When you are solely focused on resolving one particular aspect of yourself, it can leave you at risk of neglecting other factors in your life. At the age of 18, I had allowed myself to be treated like a guinea pig in the hope of finding a cure. I had always concealed how I really felt about “living with a jerk”, and at the age of 18 I just couldn’t disguise it anymore. Painting on smile and making sure it lasted all day became too difficult and I could no longer seal the cracks beginning to appear. I was willing to do and try whatever it took. This is what I decided. I expressed this to my neurologist and so began the journey in taking prescription drugs.
My sister and I were still not officially diagnosed (our blood samples were still being passes around) and there is no known treatment for dystonia. In most cases it’s trial and error, experimenting with what works. Some medication I trialed was for people suffering epilepsy. However I wasn’t concerned and tried everything put on the table, regardless of the side effects. I was reluctant to have any hope but with each new prescription, I wanted to believe it could be the one. For most of us in search for “the one”, we are referring to finding a partner. However this wasn’t the case for me. I spent my spare time researching every possible medication that could work and at one point in time, I was actually able to predict which medication would be recommended next.
The clock was ticking and I was waiting impatiently for my life to begin. Every day I woke up with the jerk, was another day where happiness passed me by. There was no time to waste. Each time I trialed medication and it wasn’t working, I found myself going against neurologists’ instruction and ceasing medication, cold turkey! My mum began to notice my not stepping down the intake of medication because my jerking had suddenly become worse. In fact, it was worse than it had ever been. This was a result of the withdrawal symptoms and not allowing my body enough time to adjust.
I’ve always loved food and could eat any time of the day. My mum would even call me “the human bucket”. One of the medications I was prescribed caused nausea when I ate meals. Even a hand full of crisps would make me feel sick. One year I wasn’t even able to make a dent in Christmas dinner and this has always been a meal I would look forward to. I had started to wear leggings underneath my jeans because they became too loose. I couldn’t estimate how long I was on each medication for or how many I trialed. It all seemed to roll into one. But I remember starting to lose my sense of identity as a result.
Finally I found what I thought was “the one”. Whenever I took this medication I could start to feel every muscle in my body begin to relax. I would sometimes lay on my bedroom floor and enjoy the moments. I could take a bus ride without jerking around and feeling self-conscious. Finally, I felt a sense of freedom. The medication made me feel drowsy but who cared, I was still and calm and that’s what mattered! I could order food without my voice sounding shaky or disappearing completely. I felt like I even sounded better whilst singing in the shower, but that could have also been down to the fact that sometimes I didn’t feel quite with it. I had tasted freedom, but it wasn’t to last.
Over time my body became tolerant to the medication. When the effects wore off, I felt my jerking worsen. I can remember walking down stairs and holding the banister because my legs felt so shaky and unstable. In the past my legs had always been the strongest part of my body. I attended an appointment with the local GP when I grew concerned and I was advised to “just up the dosage”. I did up the dosage and then started the constant headaches. I just wanted to lay down and sleep all the time. Next came the agitation, which forced me to work even harder to complete even the simplest tasks at work. I wanted to jump out my skin and escape, but I couldn’t. I began to hallucinate and notice something rush past me from the corner of my eye, although nothing was there. It was a side effect. I concealed all side effects from doctors, family and friends, because I desperately wanted to believe the medication might work. I didn’t want to be removed from the medical trials or have it appear that I was a hypochondriac. That feeling of freedom had vanished and I was almost worse off than when I had started. –
Twenty years of hating yourself can really take its toll and I was ready just to give up. I started to depend on drinking, smoking and partying to feel just temporarily happy, but whenever I was alone I couldn’t mask up how sad I really felt. In one last, desperate attempt to find happiness I decided to jump in the deep end, and was gifted a one-way ticket to Australia on my 21st birthday from my parents. I knew I wasn’t going to find the answer at the bottom of a vodka bottle. It was time to quit the medication and make a fresh start. So on the 30th of April 2013, I boarded a plane and never looked back.