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

The daily battles

As each day goes by, I realise more and more just how much I used to take for granted. I never once thought twice about the fact that I could cook my own meals, come and go freely from my house, dress with ease, or climb stairs. They were just regular daily things that I did. I know now, how luck I was to be able to do all of those things.

At uni, I could wake up half an hour before a lecture and have had breakfast, gotten dressed, and been out the front door in 20 minutes. Now I wake up and have to decide whether I need to yell for someone to help me through to the kitchen for breakfast or if I think I can hop to it myself. I cannot cook or carry things due to the fact I am highly likely to end up having a spasm or go blind. Some days even just putting my trousers on can take a good twenty to thirty minutes. All in all, just getting ready for the day can take me a good hour and a half, and on bad days over two hours.

Getting me in and out of the house is yet another issue. First I have to hop down to get out the front door and then hop up three rather big steps. This would not be so bad if I had the ability to balance or had some coordination.Unfortunately I have neither, so trying to get me out or into the house normally involves me trying my best not to hop/fall into the bushes but I usually fail. In the past even with the use of both legs, I have managed to fall down these steps numerous times.

Despite having to battle with my dystonia daily, just so that I am dressed for the day or so that I can go out, I remain positive. I am convinced that with all the hoping I am having to do, I will eventually learn to balance and have some sense of coordination. Even if I don’t manage to learn these two skills at least I shall provide entertainment for those around me.

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Comments on: "The daily battles" (2)

  1. Awww must be so difficult for you, cannot imagine how you must feel every minute of every day, yet still you are positive and have a sense of humour, amazing :o) xxxxxxxxxx

    • Thank-you, it can be hard to be positive sometimes, however I see no reason to get down about it all. Its not an ideal situation to be in, but with such an amazing and loving support network, I know that I can cope with whatever life throws at me. xxx

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