FROM TODAY’S Diary of an Anti-Patient II
23/12/20 – Very hard day as my lovely, amazing NDIS team and management don’t know the basics of YOPD and I am severely restricted by time again running out faster than my well-intentioned team, my own body and mental resilience and the long-suffering patience of so many of my wonderfully supportive neighbours are likely to be able to absorb.
Please don’t get me wrong, today of course there was also much, very much to be thankful for. But a day that starts off with me showering hyper-carefully due to exhaustion for 2,5 hours on my own will have a certain inevitable flavour all of its own, I’m afraid.
Also i am not allowed to use common sense tried and tested means to fix this in a jiffy (which i could have done months ago).
Instead, every single shift has to start with me explaining verbally one on one what events in my view have taken place since the last time each individual carer saw me, what my plans are and i often hear from them what they have been instructed to do, which sometimes leads to me having to rearrange my plans at the last moment without any heads-up.
Dysphagia ( < spoiler alert > this is how i will die LOL ), combined with severe fatigue and anxiety and I am noticing horrendous dyskinesia; a major new worry that I can’t share with anyone as I just don’t have the time or energy to bring three or four people up to speed verbally one by one.