After a lot of sorting out our new bed has arrived it is a tempura mattress which is was hoping will help my sleep problem. Well I’m sorry to say no it as not helped its quick at moulding to my body shape but no joy at helping me to sleep. On the Tuesday 3rd September I have to go and see my Dystonia specialist and then on Thursday 5th September I’m up to Guys hospital for a sleep chamber test. In basic sleep in a room with lots of wires to monitor me while I sleep. Going to be interesting. So this week will be busy with hospital appointments. Wow what fun I lead well I shall keep you informed on what happens
Well I’m just left waiting for results for the last 2 weeks hospital appointments.
Went to my GP as the chemists are having problems getting my medicine gabapentin so i was talking away and mentioned that i had a numb finger. So I also had to fit in a blood test as well because for the last 2 months I have had this numb finger. I’ve taken all my rings off and still no joy still puzzled so GP said you need a blood test. I hope it comes back all ok. But they always say no news is good so at moment no news. My lack of sleep is really bugging me grumpy is the polite word for it. Trying to stay awake while at work for my 3 days that I do is a major struggle. But on a good thing we have our new mattress coming on 22/8/2013 a tempura one I’m hoping it arrives. My foot is hurting and keeps twitching not sure what that is about. So I shall type soon take care all
Today no matter what I try and do I can’t hide my pain. My foot must be in overdrive for pain. Mmmmm what have I done different I’m not sure. Still not sleeping that good but this week I’m at Kings College Hospital for tests on my heart. Yes I have a heart cos when I’m with my hubby and family it beats a happy little tune. But if I’m honest I’m a bit worried as when I last spoke to someone they said what is going to happen is they will make me run when I told them I can’t they then said ok we will get you to run up stairs when I said did you not listen I can’t because of my Dystonia they said don’t worry we will sort it. Mmmmm what will they sort.
But I’m not giving in on this pain stuff today grrrrr.
My unwritten story
Today I feel like my Dystonia is like an unwritten story and all that is written on my life’s sheet of paper is the word Dystonia. I’m unable to move which is frustrating as well as tiring. I don’t know why I feel so physically drained and tired all I have done is sit and cry.
I so now need my holiday to arrive I know lack of sleep and pain is a very big part in these feelings.
On Saturday I tried my new crutches as usually I’m on a leg splint and a walking stick. But in a couple of weeks I will be going on my holidays to a very hot country. I don’t think I can cope in my splint as the trainers make my feet sweat a lot.
So as I said the crutches are being tried out. The only difference is so far my body is aching more because I must be using all different muscles. Also my foot stays inward all the time so I am walking more on my ankle.
All I need is a patch and I look like a pirate arh me lovelies.
I’m feeling like a pirate
I’m still not sleeping right I have been to my GP but they say they don’t want to do anything about it as they are not sure if I have sleep apnea. I seem to have a constant noise in my head which yet again was told this is a known side effect of my medication. My life with Dystonia now seems to be getting more complicated with all the health issues I seem to be dealing with.
One thing that worries me a lot is that I’m putting on people (being a burden) and its just something that I can’t change. If I can’t do something I get so frustrated with myself, which then makes me emotional. Oh dear me Dystonia you have a lot to answer for.
Sorry for the lack of writing but I’m having trouble still with sleep or to be precise the lack of sleep. I’m tired, emotional and in pain but I still have funny moments in my life that when I tell still makes people laugh or smile.
My tear for Dystonia makes me a stronger person
The other night (as usual just lately) I could not sleep so I went into my front room to look at a new solar light my hubby Steve got me. Wow when it turned on it was to say the least so beautiful. So at 1am (I did forget the time) I went into my sleeping hubby and woke him up with the new solar light on full. He sat up groaned and said go to sleep. Later in the day hubby rang said he had a dream that he was in America looking at the Statue of Liberty. I burst out laughing that maybe I had something to do with his dream.
If I think back to how I used to be and to now I know my Dystonia has changed me for better or worse I’m not sure.
Dystonia does change us all
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.