Healing: feeling discouraged, wiped out and canceling everything (but fck me, im trying)

Before: Note to self, tomorrow is neurologist check in day at the big city hospital so remember to get a good night sleep #ha {and it’s a good thing you’re laying down right now}. #okayama #mecfs #pwme

Sometimes it gets lonely feeling lost but having a book (and my family waiting) is the key

^^ [Unrelated Edward Hopper painting]

Wishing you all high-thread-count sheets, ideal assortment of pillows, and comfortable bed for sweet dreams nights tonight. I’ll think about my outfit for tomorrow hospital visit. gn wonders

Next day: At #Okayama hospital for periodic check-in for MECFS >> it’s more “administrative“ and re-upping some mild prescriptions as really “nothing can be done“ >> nine years in this week :( and feeling wiped out – and bit blue – about it all

#pwme #shoes #blues #millionsmissing

Later: Gosh, I’m just emotionally drained from it all… Got through it, now waiting to pick up the ‘scrips, might’ve cried a little bit in the hallway… It’s not a calm place although they try. Yes, I am delicate and sensitive. There’s just really “nothing to be done”…

Hopefully a long bath tonight and a rest day tomorrow. Doing my best, I should do a lot less than my best / Wonder if that Obi-Wan Star Wars series comes out tomorrow? And which hockey games are on? #PositiveThinking

Alt text: A rather tired looking fella with fluffy hair, sharp blue shirt, clubman glasses and a cheap mask stares – with no spark in his eye – to an off-center camera. Seems to be wondering about some thing. In the background is a sort of dome stadium something something.

So: Have canceled everything: appointments, trips, engagements, circumstances, obligations (aside from a significant consulate appointment for which they assign the date/time). Wiped out from it all >> try “not trying” for a while, see how that goes :(

dear young lost

While waiting in the parking lot for prescriptions: Introducing Ichiro to some “vintage / classic rock“ while hanging out in the van / it has this foldout DVD screen dealio. Also, there’s a lot of smoking in this performance & dang young handsome Kurt, so much we all missed but my heart aches for his sadness.

en route to seitai #Grateful

Previously: I call this look: Amish renegade / on the bus, heading to medical appointment blah blah blah the same the same the usual the same #MECFS blerg (just keep going davey, just keep going)

Montage: views from the elevator where the fellow in the Kojima painting on the calendar looks kind of how I feel, also magnet say “hi“

Note: “When it comes to pathophysiology of ME/CFS {~} signs point to autoimmunity, altered immune signaling and function, cellular energy production problems, neuroinflammation, vascular problems, an imbalanced gut microbiome, and malfunctions of the autonomic nervous system”

Additional note: was recently “ME awareness month/day/campaign” and I shared a bunch of things on the Twitters if you’re curious >> there are lots of hashtags and lots of conversation about ME research in regards to erstwhile “long C0v!d” – *at least* folks who are much more scientific minded than me are articulating clear positions, theories and what not about this debilitating condition

Whatcha think?