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

Posts tagged ‘peace’

Peace of Mind

The last several days have been very busy and very positive.  I finally feel that I am getting things in place that I need and have an aspect of control. As I have little control over parts of my body, having control over some aspects of my life is very satisfying and makes up for my Dystonia alien crazy ways.

This coming Monday I am going to my local hospital for an appointment with the Orthotic department. My splints have served me well over the last few months, however as it has gotten  colder my spasms in my legs have gotten worse. My right leg spasms so strongly that it often manages to escape my splints. I am hoping Orthotics may have an idea of what they could do to help. If not I have some images of some splints that I think may be able to contain my legs. It would mean having a solid front section to the splint as well as a solid back, this I think would work well as it would be a lot harder for my leg to break through. I’m looking forward to hearing their ideas.

When the Dystonia hit my legs I was given your standard NHS wheelchair – lets describe it as sturdy. My poor mother struggles to lift it in and out the car, and watching my friends lift it makes me feel awful. Recently however the functional paralysis that I experience on and off has meant that my wheelchair needs some extras added to it but this is not something that is possible. This has meant that  when I have an episode of paralysis affecting my back I have ended up flopping half out the wheelchair and being stuck till it comes back.

So after a couple of weeks of pointing this out repeatedly to the NHS Wheelchair service I am now being reassessed to see if I qualify for a voucher that would enable a chair to be customized for me.  Even better news is that the even with all the extra things added to it the chair will still be much lighter than my current one.

Knowing that my splint and wheelchair issues are going to be dealt with has given me such peace of mind and enabled me to relax. They are such small issues but in the long run have a big impact so having the two solved will make a big difference.

Last Saturday I attended a bring and buy sale at my local Church. One of the stalls was raising money for The Dystonia Society. In the end just over a £100 was raised, which is incredible. I would just like to say a huge thank-you to everyone involved.

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