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.
When I received my miracle unconditional offer from Oxford Brookes this year my mother and I ended up have numerous discussions on how I would manage on my own at uni. These talks mainly focused around the idea of having carers, 3 or 4 times a week, to help me with basic household tasks that some days are just too much for me to manage. At the time I was insistent on doings myself and put my foot down. I was determined to be an independent, strong, young woman who could manage all aspects of life without any help. Numerous other adults alongside my mother, pointed out that my mum would be right, university would be a reality shock, not only with an increase in work load but also with a huge increase in social life.
Needless to say I listened to what everyone had to say, I took it on board, and promptly carried on with my own plans. Not only did I want to be independent but I was also worried about the judgement I may face from my peers at needing care. My bedroom is rather large, which is great for days when I rely on my wheelchair, but I can easily overdo it by cleaning without realising it. I tried for two weeks before I resorted to carers. Giving in and saying “Yes, I need help!” was honestly the best decision I have made since being here. My fears of being judged and avoided like the plague where unfounded. There have been no drawbacks, just pure relief. I have more time and energy to put towards tasks that need doing for uni without having to worry about little things like hoovering.
My next task to tackle is pacing. For 3 years I have listened to my neurologist tell me to pace my life and stress the importance of it; and for three years I have simply nodded my head and carried on charging on. I have always been focused on the next achievement. It’s not taken me long to realise that tactic will not work for me here. Running on full steam will leave me having a flare-up frequently, which I simply cannot afford to be doing. It’s time to get my act together and learn the mysterious art of pacing…