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

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 intermission for a year. Today I was withdrawn from university on debilitating health grounds. You have no idea how much I wish to pull my little Dystonia alien out and scream at him.

My university was extremely kind about it all and I hope that in a few years time if I am well enough that I can reapply to do my Midwifery degree. In the meantime I plan on doing a Level 3 in Anatomy and physiology, and once I’ve finished that I will see where I  go from there. I have known for a few weeks that this conversation with my uni would have to happen, and have dreaded it. I had hoped that as I knew it would happen that it would not be too bad however the reality is that I am extremely upset and want to scream at the doctors until they invent a cure.

I struggle to understand how it is ok for Dystonia to upturn, stomp all over and turn inside out our lives. I struggle to comprehend why sufferers then have to fight for treatment and care. I struggle to accept the reality I’m living. I won’t ever accept it, because none of this is ok. I know one day a cure will be found and I hope it shall be in this lifetime so that I can reapply for uni.

On a brighter note my body is not too bad today which is nice and a DVD called The Host which I have excitedly been  waiting for has arrived – It is a fantastic book and an amazing film. I plan on doing nothing for the rest of the day other the watch The Host again (even though I only finished watching it ten mins ago), and then I am going to indulge myself in a bit of 50 shades freed as it’s an easy read.

Tomorrow will seem brighter, and I will get there eventually, one way or another.

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Comments on: "Harsh Reality" (6)

  1. sandy evason said:

    What a bummer, Becky, but it will leave you time to work on all those wonderful tricks and techniques that you are learning to beat the gremlin. And, think how well equipped you will be for your course by the time you have finished you physiology. I know it is a dark day today but usually when the light goes down it means it is time to rest. Good luck with everythin. Love and huge hugs xx

  2. Never give up!

  3. You’re totally awesome, just so you know.

  4. Murray Wright said:

    Thank you for sharing this with us Rebecca, if courage was money then you and your family would be a millionaires.

  5. Szilvia Kidd said:

    you WILL get there eventually Becca…. xxxxx

  6. Sandra van der Veer said:

    Thank you very much for your “written” words about your experìence with Dystonia. It gave me the feeling that I am not the only one struggling with this “little monster inside of me”! Sometimes it is really difficult to deal with it and almost impossible to fall asleep at night. I used to enjoy my meals, but at this moment “eating” is more a crime! I wish you all the best and thank you again for your words on this site! Kind regards, Sandra. By the way, I’m from Holland

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