Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

There are many aspects to life with Dystonia; to address them all would take hours. So I’m going to focus on just a few this evening. As with any condition, once you are diagnosed, many sufferers go through a soul searching period. This is simply trying to work out who you are now. Inevitably we all change, for better or worse, once a chronic condition develops. You’re still the same person, just with a few modifications.

At eighteen I was a Student Midwife. There was not a lot else that made me who I was. I was a daughter, girlfriend, and student. I felt fulfilled. If you had told me then that in less than a year I would be unable to practice midwifery I would laughed. Midwifery was my passion, to even entertain the thought of another career seemed ludicrous. I could talk about the subject until I had grossed people out enough that they were begging me to stop! Now at 23 I am a daughter, student, freelance writer, blogger, reflexologist, advocate and Spoonie. Midwifery is but a happy memory that still brings a tear to my eye. I put up with less drama, I have no patience for anyone who only wants to be around during the more upbeat moments of my condition, and I am a hell of a lot stronger than I used to be.

It has taken four years to get to this stage. I have gone through denial: refusing to acknowledge that my illness won’t just disappear. I was so lost in this that I even reapplied and was interviewed to go back to study Midwifery. A small moment of madness in reality. I have grieved for the person I was, and that life that I lost. I have floundered in uncertainty, whilst those around me helped keep me from sinking into waves of despair. Now I finally have accepted who I have become. Despite everything I have been through, and am still going through, I am happy and thriving.

There are still days when I question why I have experienced the things I have. Only last night I was joking that I must have been a dementor in a previous life, for why else would I be sentenced to this path? Melodramatic I know, but it doesn’t make that feeling any less. Despite my illness I have no regrets. I am surrounded by people who love and support me every time I fall. Through my Dystonia I have had the opportunity to meet and talk with a number of individuals who I admire greatly. I have made many new friends. I have contacts around the globe! At the end of the day, I am happy. I cannot ask for anything else.

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Comments on: "Dystonia: Who am I now?" (2)

  1. samcharvey said:

    You are amazing!

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