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

Acrobatics

The ability my Dystonia has to twist my body into any position it desires never ceases to amaze me. Having hypermobility syndrome aids it somewhat. The two conditions are both painful and amusing. Over the last year my body has got itself into positions that are simply not natural. I always knew my hands moved in ways that were not normal, but never realised that the rest of me could.

Some of the positions Dystonia has put me in has reduced me to tears of both pain and laughter. Take for example last October, I ended up on the floor doing the splits, something that I had never done before. A month or so ago, the spasm in my leg caused my leg to turn back to front, a movement that shocked those around me and triggered a non epileptic seizure.  At other times it has caused slight embarrassment, but this is something I accepted as part of the Dystonia parcel a long time ago.

This evening I was crawling to the next room as I did not want to use the wheelchair, my right leg quickly spasmed sideways, I ignored it as it was not preventing me from moving. However whilst I was crawling through the doorway my hip went into a spasm causing my spasming leg to shoot up and my foot to become caught under the door handle. Both my mother and step dad came to help me. My mum supported me incase I had a seizure and my step dad wrestled with my spasming foot to free it. I was on my hands laughing. The situation was ridiculous. At 20 years old I am crawling around trying to have some sort independence yet even this simple act is not alway possible. It is so ridiculous that I did not feel cross or upset, all I could do was laugh it all.

Throughout the last year my spasms have shown me just what my body can do, and it amazes me. I often joke that I would make a fantastic acrobat or ballerina. Though the spasms cause pain and pull my muscles, I refuse to let it get me down. Instead I see it as a strange talent that provides entertainment for all.

After all why cry when you can laugh?!

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Comments on: "Acrobatics" (1)

  1. sandy evason said:

    Becky, Becky, Becky. You amazing soul. I understand the laughter and it is a wonderful facility that, sometimes mentally, you can stand back and see the ridiculous in the diabolical situations in your life. Laughter is our survival mechanism and often helps to put things into perspective. I am so pleased that you have such a wonderful family around you, to help and support you. You have made me laugh, weep, smile and swear almost in the same moment whilst reading this. If that is what is happening to me, Sweetheart, you must go through such a spectrum of emotions. Keep that spirit strong and know that you are loved and sooooo respected for your refusal to be daunted. We are all allowed to rest, weep, and stay still at times, in order to re-group and I so admire your determination to re-group after each onslaught. Keep on keeping on Becky and know that there is so much love and support for you and your family. What an inspiration and a lesson for us who say we ‘battle’ with this or that in our lives. Some of us don’t even know what it is to battle. Love and hugs to you and your family xx

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