Living with Dystonia
Hi, My name is Yasmina, I am 25 and from Scotland but now living in Melbourne. I was born with a movement disorder called myoclonus Dystonia, which means I do not have full control of my muscles and any of them can jerk rapidly at times.
It was when I started school and I compared myself to the other children that I realised my body worked a little differently to others. I sat in awkward positions in my chair to try and stop the jerking so I could write and I struggled to give presentations. At this point, no one had any idea what was wrong, I had been seeing a paediatrician alongside my sister but it was difficult for them to diagnose us. I had two brain scans and began to see various neurologists, but we were still no longer closer to answers.
As I continued my way through school it started to impact my confidence and self-worth. I spent many days frustrated, blaming myself and embarrassed by my jerking. I began to avoid situations that would trigger the jerks and I had decided that if it didn’t disappear then I would just live my life hiding in the background.
When I turned 18 I began to try different medications to see if they would help, some made me love my appetite and others made me weak. I found medication that worked in the beggigning but usually it was only meant for short term and I was living with a long-term condition so I had to increase the dosage constantly. In the end, it made me unwell and I no longer felt myself.
At 19 I hit rock bottom and I was extremely unhappy. I was constantly in tears and I just felt lost. Then when I was 20 I decided I could no longer live my life this way and something had to change, so I saved my money and bought a one-way ticket to Australia. After I turned 21 I left my family and friends behind in search for a better version of myself.
I met some amazing people and I slowly started to open myself up and try new experiences. There were many things that i thought i would never be able to but i slowly began to realise it wasnt my condition that was limiting me, it was m attitude towards myself and being scared of what others would think. At one point in my life when i didnt even like getting the bus alone and yet there I was travelling around Australia alone. Over the years my confidence grew and I began to love and accept myself. I also focused on more healthy alternatives like diet and exercise to help strengthen my muscles. Writing has also been great for helping me move on from the past.
Now I am happy in my own skin and I still live with the jerk but it doesn’t rule me. I started up my own blog about my life living with dystonia and working on organising fundraisers to help raise awareness. MY life has done a complete 360 and I wouldn’t change anything about it, I only hope I can inspire and help others through their journey because no one should feel alone.