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

Posts tagged ‘member of parliament’

Visits from the Doctor, the Occupational Therapist and our MP

Yesterday I was visited by my GP, my Occupational Therapist and our Local member of parliament. I found the visits interesting in their different ways. The first to visit me was my Occupational Therapist, she is an amazing woman, who does above and beyond what is required of her. She has looked after people who suffer from Dystonia before, so she has a good idea of what the condition is like. Upon being in the house for 20 minutes, and watching me have bad jaw spasms and many Non Epileptic Seizures, she could not believe that I had not been admitted into a hospital as an emergency case!

Next came my GP. My GP is lovely, he does try his best to cope with my condition, but he has never dealt with Dystonia before so has very little understanding of how to treat/cope with it. My GP came to do a home visit as my head has not been right since I hit it on New Years Day and because due to my new Seizures there was no way we could safely get me out of our house. He did the usual basic observations, e.g my blood pressure, my pulse and my temperature. All where normal except my temperature which was ever so slightly up. My GP had never seen my Seizures before, and I don’t think he had a clue what to do with them. After checking me over, he decided that my body was most likely just fighting something off and that was what was causing the new seizures, and the collapse the other day. He did say he would inform my consultant as well.

Now this is the bit I find interesting.  Compare the reactions of the Occupational Therapist who has seen Dystonia before, and the Doctor who has never seen Dystonia before. One thinks I need to be hospitalised as an emergency case and the other thinks my body just has a bug. I think these two very different reactions, are very interesting.

Finally our local member of parliament came to visit. This visit did not go as I had hoped, he listened, made noises in the right places and said he would right a letter. I’m not sure what I was expecting him to say but I had hoped for a more positive outcome than what did happen  The most interesting thing he did was freak when our cat entered the room. It seems that I am going to have to do more complaining myself. I plan to start by writing to the heads of the hospitals whose system have failed, and take it from there.

Living with Dystonia is never going to be easy, and I can only hope that I will be one of the 1 in 20 of us who randomly, for no known medically reason, go into ‘remission’. I plan to draw as much attention as I can to this condition, until someone in the NHS or government realise that their system is failing us!

 

Dystonia Update, Consultant Musings, + More!

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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