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.
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.