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Tea Party Success
Yesterday I threw a fund raising tea party to raise awareness and funds for The Dystonia Society. The day exceed my expectations by miles, which was fantastic! More people than I had anticipated turned...
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Blissful Days!
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...
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New Neck & head spasm.
As I mentioned in yesterdays blog a couple of days ago I developed a new spasm. Its rather painful in the neck and gets a lot worse when I am tired. I have spent the majority of today with my webcam...
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Simple Lessons
Every day I have plenty of spasms. Some are short and not to bad, others last hours and cause agony, and some simply make me laugh due to the positions I find myself in, for example I once ended up...
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Stimulant Experiment Results
As many of you will know, around a month ago I attempted to cut all stimulants out of my diet to see if it would have any impact on my tremors. Over the last week I have slowly introduced stimulants in...
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A Fairly Positive Week
I have had some really positive moments this week! On Tuesday I had a meeting with a woman who works for a service called Cross Roads. Their service provides a range of support. On a Thursday morning,...
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Dystonic Jaw Tremor
Earlier on today my jaw developed a sort of tremor. It is extremely painful and my teeth constantly caught against my tongue and gums. It is hard to explain exactly how this tremor goes so I have...
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Troublesome Tremor & Consultant Conundrum
On Friday my jaw developed a painful tremor (see video on previous post) that has caused me more and more issues. Since Friday I have visited the out of hours doctors, been rushed by ambulance to...
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Which Open Door Shall I leap through?
Despite it being the third most common movement disorder Dystonia goes almost unknown to the public. It lingers in the shadowy background letting its brothers, Essential Tremor and Parkinson, take the...
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A Year On
I am now a year into my battle against Dystonia and life has changed dramatically. A year ago I was a student midwife, now I am disabled and spent a lot of time trying to raise awareness of Dystonia....
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Empowerment & Independance
Independence has been a big issue for me ever since Dystonia hit me. I went from living at uni and being very independent to moving back into my family home and relying on my family to do everything...
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Life Is What You Make it
When I first got ill last summer I thought it was the end of the world, life as I knew it was over. What I should have thought is that my life is a bit like a snow globe and someone simply tipped it...
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Summer, Spasms, Stories -I need your help!
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...
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Harsh Reality
September 2011 I started at Anglia Ruskin University in Chelmsford on a Midwifery degree. It was the most amazing experience of my life. July 24th 2012 I developed Oromandibular Dystonia and was put on...
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Taking back control
As you will know from my previous blog post a couple of days ago I was withdrawn from university after being on sick leave for a year because of my Dystonia. I had a few days of “why me” and “I want to...
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Finding My Feet
So after a few days of feeling a bit rough due to a viral infection, I am finally feeling more myself. I try to avoid picking up any illness as much as possible as when I get a bug my Dystonia acts up....
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Craft Fundraiser for Dystonia.
Today I attended a craft fair that was fundraising for a school and for the The Dystonia Society. I had been rather looking forward to it as it was a great opportunity to raise awareness and to restock...
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Blog Birthday!
I have been blogging for a year today! I started my blog to help raise awareness of Dystonia and what it is like to live with it. I was inspired to do this as when I first became ill and got the...
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Positive Days!
Last Thursday my riding lessons started up again. It was the first time I’d ridden since June, so I was extremely excited to be getting back on a horse. As usual I rode Nelly who is a complete delight...
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Functionally Paralysed
Terror. That one word sums up how I felt for 7 hours last night. My face had not been good for most the day, and by the evening my tongue didn’t want to stay inside my mouth and my jaw was slightly...
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