments in the winter, as in closing the back door and in the summer when hubby likes to have the air conditioning on full blast. I hate the fact that changes in temperature and air pressure hurt me. It makes me sound like a delicate flower which I certainly am not.  Once cold my legs will take hours to heat up again, they go white and feel cold. One way to improve their temperature and reduce the pain level is to go to bed and put the electric blanket on its highest setting. Another way is to have three hot water bottles, one on my lower back and the other two under each bum cheek. Quite often during the winter I will be wearing tights or leggings under my jeans if I have to leave the house. In the summer it means I rarely wear shorts or cropped trousers. Wearing anything that exposes my legs means they are more at risk of experiencing a change in temperature and that will cause pain. It means I spend the summer always feeling ridiculously over dressed and on some occasions way too hot. But it is the only way to prevent the pain, the pain is a million times worse than getting over heated.

The weather has been abnormally mild here in the UK for the last few weeks. Normally by now we would have the heating on but the temperatures have been abnormally high and now that we have a dog that doesn’t open the back door at night and leave it wide open making the whole house freezing, there really hasn’t been a need to have it on. Today however the temperature has dropped a bit and it is really windy so the house is feeling colder. So despite the fact I haven’t been outside the weather changing so suddenly has left me in a lot of pain.

I describe the pain in my hips as feeling like someone has removed my hip joints and replaced them with metal spikes. Every movement of my legs makes it feel like the bones v  metal spikes are grinding together. Sometimes it is enough to make me throw up, there are no painkillers that will stop the pain I have to wait until the cold is out of my bones ( well that is how I describe it ). It is one of the reasons why I always wear socks and slippers as getting cold feet will also set the pain off. 

This is something that has definitely got worse as I have got older. Years ago I would jump in the bath and get warmed up, now that option isn’t available to me as we got rid of the bath and had a shower cubicle installed as I struggle getting in and out of the bath. I really do wish ( more so ) in the winter months that we still had the bath just so I could get in it and drive the cold out from my bones. I sound like an old lady but this is something I have always had and never been able to explain it. Although when you talk about it to someone else who suffers the same way they understand you immediately. It is like a bit of weirdness that you thought was only yours isn’t so weird and there are others who are the same. It makes it a less lonely space to occupy.

As soon as Dembe gets back from his walk with his dog walker ( hubby is on a late finish ) I will be getting into my PJ’s and covering myself in my electric throw and hot water bottles to try and get the pain to reduce.

I would love to know what causes this pain reaction to changes in temperature. I don’t know if it is part of Raynaud’s disease (more info here ) or part of Ehlers Danlos syndrome. I just wish there was something that would reduce the pain quickly when it starts. All I know is that when a cold wind blows I am in serious amounts of pain.

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