Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

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, starting in a few weeks time, a guy is going to come over to care for me for a few hours. This means that my mum and stepdad will get a break from caring for me, instead this guy will socialise with me and help me with my meds etc. Not only will this give my parents a much needed break but it will be great for me to socialise with someone who’s around my own age. I am really looking forward to this starting.

My Jaw and neck spasms are rather bad at the moment. I am doing my best to try to ignore them but it is a bit had to ignore the spasms when your head is completely lopsided and your jaw is pushed right across. We contacted my consultant a couple of weeks ago asking to be booked in for Botox treatment, but as has been the case for over 2 months now, he has still not replied to any of our emails. We are going to phone his secretary tomorrow to ask her to chase him, however she never sees the consultants she works for and can only email them, so I am not sure how much she can do for me.

Yesterday and today have been amazing. Yesterday I had another fantastic session with my personal trainer that left me exhausted but extremely happy! I just love my Wednesday sessions. Today I went up to the stables and had a wonderful RDA riding lesson. I rode Nelly again, she is such a beautiful horse and fantastic to ride. She is slightly more challenging to ride than Connie but I love this as it allows me to work on and develop my skills more! Being around horses and riding puts me on such a high, if I did not have to dismount at the end of the lesson I would stay on the horse for hours! Riding is pure bliss!

As many of you know I took part in several fund-raising activities to raise money for the Dystonia Society and ended up raising more than £800!! Last week I had an email from the Dystonia Society saying that I was their fund-raiser of the month. If you would like to check out my interview please click on the following link http://www.dystonia.org.uk/index.php/component/content/article/5-get-involved/370-fundraiser-of-the-month

 

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Comments on: "A Fairly Positive Week" (1)

  1. Rebecca, Way to go with your fundraising! Just want to thank you for being such a superb activist for dystonia. I’m thrilled to link to this site on my blog. With my latest post – http://dystoniamuse.com/2013/06/13/dystonia-bloggermania/ – Dystonia BloggerMania on Facebook is heating up! -Pamela-

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