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

I am now back from a fantastic and relaxing holiday in the Cotswolds with my family. I think it did all of the us the world of good to get away for a little while. I was shocked and over the moon that I managed to go out everyday and did not have a full body melt down with a handful of seizures thrown in until the Thursday!! We went to a number of places which were more wheelchair friendly than I expected which was amazing, my favourite being Warwick Castle where we watched the jousting.

The week before we went away I saw my reflexologist twice to try to prolong the effects the reflexology has. I am extremely glad I did this as it meant that I slept well until the Wednesday when my body reverted back to its ‘i’ll keep you up till 3am’ normality. My reflexologist is away for a week or so now and I am really looking forward to her return so that I can have some spasm/pain-free nights again. I am now counting down to the 27th when I go to see my neurologist for my injections. It thrills me to know that with them being done so often the pain I normally endure for weeks shall now be almost nonexistent.

Whilst on holiday my eyes went blind several times due to the spasms. Normally this causes seizures, and a few times it did, however I again tried doing sensory tricks to my eyes to see if they would make a difference and for once I seem to have found one that works for me! It only works on the spasm that pulls my eyeball upwards so that only the whites of my eyes are seen. I have found that by putting pressure on my eyes and moving my hands in a downward motion a few times that it encourages the spasm to release. I could have danced with joy when I found this worked as it should reduce my seizures!

I am feeling extremely positive at the moment, and very relaxed after a wonderful holiday. I may not be in control but I am coping and finding ways around my little Dystonia alien. Just got to take it one day at a time.

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Comments on: "Return from Holiday and Sensory tricks" (5)

  1. sandy evason said:

    What a happy girl you sound Becky. I am so thrilled to read that you are, little by little, finding ways to lessen the effects of this cruel illness and to manage it better. Things are so different when you can feel that you have a hand in controlling things and also helping yourself. Sending you loads of love and positive thoughts and I know the improvement will continue. with much love and admiration. xx

  2. Joan Piedmonte said:

    Inspirational to see the joy you found, rather than focusing on the obstacles. Hurray for the injections and hurray for your beautiful way at looking at the world.

  3. Franz Krämer said:

    Rebecca, a great history. I am glad that it goes for you so wonderfully.
    I wish you that the good state stops long and you find ways to hold this state long.

    Rebecca, eine tolle Geschichte. Es freut mich, dass es Dir so wunderbar geht.
    Ich wünsche Dir, dass der gute Zustand lange anhält und Du Wege findest, diesen Zustand lange zu halten.

  4. Hi Rebecca, just do the things you have control over. I have dystonia too and I am much better now after I started dancing. I hope you will get better. Take care. God bless you.

  5. Hi Rebecca, just do the things you have control over. Hope you will get better. Take care. God bless you.

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