At a café awaiting hospital appointment, scribbling postcards

// they’re playing doo-wop music which reminds me so much of dear dead Dad. I know all of these songs by heart even though I haven’t really listened since via 8-track in a Mercury station wagon driving to Utah in 1970s

{Visual imprint seems to get all the “obvious attention” but really it smells and sounds that take you right back to a place in time at whiplash speed}

Dr says “shut it down, big time, you need rest, a lot of rest, all of it”

The above is determined by: physical examination on various ummm “nexus points” on my body // I’ve been running on adrenaline and fumes for a while (there were some reasons I had to shift out of second gear) and took a toll on my body.

My illness is a neurological virus situation so activity plus stress plus other attributes “flare up” and cause neurological physiological crashes which feels like the worst flu and the worst hangover and the worst Jetlag all at once.

I can only hang out in a cool dark room and wait it out // sleep is completely unfresh Ing and even the most minor physical activity feels like I’ve just gone 12 rounds in the ring after running a marathon

So: Canceling everything, hunkering down. Trying to keep chin up-ish.

Of course have more dentists and doctors next week.

More than a little bit Blue.

World goes on without me – moreorless #sigh #mecfs

As always, so many things I want to do… "Big things" 

but I'll keep on by doing small handy tasks which I call "lap projects"

i.e.: mending, sewing, repairing, polishing, postcards 

And hey, playoff hockey coming!

Just gotta be cognizant of task load for wifu

[Later]

Home at 土田 cottage

Grateful for:

Fantastic service at Okayama University Hospital

Stellar turnaround at pharmacy

Such kindness at the Kissaten (i gave him a special rock, he gave us flowers)

[later]

In bed w/ Kampo potions 16 & 17 + emergency valium

So we go on

[next day]

Anyhow, just trying to keep my courage and sense of relevance up for various reasons. Tried to fiddle with few projects around the today while wife and son went to tea ceremony. Took a hot bath, making my Chinese medicine tea and going to sleep (I hope) / Tomorrow’s better right?

So really appreciate the kind words from you, often mysterious but so familiar, characters in my world.

Each time I go into these down cycles, it feels “worse than the worst time” but I keep myself amused and my brain sharp by sharing my little projects with you so thanks for you

{Problem is: there ain’t no cure for this disease, none at all, not even close, loads of scientists, medical researchers, doctors etc. working on it but still…}

PS tumblr.com/gratefulhealing

tl;dr ty kind words

[Next next day… Since I’m here]

Making “fancy “oatmeal… Imported from France

With hemp hearts and pollen

Wearing a silky smoking jacket and plaid pajamas (yeah they don’t match but there’s no photos)

Will organize potions (all the packets of traditional Chinese medicine & various pills, many off label experiments)

Fold some laundry

That’s all

(maybe get that poem submitted but that would require turning on the computer so probably not)

Thanks for all the kind words, really appreciate it, feeling so unbelievably blue with a sunny day filled with blossoms outside

Bonus:

In reply to an inquiry:

There was just a big conference in Portugal specific to my illness and another event at SFU looking at related chronic and complex illness.

The problem is a virus deep in the neurological system which cannot be coaxed out causes inflammation and auto-immune response *all of the time* but becomes particularly bad with exertion, action, changes in temperature/barometric pressure, stress and other sensory triggers (including light and sound)

i'm extensively tested at a great research training hospital with comprehensive extended blood panels frequently, scopes from top to bottom, and detailed physical exams… And everything seems "fine" except for the auto-immune, EBV and either viruses, and neurological systems. 

{as it goes, I'd rather fine with sharing all my blood panels and other detailed medical information to folks who love to run through AI translation and observe for research purposes // I've got 10+ years of data sets, and just want a cure}