Posted in April 2013, Archive

Dystonia: Its a bit of a roller-coaster, would you scream or enjoy the ride?

In life everyone has their own hopes, dreams, demons and struggles. We each suffer and achieve in situations others would not. None of us, are the same, yet we all judge each other and ourselves harshly.  As a society we are very quick to overlook all the positive and beautiful things that surround us, we focus intently on negativity like vultures. If you are not careful, the pessimistic world that we live in can appear suffocating.

Yesterday I decided that I felt well enough to push myself around a Garden centre that we visited. I was over-joyed that I was pushing myself for so long without setting off a spasm in my hands. I even managed to push myself up a slope for the first time. Now I know that does not sound impressive but it was a fantastic achievement for me, that I am very proud of. It took me a good minute to get myself up it, but I did it myself without any help!  I was having a great time,  and even had a sense of freedom due to pushing myself. However a handful of people who I came across that day, did not see the girl achieving her goals and enjoying a new sense of freedom, they saw someone who was slowing them down, a few tutted or stared as they paused to let me pass. Now I just smiled sweetly each time, as I was having too much fun to pause and give them a lecture on Dystonia. I wish those people had taken the seconds that it took me to wheel myself past them to appreciate some part of life instead of focusing on a negative, we were in a garden centre, a place where they could have easily focused on the beauty of nature.

Dystonia, like life, is one giant roller-coaster that will take you from feeling on top of the world to rock bottom in a number of seconds. You can choose to become a vulture like the majority of society, feed off endless negativity and suffocated in it. Or you can choose to accept there are days when you’re not going to be on top of the world and things will look bleak, but you can still take the time to appreciate what you have in life. I could very easily roll over and feel sorry myself, and stop trying to defeat this hideous illness. Instead I fight day and night against Dystonia, I try my best to be optimistic (though some days I can be a bit grumpy), I appreciate everything this illness has done for me e.g brought me closer to my family, showed me friends in the unlikely places and much more.

Dystonia is a challenge, and I plan on enjoying every little achievement I make. Small steps can lead to big things, who knows where I’ll end up.

Posted in Archive, January

A Bit Of Retail Therapy!

Today has been the highlight of my week and has distracted me from the new issues with my leg. My mum and step-dad took me out clothes shopping, which meant that I also got to push myself in my new wheelchair!  I knew that trying on clothes and pushing myself would be exhausting, so I made sure that I paid extra attention to my right hand, so that I did not do too much and cause it to spasm.

All in all  it was a rather successful day out! I managed to get some jeans and some lovely new tops, and I managed to push myself for longer than I had expected. From time to time my mum did have to remind me not to over do, I think I got a bit carried away with having some independence 🙂 In total I think I managed to push myself for about 40 mins!!!! This was a lot longer than I had expected. When I went out in my chair briefly the other day, I only managed about 20 mins, so this was a huge improvement!! It was a tiring but fantastic day!

I am going to go and see my Doctor this week, and see if he can suggest any medication that will help with the tremor in my right leg and talk about my ideas with him, and get his views on it all. I am also going to write an email to my consultant explaining to him the change in my leg and how it is affecting me and getting his advice on what to do about it, I shall also inform him of my ideas for treating my leg and get his opinion on that as well.

Today was exactly what I needed, some laughter, retail therapy and some independence. It helped me refocus my mind on everything, and see that although my leg is bad and making things really rather difficult, it is not the end of the world. I can still go out and laugh and shop like anyone else, the only difference is that I get to sit on a comfy cushion and attempt to tone my arms by pushing myself along at the same time!