Posted in April 2013, Archive

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

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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.

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Author:

I'm 27 years old, a mother, author, partner and spoonie. I suffer from Dystonia,POTS, EDS, Osteoarthritis and Lyme Disease. I have set up my blog to help spread awareness and bring light to this condition. This blog will be full of all my experiences that happen during my dystonia and chronic illness journey, from natterings, musings, moans, laughs, highs and lows. :-) It will be a little bit of everything

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

    1. dystoniaandme – Tring, Hertfordshire, – I'm 27 years old, a mother, author, partner and spoonie. I suffer from Dystonia,POTS, EDS, Osteoarthritis and Lyme Disease. I have set up my blog to help spread awareness and bring light to this condition. This blog will be full of all my experiences that happen during my dystonia and chronic illness journey, from natterings, musings, moans, laughs, highs and lows. :-) It will be a little bit of everything
      dystoniaandme says:

      Thank-you xx

  1. I enjoyed your post and applaud you for your positivity! I have Cervical Dystonia and while we all have varying levels of Dystonia, focusing on the positive and attempting to totally eliminate the negativity is a full-time job all by itself, isn’t it! Keep up the good work and thank you for sharing a bit of your life. :))

  2. Dystonia Muse – I'm a friend, daughter, sister, creative mind, honorary auntie, fan of the quantum mechanical, hopefully one-day spouse, now also health care advocate, here to share my life-journey with the neurological movement disorder, Dystonia, which began with a "mis-step" when I was 8-1/2. Though Dystonia may have staged a coup over certain body parts, my heart and soul remain firmly my own. I invite you to join me on my quest to find the comedic lurking in this chronic epic!
    Dystonia Muse says:

    Rebecca, I’ve found that life is all about the little things. It’s entirely unfortunate that many people port negative viewpoints and miss the beauty in front of them. All we can do is try to associate ourselves with the right kind of people and, like you said, make the most of our lives. There really is no dress rehearsal, this is it, might as well seek out the silver lining. -Pamela-

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