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.

Again, this is no one’s fault and I still have trouble convincing lots of people, including some old friends and family members, that i stopped playing the blame game years ago. This arvo, I fell onto the cold tiles in my unit as i tried to get to the throne but got caught short and puked on the carpet.
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.
I have now fallen so many times, tomorrow i am going nowhere at all.
My left elbow and hip are really sore – it had to the the left side!
I will ask the carer tomorrow to not do any laundry or at least not to put it to air in the ‘Richo-Reiki quiet reflection room’, even if the Flood keeps pouring forth as it may well do .. Lord knows.
So when my remedial massage therapist rocks up at 1pm, she can set up right away as she must be flat out too in these dark mid-Winter days before the Light of the World is revealed to us all once more. 
++ Que sera, sera – No stress, no worries – She’ll be right ++

weight: 70.1kg (down i think, not sure) movement: Y movicol taken: N mood: anxious not able to unwind H-S: manageable for now
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