Posted in Archive, July 2013

Life Is What You Make it


When I first got ill last summer I thought it was the end of the world, life as I knew it was over. What I should have thought is that my life is a bit like a snow globe and someone simply tipped  it upside down and gave it a good shake and that eventually everything would settle into the right place. Now it may have taken a while but everything is beginning to settle for example why I still hate Dystonia and battle against it, I also embrace the opportunity it gives me to make a difference.

This last week has been extremely busy. Something I am not used to and left me feeling exhausted and wiped out yesterday. I was also overjoyed. I had been busy, and not just in lots of hospital appointments kind of way but in a social interactive enjoyment filled way. It’s like a distorted mirror image of what my life was like previously and you know what I am happy with it!

I may moan that I don’t like what Dystonia does and that I hate the lack of control I have, but at the end of the day I am happy. Compared to a lot of people I have an amazing life. I am surrounded by loving people all wanting to help me, and I am so thankful for them.

This morning I had a fantastic long catch up with a good friend from school who I had not seen in awhile. It was great and it felt just like old times. This evening a lovely friend I lived with at uni is coming round for a cheeky chinese. I am able to be sociable and have a social life, and I am embracing every second of it. I have even started dating, something I thought would not happen for years.

I am doing things I thought I would never do again, that Dystonia had ruined. Now I realise Dystonia never ruined anything, it restricted me and all I needed to do was find the courage in myself to fight back and find ways to get my life back on track.

My life is my own, no matter how much my little alien tries to interfere, it is mine and mine alone.




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

4 thoughts on “Life Is What You Make it

  1. You are a brave lady! I am so pleased that you can feel happy in spite of everything, and hope those antibiotics will see the end of your problems, in time. Thought and prayers are with you often. Elizabeth

  2. When I first started to read your blogs, I couldn’t help thinking a young person of your age should be going out with friends (dating if you like) and living life, annoying old farts like me by being a young person.

    I am delighted to learn that you are going out with friends and living life as much as possible. Giving up is obviously not an option for you and I very much doubt you ever it ever was. Great to see.

  3. Divanicio – Eu sou Psicólogo, Psicoterapeuta, especialista em Psicopedagogia e Gestão em Saúde Mental. Eu vivo com distonia focal do tipo câimbra do escritor. I am Psychologist, Psychotherapist, Specialist in Psychopedagogy and Management in Mental Health. I live with focal dystonia, known as writer's cramp, since my childhood. I believe a cure will be found!
    Divanicio says:

    Rebecca, I really liked your words of optimism! I understand you.

  4. I love the positive comments, my Dystonia did not, show up until my ,40’s, my husband of 16 years asked, for a divorce, my child of 23 ,years quit talking to me, couldn’t handle my illness, now ,this started in 2012, now with pacemaker @ host of other medical cronic conditions, dating has been different. Don’t get very far @ most end up being friends, or runners. Running out the door. My nondisabled friends there not, around anymore. But they couldn’t deal with my disabilities / conditions. I would love to find a support group in my area. But I do love reading your blog. Need a dating website for dystonia/with other medical issues. Although, have to admit dating websites scare me.sorry rambling,love your blog don’t feel alone now.

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