Tag: friends

Posted in Archive, november

Today’s Thoughts

Posted on by dystoniaandme

My jaw is still in spasm, which is really rather painful. However on the positive side of things, my medication, has really helped and my spasms in my right arm and leg have not been that bad these last few days. The pain in jaw can get rather intense and this tends to cause me to have a Non Epileptic Seizure. I am getting better at identifying when I am going to have a seizure. This means that I am able to inform someone, like my mother, seconds beforehand. This is a huge step and a big positive, as it means that whoever is with me, can try to prevent me from injuring myself during in a seizure. I am hoping that I will hear from the consultant soon, so I can get treatment for my jaw, which in turn should hopefully mean that my seizures will disappear again.

The path my life has taken, at this moment in time, is not one I would have chosen for myself. You would have to be fairly crazy to want to have Dystonia. However I accept that for now Dystonia is part of me, and I cannot magically make it disappear. Dystonia is one of those conditions that on some days is fine and does not play up that much, on other days, it is a gigantic pain.

I am so thankful to my family, friends, and all the many people who contact me to support me. They are all amazing and help me stay strong on my bad days. They help me laugh my way through the spasms, and make sure I don’t hurt myself to much during my seizures. I really don’t know how I would have coped with Dystonia without all these wonderful people in my life!

Posted in September

The battle for my leg

Posted on by dystoniaandme

Yesterday the little dystonia alien decided it was bored of manipulating my face, arm and hand. It decided it needed yet another toy. It chose my leg! For a long time now my leg has not been completely normal, every now and then it would over bend or I would get odd sensations running up and down it. I choose to ignore these niggles and put it down to issues I had had previously with my leg. However the last 4 or 5 days these niggles had got more frequent and were more noticeable, I decided that now was the time to speak up and express my concerns. So off we went to the doctors and yet another medicine was added to my cocktail of drugs, in attempt to try and lessen the dystonia aliens effects.

Yesterday the alien decided to up its game again. Instead of causing the usual niggles, it decided to cause a painful spasm that twisted my foot inwards and curled my toes up, then it decided to shake violently. The alien decided to do this each time I attempted to walk. In the end I could just about walk on the tips of my toes, however sometimes this set the alien off as well. So I spent the day hopping around, trying to get on with the day as usual and attempting to distract my self. However when I got up to try and walk today, I decided to try and walk normally, hoping that the spasm would not return. But after taking two steps the alien decided to play games, the spasms once again twisted my foot inwards at a bent angle and curled my toes up before shaking violently.

Due to the little dystonia alien also affecting my right arm and hand, I cannot even walk with a crutch, as holding a crutch would set off the spasm in that hand and arm. Therefore I have had to resort to using a wheelchair for getting out and about. Its not a ideal option but for the time being its a realistic one. I went out shopping with my parents to get a few bits today in my wheelchair. At first I was bit anxious, I knew that now more than ever I would be stared at. However once again I found that the stares just reassured me that I could do this, that I didn’t mind. After all, if it was the other way round I would most likely also be just as rude and look.

I feel so thankful for the support and love I get from my family and friends. Without them it would  be a much harder battle with dystonia. With their love, help and support, I am able to get on with daily life and be happy. I know that no matter how hard things get, they will always be there for me. I am so thankful for them!