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

Breath of Fresh Air

After Tuesday nights functional paralysis drama, I am pleased to report that my little Dystonia alien has not scared me witless with a repeat episode (so far). In fact other than a light and pain triggered seizure whilst at college yesterday, I have been rather good. I even managed to go riding on Thursday!

I spent Wednesday in bed resting, as I did not want to trigger off any spasms or seizures as I desperately wanted to attend both college and riding on Thursday. Amazingly my Dystonia gave me break from the recent dramatics and I only had to contend with my usual spasms. The normality of the usual spasms were a much-needed breath of fresh air. Both college and riding went fantastically well, with my spasms only acting up right at the end of riding – thankfully that was perfect timing,

Yesterday, for several hours my legs were functionally paralysed, this did not scare me as I am used to this happening several times a week. It turned out that it had been triggered by me strapping my splints to my legs too tightly – but hey its a lesson learnt. I now know to always check the tightness after strapping myself to them. I had a little light and pain triggered seizure whilst I was at college yesterday. I feel very lucky that the college dealt with this calmly and once I regained consciousness they let me carry on as if nothing had ever happened, which is just how I hoped they would react.

Today my body is extremely sore and I am experiencing an on/off functional paralyses to my legs. Therefore I am having a lazy day in bed. I am so happy that I am managing college and riding. I had been worried that the two would be too much for my body to cope with, but so far so good. It is days like the last few that remind me that despite being in a wheelchair and not really having control of my body, I can still make a life for myself and enjoy the things I love. I just have to remember to balance  things out… I’ll get the hang of balancing eventually 😉

 

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Comments on: "Breath of Fresh Air" (3)

  1. Thanks for sharing your thoughts.Things come along to try us but you certainly wont be held back in what you want to do.l admire your courage and one thing is certain with dystonia,there is always tomorrow.Well done.Have a lovely weekend.Love Maggie xx

  2. sandy evason said:

    So glad to read that everything has returned to your new level of ‘normal’ and that you have managed to do a few things which you truly enjoy. I pray that the progress, albeit, slow continues and little by little you will begin to feel less sore and more in control. You really are a gutsy young lady and I know some might say that you have little option but, I find it so inspiring that you have chosen to have a good and active life despite your ‘alien’. My love continues out to you and my prayers continue for a baby step every day. Love and hugs xx

  3. Hi. What a great post. It’s amazing what a great attitude will do. And you’ve got it in spades. Just keep focussed on where you want to go and you’ll get there.
    Best wishes
    DG

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