Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘excitement’

My thoughts and theory’s

So today my head it full of things bouncing off each other. I had a theory that I touched on briefly post or two ago that I have now put into action. Today I went to specsavers to get my eyes tested, as I was convinced my last eye prescription was wrong, my thoughts was right. My eyes often feel like there being strained and I find it hard to focus on words or the TV etc. as it really hurts my eyes. This, I think, is why my eyes then spasm upwards and go blind. Therefore today when I purchased my new glasses I also had a tint put on them and anti-glare (the Optician felt it was necessary, and would help my eyes a lot). If my theory is right then this should completely stop my blindness. I am hoping that my theory is right!

I would love to talk to my consultant about this theory and all the amazing improvements I am making at the moment, so that he is kept up to date and could offer his own thoughts and advice. Somehow though I don’t think this will happen any time soon, especially as the urgent email (he told us to email him if we needed him) we sent him 4 weeks ago has still gone unanswered, despite phoning his secretary to chase it each week. This I find slightly odd as when I was not his patient he answered our emails the very next day. I shall just wait/chase them some more and see what happens.

I am still mega excited about the prospect of returning to uni in September! I am still improving a little bit more ever day, which I am taking as a positive sign. Therefore I have completely thrown myself back into studying/revising the topics we did at uni. I just cannot wait to be back there!

 

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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.

I have a treatment date :-)

After the disappointment of having my last treatment date cancelled, I have finally been given a new date…For tomorrow!! I am extremely happy and excited. Though I am trying to contain the excitement a little bit as my face has developed a new spasm since my lovely surgeon last saw me.

The surgery will consist of my jaw joint being washed out, the jaw wiring being removed and botoux injections being administered to both sides of the jaw. All of this will hopefully mean that I will finally be able to open my mouth, chew, talk properly and no longer have the horrid jaw jaw wiring slicing my cheek open every  few minutes. 

I am a very happy girl.

😀

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