HOW DYSTONIA CHANGES YOUR LIFE, varies from one person to the next, but it’s how we deal with it that really matters! 

I have had Dystonia since a child but didn’t know what is was, and I adapted to my normal I had children and then held down a demanding job, I mainly had a tremor and my neck used to get stuck and was very painful I didn’t know it was Dystonia then.
8 years ago my life started to change dramatically I look back and think the menopause may of been one of the reasons!
I had to finish work and to be honest felt very angry with the world! Why me? I had my life planned out, loved my job and was annoyed with myself for not being able to cope!

I had problems with my jaw, neck, left shoulder, my torso and my legs I was and am still in constant pain, I walk into things, lose my balance, fall over my body seemed to of taken on a life of it’s own.

I have Botox in my neck every 3 months and take a lot of muscle relaxants which make me tired and fatigued, I have had a constant headache for over 3 years because of the tightness in my neck. All of this has had an impact on my Mental Health and I suffer with Anxiety and Depression.

Now when I look back I used to clean my house in a day, today I’ve cleaned the bathroom and that’s me done for today but I look at my bathroom sparkling clean and am proud I’ve done it!

I think what I’m trying to say is mainly for people starting their Dystonia journey and feel scared and lost! You have to grieve for the life you had but then remember it’s not the end of your life you just have a new life now!
Life becomes easier when you allow yourself to move on with your new life, Dystonia may not affect you very much and you can continue as I did for a long time or it can change your life completely!
Accept that change and even though you are ill life seems to become better! 
I can say it’s probably taken me nearly 5 years to come to terms with the new me, but I realised if I spend all my time being bitter that my life is passing me by, 
I have so much to be grateful for and DYSTONIA will not beat me but I also know it’s not going anywhere it’s with me for life so I will take it with me when I venture out and explain to people if I need to 
I AM STILL ME AND WILL MAKE THE MOST OF THE GOOD TIMES 
At the moment I am struggling as I have just had Covid and it has knocked me back but that is another update soon of how Covid affected me and why I believe people with bad Dystonia should be on the vulnerable list