Tag Archives: Sad

The twist and turns of my Dystonia

I’m still suffering with intense pain and struggling with my spasms. My spasms seem to be usually fairly under control (so they should be what with taking 30 pills a day) mostly all are for my Dystonia. So I’m still unsure why the change all of a sudden. I recently saw a picture on a friends Facebook site and it explained what the cycle is as below.

The Cycle Of Pain20130522-170046.jpg
My sister said why don’t I try meditating but I don’t know how to just switch off. She also said why not try a thing called Zentangle, it is supposed to relax you but I’m not sure if that will help. If anything it’s nice to be doing arty sort of stuff again after such a long time (since I was at school).
So here is my first try at doing a Zentangle it was interesting while it lasted.

My 1st Go At Zentangle 20130522-201213.jpg
I think I am willing to try anything to see if it works as not sure if I can cope with anymore pain.

Another wait

My time seems to be either work (now only 3 days a week) hospitals (I’m under 2 at the moment) UCL Queen Square London or Darenth Valley.
I’m not very patient person I want things to be done straight away. I would rather be early than late for anything which is a good thing but when early then comes the dreaded Wait.
My pain for some reason the last couple of days has been a lot more intense I’m not sure why I’ve not done anything different. But nothing I can do but wait.
Been given a date for UCL intense therapy sent on a first class stamp for wait for it……….January 2014 which I’m looking forward to some help (I hope) but I know it’s going to be tough. Botox at moment has stopped because it has stopped working. So yet again it feels like I’m on my own trying to deal with this strange word known as Dystonia.

20130521-083025.jpg
I know some that know me by now say you have your family and friends new and old. But I still feel so lonely with condition as its only a fellow Dystonia sufferer that understands what I / we go through. We are like a very rare breed.