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

With the exception of the last few days, the last few weeks my body (apart from my jaw) has not been too bad. Which has been a very nice break for me, but has also lulled me into a false sense of security. When my foot went into spasm the other evening I was rather shocked. That day my whole leg had felt odd, like someone was trying to pull it out of its socket. I found myself to be rather upset by the spasm. Part of me had hoped that I would have a miracle recovery and I would return to uni in September without a worry. Now I know this whole miracle recovery idea was a bit silly, after all Dystonia is not known for being predictable, it does what it wants, when it wants, how it wants, for as long as it wants. However there is still hope for Uni, I have ten months to somehow get better/get my dystonia under control in, so I am remaining hopeful. I have thrown myself into studying/revision, as I think that it is the only thing keeping me sane at the moment.

Last Sunday, my consultant finally replied to our email stating that he would administer Botox injections into my jaw for me, and that he would do that next week. This created some confusion about when he would do it. However a whole week has passed since we heard from him, so that rules out that week. So it shall be interesting to see whether he contacts us to do the injections this week or if we shall have to chase him some more.

In January I am going to meet my local MP, to discuss with him the many pitfalls of the NHS. I have composed a long list of points, that I wish to discuss, over the last few months. I am looking forward to how he shall respond to my questions or if he shall try defend the system.

I am looking forward to celebrating Christmas and my 20th with my family. I am praying that it shall be a happy occasion with no Dystonic movements and be Seizure free.

I hope you all have a Merry Christmas and a Fantastic New Year!!

 

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