Tag Archives: Alone

Things happening

Well on Tuesday 3rd September I had an appointment with my specialist and was pleased with how my foot looked good but then he be grabbed it to see how much movement I have which is not a lot but its better than what it has been. But his man handling of my foot managed to wake my Dystonia monster and the pain for the rest of the day was that bad all I wanted to do was shut down and try and sleep through the pain until it was bearable. But as I’m not sleeping very much I’m not coping with the pain. I am hiding it from everyone and putting on a brave face.

Then on Thursday I had to go to Guys Hospital to be monitored to try and find why I am having problems sleeping. After an hour I was ready to be monitored for the night

I’m wired up to see why I don’t sleep20130911-150615.jpg well the night as always was a long one with the wires and a hot room was a struggle but all I can hope is I didn’t embarrass myself. So I am awaiting those results now. I’m finding I’m not coping very well close to tears but hiding my feelings so I don’t make people worry. So I thought I would put my thoughts on here.
My life with Dystonia feels a lonely one.

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.

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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.