Note: tomorrow is check-in at *big city hospital* with neurologist at which point I’m going to talk about transferring my records/file to #Okayama University Hospital where there is a program for “long c19” & #Mecfs / I have 9 years of tests, treatment notes and modalities to contribute.
(Of course) at this point,I’m not expecting anything “new or miraculous” but desperately need to take at least a half a step forward as this last few months/days, actually this year, has been really hard getting above baseline #mecfs (I bounce between levels 6,7,8 if you’re curious).
PS here’s someone’s (not mine) nice blog post about “10 things I wish people knew about MECFS”
[update] The big hospital was efficient, tidy and quite vast with that sort of HVAC hum and fluorescent lights and echoey hallways that are a bit tough for me but usually a hallmark of modernity. Anyway, got the referral letter, hooray! + Dr is going to call the other doctor and there will be a fax involved somehow.
I also got some other new medication for pain/sleep and so far it’s been quite pleasant (keep in mind, I am very judicious about avoiding heavy duty meds as I’ve gone down that route before and I prefer to keep my brain even if there’s an element of pain).
Oh and got one of the egg salad sandwiches with the crust cut off! Such a luxury. Thanks of course to my darling for doing all the driving / stickhandling.
PS I found my brown leather shoes which I wore but did not take a photo so you’re gonna have to believe me.