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

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 diagnosis I realised just how unknown this condition is among both the public and the medical society. I decided I wanted to educate as many people as possible about Dystonia, and blogging seemed like the best starting point as society use the internet and social media so much.

Since I started this blog I have had many highs and lows, I have fought to get help, I have had many ambulance trips, and experienced so much more. If you told me a year ago how completely different my life would be as to when I started this blog I would have been adamant about my inability to cope with being in a wheelchair and would have been terrified. Now I admit I have been terrified on many occasions especially when the Dystonia spread through my body, and I don’t like being in a wheelchair, however Dystonia has made me a much stronger person and has inspired me to do my utmost to spread awareness .

I knew when I started this blog that I would have to be extremely honest in everything I wrote and not sugar coat any negative experiences as that would be counterproductive. I have tried my best to write an equal amount of positive and negative posts, however Dystonia is an unpredictable thing and it does not care whether it bring tears to my eyes with laughter or with pain. Many blog posts have been hard to write, such as when writing about my legs being affected by Dystonia I found myself in tears.

Blogging to raise awareness is just the beginning. It has been a flicker of light in the bleak unknown that surrounds the condition but if all of you who read my blog, go on to share it on your Facebook or Twitter etc then that glimpse of light shall slowly become a burning torch, which will enable change to start taking place. Change needs to happen so that Dystonia is no longer a condition hiding in the shadows of its neurological brothers. The more awareness there is, the more help sufferers shall get and the more likely it is that a cure shall be found.

I would like to say big thank-you to my family who have put up with disruptions at all times of the day and night, care for me, support me, and keep me strong. I don’t know how I would cope without you all. An especially big thank-you to my mum, who has been my rock and has put up with my tears and frustration, I love you so much!

I want to also say thank-you to all the sufferers who have supported, given me coping tips and kept me sane! Especially Karen, Shannan, Andrea and Pamela – you guys are amazing!

 

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Comments on: "Blog Birthday!" (5)

  1. maryasmusings said:

    Congrats in the one year mark. That takes much perseverance as I’m learning myself but if we stay focused in the big picture we will succeed and help spread awareness !

  2. your comments are so sweet your heart is so much bigger than your Dystonia. Thank You for your blog! And keep on blogging!xoxox

  3. Franz Krämer said:

    Rebecca,

    congratulations to 1 year to your Blog and many thanks for it.
    You write honestly and you hide nothing. Only so other affected persons can do to themselves a picture of the illness Dystonia.
    You are a person and an affected person who helps by her Blog other affected persons. And in great form.
    I wish that you still write very much long in your Blog.

    Many lots of love from Germany.

    Franz

  4. Rebecca, Sending you congratulations for all your achievements establishing and maintaining this wonderful site and heartfelt admiration for your candor opening up your world. It has been both a pleasure and a privilege to get to know you through our blogging and activism. You sparkle as a ray of light in what could easily be a dark sky. I’ve no doubt your blog has opened up many doors for you, not to mention offering support to those living with Dystonia and making an invaluable contribution to the cause of awareness. The occasion of your blog’s one year anniversary is truly a reason for celebration. -Pamela-

  5. Rebecca, The one year anniversary of your blog is truly an occasion for celebration. Opening up your world and your heart to so many is no small accomplishment. Your contribution to the cause of awareness is beyond measure and by sharing your struggles you encourage everyone living with Dystonia to surmount our challenges and lead more productive and satisfying lives. You are a sparkling ray of light in what could easily be a dark sky. It has been my privilege and pleasure to get to know you through your blogging journey. Sending you my warmest wishes. -Pamela-

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