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

Today has involved yet another fierce battle against my Dystonia and my Non Epileptic Seizures. A battle which is still yet to be won. I try to defend myself against my neurological demons by sitting up as slowly as possible  attempting to use distraction techniques as I attempt each task, but so far my neurological demons are one step ahead of me, constantly ready to launch their next attack on my body.

I am spending most the day in bed at the moment, to recover from Tuesdays incident. Just to get up to go to the toilet is almost impossible. 9 out 10 times just by sitting up a seizure will happen, this then means I have to try to sit up again, which is rather painful due to the sprains and soft tissue damage caused by Tuesdays fall and seizures. Once I have won the battle to get up, my mother and one of my siblings have to help me walk to the toilet and back. This can take a long time in itself as if I collapse and seize on the way there, I find it extremely hard and painful to get back up.

We  are still unsure of how many seizures I am having, as some of them I am completely unaware of. My body hurts a lot but my head is the worst. I feel dizzy often and have a constant feeling of there being too much pressure in my head. I feel like someone needs to put a needle into my head and drain out whatever is causing it. It is a rather painful feeling.

This battle for control is very physically and emotionally draining. I desperately want back the control of my body, but my Neurological demons seem to have other plans for me at the moment. I am hoping that my consultant (when he bothers to get back to us) will be able to provide us with some advice.

 

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