Living with Dystonia
Updated: Sep 17, 2019
I get messages on Twitter sometimes from my followers asking me what Dystonia is and what it means for me, and I usually stick with the short medical answer. Honestly, I tend to give the same answer when people ask me in person too. But I want people - both online and in my life - to understand it on a more accurate level, which is why I've decided to publish this article today.
I also wanted to write this for my family members who are still acting as though my diagnosis means nothing. It took me a while but I've finally accepted that I'm not the same person that I was before, and that I, most likely, will never be that person again. But by them setting unrealistic expectations for me to be the same person and do the same things, it makes me feel lost and weak. It's extremely tiring for me to act as though I'm not affected by my diagnosis when I'm around them - and I shouldn't have to pretend.
What is Dystonia?
Dystonia is a neurological movement disorder. It's a term used to describe uncontrollable and sometimes painful muscle spasms. It's an uncommon, typically life-long, condition that is estimated to affect at least 70,000 people in the UK.
It all started just over two years ago after a life-changing incident at work. I was at home having a brew, recovering from my injury - a chemical burn to my right arm - when I suddenly dropped my cup. That's when the muscle spasms started. I hated them, but I sure as hell preferred them over the constant tremor that I developed just a few days later. After spending hours and countless appointments at elective care, the three neurologists assigned to me managed to rule out the things that didn't cause my symptoms.
Skipping through the doctors giving me the run around, being neglected for months, and testing medication that made me ill and underweight - I finally got given my diagnosis and the medication to help control it. The pain people with Dystonia feel differs, in fact, some don't experience any pain at all. I, however, do feel pain; shoots of pain that follows a path from just above my elbow to my index and middle fingers. This pain isn't just limited to when my Dystonia isn't 'under control', it just happens, it just is. Each shoot of pain acts as a reminder of how much I have had to endure by the age of 22, and how much has been taken away from me and my future.
I was a drawer, an artist. Being creative brought so much joy to my life. Whether I was drawing detailed and intricate pieces, or painting abstract sceneries, it made me feel content and allowed me to express myself. Being an artist - it's who I was, it was a huge part of me and it was a label I was proud to wear. In fact, it was the one part of me that my mum expressed pride in.
When my tremor started, it all changed. I lost the ability to create something beautiful. I can't put into words how much I long to just be able to open my sketch book and spend days creating something stunning and from my heart.
A quality that I am most proud to possess, is my desire and determination to be independent. I've always wanted to do and achieve things on my own and on my own terms. When I was a baby I never accepted a dummy because I didn't need help. As a child I would reject help to build my toys and Lego houses, because I wanted to build my own empire. In my teenage years, I hated people 'protecting' me from the real world and jumping to defend me presuming I was too weak to do it myself, because I knew I was strong enough to save myself.
So can you imagine how it feels to go from that girl to a woman who has to ask her Nan to wash her hair because the shower head is too heavy to hold; or who needs someone to cut up her food for her, even in public, because she hasn't got the strength needed to cut with a knife and fork; or who can't pick up her little cousins - who idolise her - and play with them like she used to, because she can't bare the thought of them seeing her so weak and pathetic.
Losing the strength in my right arm/hand is, without a doubt, worse than any pain I feel because of my Dystonia. It ripped me of a lot of my independence and pride, and replaced it with helplessness and shame.
On a 'good day' I get to go about my day without the medication making me feel ill, drained, lightheaded and confused. On a 'good day' I can type up a blog post, hold my phone, quickly wash my hair without drying it, and maybe even pick up a cup of tea if it's a really good day. The reality of the problem, is that I don't know whether I'm going to have a good or a bad day tomorrow. Every single day is uncertain.
Due to the uncertainty of my day-to-day capabilities, I am unable to work. There was a time where I thought "what's the point?". I fell down a very dark hole of depression and, if I'm being honest with you, it took everything I had inside to carry on and not end it all. At just 20 years of age this happened, and it felt as though I couldn't have a future. Except, my dad raised me to be stronger than that. So I stood up and fought every single day to get myself out of that hole, and once I did, I set on a path to create my own happiness and my own success - this website.
I'm fortunate enough to have Focal Dystonia, and although it greatly impacts my day-to-day life and my health, there are sufferers out there with much worse cases. There are many different types of Dystonia that affect people in different ways, but the one unfortunate fact we share, is that there is no cure.
The Dystonia Society do incredible work to support and advocate for people impacted by Dystonia, whilst also working towards new treatments and, of course, a cure. If you'd like to help this wonderful organisation continue their incredible work, you can do so here.
If you like what I'm doing and you would like to support me and my little blog, then you can do so by making a small donation via ko-fi here or via paypal using this email - email@example.com