I am unwell, most of the time. The drugs and the ever changing regimen - increase, slow phasing down, flare up and another increase - exhaust me. The symptoms make long stretches of any activity impossible. The last flare of vertigo behind me, I am now mostly sea sick and shaky. If I try to ignore it, I break out in sweats and nausea builds up rapidly. I can only function in short episodes and that in itself is awful. At times the debilitating and even fatal potential of this disease means I lose the ground beneath my feet for a bit. This is hard going as I am a very slow learner when it comes to being out of control. Usually, I rush into mindless distraction (i.e. online TV) for a while.
So, I do little and yet I am washed out at the end of each day.
And on and on and on...
I could describe my symptoms and my anger in more and more detail probably finding better and even clever words as I go along. So boring, so tiring, so useless.
- I can do this in the comfort of my home with pretty much all the mod cons that I need to get through the days and nights without too much struggle
- doctors/physiotherapists etc. are a phone call/short trip away
- I have decent health insurance - for the time being
- the drugs I need are readily available
- there is not much pain and I can sleep most nights
What's at the core here is that I am out of the picture, now that I cannot function in the usual 9-5 pattern I am not required, that with the
So I have signed up with a couple of volunteering projects and submitted one proposal for translation - occupational therapy really - and I made an appoinment with a legal advisor specialising in disability issues and reduced earning capacity.
I recognise that I need to be needed and that I need to look into this.