Tag Archives: Dystonia Awareness Week

Late for Dystonia Awareness week

20130518-200107.jpg
Hi sorry for the delay but Friday was a busy old time, but I went with my sister and got my new tattoo which It will be on display for the world to see. I really like my new tattoo as I do all my others so all that is left to do is to care for it.

My Thursdays and Fridays are as always my days I can fully cope better with my Dystonia. But just lately I’m having a disturbed sleep I don’t know why I don’t seem to be thinking about anything I just don’t seem to find my shut off button. This is just leaving me A.) tired during the day, B.) frustrated that I still have no control over my body and C.) Angry that it has stolen bits of not just my life but also my husbands and family.

My sister was up for this week and has now just gone back to her home in Devon. But I love it when she comes here but I miss her when she has to go back home as it is a long way.

My emotions are all over the place at moment as well anything sets me off just because of the lack of sleep.
I must find a way to switch off and relax.

A walk down the road

On Saturday I went for a walk down the road which would usually take 15 minuets to everyone else took me an hour but i done it. I booked a new tattoo for Dystonia Awareness Week but the earliest I could get it done is Friday 17th May (I know its going to be done outside the event but I couldn’t help it) but that hour walk has a penalty and I am paying for it. Since Saturday afternoon my left foot has done nothing but go tight and spasm (once when I told a doctor about my spasms he said all I had to do to get rid of it is smile that technique don’t work for me). The tattoo im getting is a blue ribbon with Dystonia Awareness.

I have enjoyed taking part in the Dystonia Awareness Week as all my colleagues and people I meet on the train have stopped and asked why the blue hair and nails. So I have told them all about my condition and the normal thing I get told is always ” I’ve never heard of Dystonia”. Which makes me sad because this condition needs to get recognised more and easier. My local GP had never heard of it so when I started seing her I gave her loads of pamphlets on Dystonia which she is quite thankful.

My Sister

This is my sister Sam

On a good note for this week my little sister is up visiting the family as she lives in Devon. When she visits its always special as when we get together it brings good memories with young and carefree thoughts. But now a days we talk about silly memories and what is our recent tattoos. Gosh I love my Family I know i have them for support.