Posted in Archive, August 2013

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?!

Posted in Archive, October

Last nights Dystonia antics

I have never been a flexible person. The only part of my body that is flexible is my arms and wrists. However last night the little dystonia alien decided to show me just what it could make my body do. For a few hours before my dinner, my leg had been playing up a bit, my foot was bent and was dragging behind me. However during dinner it seemed to calm down and I relaxed. When I tried to get up from the table and hop to the living room, with my mum helping me, the dystonia alien decided to wake up. Before I could brace myself, my leg went into a spasm, sliding itself backwards. My stepbrother fetched a chair for me to sit on, so that I didn’t fall down. Yet my leg kept going backwards. Within minutes I had no choice, I had to either try to slide myself off the chair and onto the floor or have the spasm cause me to fall onto the floor. By the time I was on the floor, I was literally doing the splits. Despite being in agony, I had to laugh, I am not flexible, yet here I was on the floor in spasm doing the splits.

Eventually the spasm eased off and with the help of my Grandmother and my Mum, I got up off the dining room floor, and tried to hobble through to the living room. However the dystonia alien had not finished playing games. My right leg and foot shot behind my left leg. To those around me, it must have looked like I was curtsying. Yet again I ended up on the dining room, the spasm had pulled my leg as far as it could go. Again I ended up laughing. I am not sure whether I laughed because of the situation or if I laughed in exasperation, perhaps it was a bit of both. It took a fair length of time for the spasm to ease off.

I still cannot get over how far my dystonia pulled my leg and foot last night! The spasms in my leg and foot have always been pretty extreme and odd to look at, but last night was ridiculous. I now wish I had gotten someone to take a picture/video the spasm so I could show the specialist, I shall remember to ask someone to do so next time. Despite last nights spasms being so extreme, I feel rather positive today! I surprised myself at how well I coped with the pain of the spasms last night, especially with them being so extreme. I feel that with each spasm the dystonia alien throws at me, I gain more confidence, as I know that I can deal with my spasms fairly well.