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

Today is one of those days where I find myself  thinking about everything. The other day I had to inform my university that I would not be able to return to my midwifery training because of my Dystonia. I still have to speak to them a bit more about it in the next few days. Yet sitting here right now, my body is completely behaving, I feel normal. I feel like I am able to just get up and walk about and do what ever I want. Part of me even dares to say you’re fine. However I know I am not fine, yesterday evening I went blind three times, my jaw was in spasm and my body was very jerky. I know that the reality is that I am not fine or ‘normal’, but my body at this very moment in time feels like I am.

A large part of me wants to just get up and walk about and see what happens, I know that there is a huge chance that my right leg shall immediately play up and I will end up on the floor, but then again if I don’t try these sort of things out, how will I ever know what I can and cannot do, or what progress I may have made.

My consultant, when I first met him, gave me the impression he was wonderful and would fix me. The reality of it has finally sunk in, unless you’re sitting in front of a consultant or doctor the chances are that unless you fight them they will do bugger all for you. The way I see it right now is that I have two choices, I could spend my days feeling sorry for myself and waiting until October/ November next year to get treatment or I could start pushing my body a little bit further everyday and start trying to retrain my brain myself.

Over the last few weeks I have tried to push myself, so far it has been successful 98% of the time. I can now use my right hand to hold a spoon, I can stand with my right foot flat for about a minute or two which is a huge step. I am making what I think are huge positive step forwards and that is without the help of doctors or consultants, the people who should be helping me! I have also noticed that I tend to go blind when I feel like my eyes are straining, the obvious solution to this in my mind, is to go to the options and get some new glasses, so my eyes don’t have to strain so much, after all there is no harm in trying and it may stop the blindness.

What irritates me the most is that I am having to struggle through this and try to figure out how to beat Dystonia with very little help from the medical profession. They are the people who should be giving me ideas of how to help myself, or new things to try etc, yet their not doing any of this, I am lucky if they even return my calls or emails. The care the NHS provides shocks me constantly, I feel completely abandoned by them. However I will  not settle for this level of care. I plan on doing my best to bringing attention to the failings of the NHS system.



Comments on: "Musings on my Dystonia and the NHS" (3)

  1. Rebecca, Doctors certainly span the spectrum and the behavior of some is quite shocking. I’m lucky to have a fabulous movement disorder neurologist in NYC who’s always responsive to my needs and enlists me as a partner in my treatment. Whoever we use, we know our bodies best and are our own best advocates with the medical profession. Every health care system has failings, one of the reasons I’ve become involved as a Dystonia Advocate here in the States. I’m encouraged that you are motivated to voice your grievances. Is there a possibility for you to change doctors? -Pamela-

    • Hi Pamela, I’m not to sure at the moment. When I see my consultant next I am going to ask about putting a plan in place so I get my injections regularly instead of waiting months at a time for them. If that fails then I shall talk to my doc about getting a new consultant, unfortuantly many consultants here are not comfortable with administering the botox injections in the jaw. xx

  2. Rebecca, I know there are two kinds of Botox used in the States and one allows more frequent injections (I think every 6 weeks though don’t quote me). I have a friend with Dystonia about the try the latter as he’s finding the time between injections (3 months) too long. I’m no expert on injections as my Dystonia is treated entirely with oral medications. -Pamela-

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