Fighting Dystonia, Chronic Lyme, EDS Type 2 & more… any questions?

Posts tagged ‘sensations’

Musings on my upcoming treatment

Back in 2009 I was admitted into my local hospital with Complex Regional Pain Syndrome in my right leg. I stayed in hospital for a total of six months and still suffered with the condition for a few months after that. The condition meant that despite the fact that I could see my leg so I knew it was there, I didn’t feel like I was connected to it. It would change temperature, colour and sensations. I could not bear even the touch of clothes, and was not able to move it. As a result I had intensive physiotherapy and Hydrotherapy, which thankfully worked a treat for me. I had to learn to move my toes/leg/walk again and retrain my brain to understand that the floor or clothes etc. were not actually harming me.

Due to what I went through with the Complex Regional Pain Syndrome, I can understand how/why my Neurologist has recommend an intensive physiotherapy and rehabilitation treatment plan. I completely get how it will hopefully (fingers crossed) help with my symptoms in my arm and leg. What I am curious about is how it will help with my facial spasms and eye spasms!

When I had intensive therapy before, I basically had to bombard my nerves constantly. I was given exercises to do every hour (in the day) if the physiotherapists were not with me. This meant standing and putting my foot on the floor or running brushes up and down my leg etc. They were all extremely painful but it was by forcing myself to do this constantly that my nerves resumed normal activities. I am expecting that my upcoming treatment will be similar, I am presuming that I shall be made to do movements/activities that will bring on a spasm repeatedly in an attempt to retrain my brain. To me this makes sense, however with my facial spasms they tend to be pretty random, though sometimes I feel this has something to do with eating. Again my eye spasms are random and vary between the length of time they last, with the shortest being seconds long and the longest being 15 hours.

I know that I cannot get any answers to my musings until I am there and taking part in the treatment programme, but I am so curious! The whole disorder intrigues me so much. The human body is such an incredible thing, and although we know so much about it, when it comes to the brain we know very little. New things are discovered all the time, and each new discovery allows for more research to be done. We learn more and more each day. I may not even get the answers during my treatment. One small thing could trigger another. I can’t wait to see what my treatment plans does for my dystonia! Its a big unknown but hopefully one with a positive outcome.

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The battle for my leg

Yesterday the little dystonia alien decided it was bored of manipulating my face, arm and hand. It decided it needed yet another toy. It chose my leg! For a long time now my leg has not been completely normal, every now and then it would over bend or I would get odd sensations running up and down it. I choose to ignore these niggles and put it down to issues I had had previously with my leg. However the last 4 or 5 days these niggles had got more frequent and were more noticeable, I decided that now was the time to speak up and express my concerns. So off we went to the doctors and yet another medicine was added to my cocktail of drugs, in attempt to try and lessen the dystonia aliens effects.

Yesterday the alien decided to up its game again. Instead of causing the usual niggles, it decided to cause a painful spasm that twisted my foot inwards and curled my toes up, then it decided to shake violently. The alien decided to do this each time I attempted to walk. In the end I could just about walk on the tips of my toes, however sometimes this set the alien off as well. So I spent the day hopping around, trying to get on with the day as usual and attempting to distract my self. However when I got up to try and walk today, I decided to try and walk normally, hoping that the spasm would not return. But after taking two steps the alien decided to play games, the spasms once again twisted my foot inwards at a bent angle and curled my toes up before shaking violently.

Due to the little dystonia alien also affecting my right arm and hand, I cannot even walk with a crutch, as holding a crutch would set off the spasm in that hand and arm. Therefore I have had to resort to using a wheelchair for getting out and about. Its not a ideal option but for the time being its a realistic one. I went out shopping with my parents to get a few bits today in my wheelchair. At first I was bit anxious, I knew that now more than ever I would be stared at. However once again I found that the stares just reassured me that I could do this, that I didn’t mind. After all, if it was the other way round I would most likely also be just as rude and look.

I feel so thankful for the support and love I get from my family and friends. Without them it would  be a much harder battle with dystonia. With their love, help and support, I am able to get on with daily life and be happy. I know that no matter how hard things get, they will always be there for me. I am so thankful for them!

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