Posted in Archive, August 2013

Taking back control

As you will know from my previous blog post a couple of days ago I was withdrawn from university after being on sick leave for a year because of my Dystonia. I had a few days of “why me” and “I want to go back to placement” before I actually sat down and thought this is not the end of the world, I refuse to do nothing, what can I realistically do now.  So I had a look at my local colleges and what they offered, to see if I could find anything that interests me. I had been toying with the idea of going into reflexology for a while now and discovered that one of the colleges near me offers it. As my hands are behaving very well at the moment, I have taken a leap of faith and applied for the course. I am waiting to hear now if I have an interview or not. Not only will I be able to study if I get place but it will be a great chance for me to meet new people.

On holiday we discovered that my ability to go out and about had grown, so I was able to do much more than I was used to. Since coming home I have made a conscious effort to try to maintain this new tolerance level. I have managed to come through and spend some time in the living room and eat with my family in the dining room etc often, which is a huge improvement to before where I spent the majority of my time in my room. I even made it to Church today.

I have reached a point now where I am finishing a chapter and starting a new one so to speak. I have spent the last year hoping that some cure would magically be found and that this september I would be back at uni. Now that the reality has hit, I am closing that chapter an opening a new one that is full of possibilities. Maybe I shall get on to this reflexology course, maybe I won’t, who knows where I will end up.

Dystonia has been controlling my life now for long enough. I acknowledge that it’s always going to be apart of me, but I control my own life and I’m taking back the reins. I just need to know my body’s boundaries and respect them, so that I can start living my life again.



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

3 thoughts on “Taking back control

  1. Rebecca,
    I am glad with you about your new mobility and the borders which you know now apparently.
    Nice I think that you want to form your life in spite of dystonia.
    Only so it goes.


  2. Really pleased that you have put that one to bed Becky and that you are now full of new plans. Your positive attitude is an excellent weapon against the negativity of illness and I am so thrilled that you are now seeing signs of you holding the beast in check. Love, hugs and positive vibes are sent your way from so many people every day xx


  3. Hi there. I was diagnosed with dystonia two years ago and at the time I was studying for a PhD. It was something I had wanted to go my whole life but my condition made it virtually impossible to sit on front of a computer, never mind travel around to do my research. Like you, I took a year away from it to see what the Botox injections would do. But when I returned to university, my supervisors said I could no longer continue with it because I could not guarantee what would happen with my condition. I was distraught. What had been my whole life since the age of 17 had been taken away from me and I had been lumbered with an incurable condition to boot! However, after recovering from the initial shock, I decided to throw my energies in to my job. That was a year ago. Since then, I have been promoted; I have won 2 awards for my work; I have delivered presentations to numerous groups of people; and I have met some extremely brave and compassionate people who also have dystonia. What I am trying to say is: don’t ever give up. Life can deal us some harsh blows but you never know what is around the corner. Sometimes, the things that happen to us which, at the time, are hard to grasp are the things that can take us in a completely different, but wonderful, direction. Good luck with what you do 🙂 All the best…


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