In the winter I quickly discovered that cold weather and Dystonia do not mix, my body spasmed constantly and I had to leave the house with several layers on and a hot water bottle or two! I never worried about how the heat may affect my Dystonia, and if our weather had stayed typically British then I am sure my spasms would have stayed to their ‘normal’ rate.
Now don’t get me wrong I love the fact we have had a lovely stretch of untypical heat, which in turn has led to BBQ’s, evenings in the garden etc, however I don’t love that it is sending my feet and legs barmy. I get through the day but by the evening I want to beg my feet to uncurl. In desperation I bought a desktop fan for my room to help me at night, which is so far working a treat. It has been a delight though to see the blue skies and watch birds on the bushes outside my bedroom window. Summer always brings a little uplift in mood for me which is fantastic.
My Botox is definitely kicking in now and I have barely any pain thanks to the spasms disappearing. I have some pain in my TMJ‘s (your jaw joints) but this is nothing in comparison to what I was in. It is amazing how much of an impact these injections can have and I feel very lucky that I respond well to them.
Thanks to the permission of some amazing people I have compiled a letter for the Health Secretary containing the different stories of people with Dystonia and their struggles for help. The Health Secretary told me he could not deal with just one case so I decided to compile these stories and open his eyes to the struggles we go through to receive treatment! Whilst I recognise some people have had fantastic service from the medical society, so many people have not and their voices need to be heard.
If you would like to help me open up the government and the NHS/private doctors eyes and try to get more help for us sufferers then please contact me with your story at either firstname.lastname@example.org or here https://www.facebook.com/dystoniajourney .
I am in such a fantastic mood! Today, after about 8/9 weeks of not being allowed to ride due to Non Epileptic Seizures, I finally got to get back on Connie. It was a fantastic riding lesson, and Connie was perfect as usual! I feel so confident when riding her, and really enjoyed every second of the lesson. I had been worried about the lesson, as my dystonia had spread since the last time I rode. However I need not of worried as my body behaved itself and I managed to do everything with ease.
I am completely and utterly exhausted but in bliss at the moment. The last few days have been great! My tea party was a fantastic success, the Go Blue Movement is going incredibly well and so far I have raised over £662 for the Dystonia society! It has just been the most amazing couple of days. It has all been so positive and I have been so overwhelmed by how successful it has all been.
If you would like to help me raise money for the Dystonia society please click on this link which will take you to my just giving page http://www.justgiving.com/Rebecca-Moller1 .
And if you would like to join in with the Go Blue for Dystonia movement then either dye you hair blue or wear something blue and take a picture of it and post it on the following Facebook event page link https://www.facebook.com/events/450399491712134/?fref=ts
A little while ago a lovely woman called Rebecca Sharp who lives in America dyed a section of her blue to raise awareness for Dystonia (her father suffers from the condition). I thought this was a fantastic idea and we got talking. We have managed to make it into an international movement with many people agreeing to take part to raise awareness for Dystonia.
Dystonia Awareness week starts tomorrow (Saturday May 4th) and runs until Sunday 12th May. The idea is that during this week people either dye a section of their hair blue (you can even spray dye it) or clip a blue extension in, to show support for Dystonia and raise awareness. It is really easy to get involved with and a Facebook event page has been set up which you can easily join, and you can share photos of your blue hair in! The page also has links for those who would like to donate to either The Dystonia Society (UK) or the Dystonia Medical Research Foundation (USA). Both of these charities do fantastic work for Dystonia sufferers however they are in need of funds.
It’s an easy and fun way to raise funds and awareness and I urge you all to get involved!! Every person who joins in makes a huge difference. So join in with The Go Blue Movement! https://www.facebook.com/events/450399491712134/