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

Simple Lessons

Every day I have plenty of spasms. Some are short and not to bad, others last hours and cause agony, and some simply make me laugh due to the positions I find myself in, for example I once ended up doing the splits! Thankfully the muscle relaxant that my GP put me on has helped and has slightly reduced the frequency and intensity of these spasms.

Earlier this afternoon my whole body decided to spasm, it was slightly painful and was not the most comfortable position to be in, but despite that I managed to laugh through it with my mum. Knowing that the spasm would eventually release was a big comfort and made it more bearable. I have included some pictures of the spasm below, in them you can see that my eyes, neck, arms, stomach and leg are all in spasm.

In today’s culture people often seem to want to focus on what we cannot do rather than celebrate what we are able to do. Even the term Disabled focuses on it. I don’t like being labelled  but if I have to be then I would rather be termed as Differently Able, as I am capable of doing the same things as any body else, it might just take me longer, I may even do it slightly differently but at the end of the day I can still do it!

One of my symptoms causes me to go blind. My eyes go into spasm and my eyeballs roll upwards in their sockets. Being blind on and off has taught me to appreciate the beauty that surrounds me in daily life. I previously took my sight for granted, the day I went blind for the first time terrified me, I was having a big panic that I would not be able to read again. Now when I am able to read I appreciate the ability more than ever before. Control of our bodies and good health is such a precious but fragile gift that people tend to abuse. We need to open our eyes to the world and learn to appreciate what we have. Society needs to understand the gifts that senses such as sight brings us and learn to focus on the positive side of things.

I could easily allow myself to drown in a pool of negativity but by focusing on the little things in life like being able to see, and by pushing myself to achieve what ever I set my mind to, I am able lead a positive life. I have my moments of being down, just like everyone does but I wont ever let having Dystonia beat me.

 

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Comments on: "Simple Lessons" (4)

  1. I really do feel for you. I am one of the few people who actually understand what you are going through. I am 13 years old and my mum has general dystonia. I have known my mum in spasms for up to 7 hours that will obviously cause her agony. She has recently been prescribed procycladine and diazepam and they have helped immensly. I will definitely suggest that you mention it to your GP. I hope you fine this useful and I am always here if you want to talk… Just searched my page on facebook – jasmine anastasia scurr<3

    • Hi Jasmine,

      Thank-you for your lovely comment. I am extremely sorry to her that your mum has generalised Dystonia! I have tried procycladine before and worked wonders especially for my jaw, however this was given to me by a&e so I only had a few days worth of it. When I spoke to my consultant about he brushed it off. However I have recently written him a letter asking if I would be allowed to try it again xx

  2. I have no idea how can you laugh about dystonia… I’m thirty, and I have a generalised form for 23 years, and I never enjoyed it… especially when you write about blinding bit, this is awful! It’s so good you have your mum to support you! Nobody has ever supported me in my family, even my dad who has dystonia too. So for me there is nothing good about that illness. It just makes me achie and unable to be normal…

  3. At any rate, I’m very happy that someone talks about it. I don’t know why, but I find it difficult to write about it. Tried few times on facebook, but ppl think I just complain… they don’t like reading about suffering…

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