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

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!

 

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Comments on: "Visits from the Doctor, the Occupational Therapist and our MP" (8)

  1. May you be well, and have ease and happiness in your heart.

  2. Brilliant blog today Rebecca. Well written, well put! xx Stay strong! xx

  3. you go girl. i canno undestand why your GP is not listening to the Phsiotherapist and as for the MP, well, that is just what you would expect. He didn’t even seem to notice the courage you have in wanting to take on this fight. Poor, sad soul. sending you loads of love and p[osoitive energy xx

  4. Elizabeth Sims said:

    I admire your courage hugely, and hope you get more help and understanding very soon. Elizabeth Sims

  5. I have my own Demons to deal with, both concerning Dystonia and some that just haunt my life in general. I am MORE than Dystonia. I am a human being with Dystonia.I have a life. I write, I am going to school perhaps in Fall. I can’t wait to leave this hell hole for good.I’m
    constantly thinking of leaving.

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