Healing: annotations from a feverish fog

Hi pals, Really backsliding from the recent C19 situation.

As you likely know, with #MECFS, my body deals with a massive post-viral infection load and thus an overworked immune system for 10+ years. As such, having a really hard time bouncing back. Just had to say aloud.

Me – being chronically creative/optimistic + always full of dreams, schemes and projects want to do – am again to point where have to “cross everything off the list”. I absolutely hate this as want to be making books, records, vids, revolutions. I am managing some postcards (sanity exercise).

{I know shared this before but}, my post-viral illness (lousy name: Myalgic Encephalomyelitis) & what is colloquially called “long C0vid” have become awkward epidemic cousins:

More awareness and funding recently but results & protocols? nah

The Atlantic: Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases

Only a couple dozen doctors specialize in chronic fatigue syndrome (ME/CFS). Now their knowledge could be crucial to treating millions more patients.

By Ed Yong

Also note: “ME/CFS involves a panoply of debilitating symptoms that affect many organ systems and that get worse with exertion.” sheessh

Further, blood flow to frontal cortex of my brain is reduced & immune system is fighting “everything all at once” without knowing what to fight (if that makes sense) manifesting in “brain fog” which, beyond confusion can lead to depression, especially coupled with sleeplessness :(

For a year, treated at a Okayama University hospital infectious disease program which began as a Long C19 specialty clinic and basically became a MECFS specialty unit. Taking a different approach then Drs in US/Canada or the Ayurveda treatments in India, Nepal, Lanka.

And, the treatment protocols gave me a real boost (including weekly cocktail injections and traditional Chinese medicines amongst other specific “sniper medications”) which got me going enough to do the #BCInvasion for which I am incredibly grateful.

However, the onset of this “bonus infection” in early hours of Sept 3rd have tumbled me back down the hill staring at the beginning of the game board. Didn’t *seem like* C19 as not problem with throat or respiratory systems but terrible fever, incredible pain & dehydration.

I’m mostly saying this for the record and my diary and memory after another sleepless night. Also, as a note to some wonderful folks who say “it’s just like a cold or flu” but alas, my situation is *much more* complicated. I didn’t ask for any of this & used to be invincible (well here and there, i have dealt with a consortium of medical conundrums, mostly around my guts which is *unsurprisingly* on point #gutbrainaxis.

And, following the erstwhile “community” around my illness, seeing so many people dealing with #LongCovid turning into #MECFS and fear I’m kind of taking the opposite route with this *newfangled virus* adding to my already dangerous coterie of mysterious infections. #pwME

For now, my darlings get up and about – last night I suggested a few small tasks / activities we could do together but the reality is: I’m here in bed, can’t watch anything, so listen to guided meditations for hours + brainwave stimulations, sometimes audiobooks & pods.

I’m just at my breaking point so thank you for noticing me. There’s never a great time for something like this *but* just got new routine down for picking up IchiStan from his new forest preschool riding the bus > old time trolley tram together as wife goes into busy season :(

Again, I’m not sure why am saying this besides floating out to the universe that “yes, I am scared but somehow I will survive”. I don’t expect sympathy, empathy, advice or anything… Just needed someone to talk to. {I have asked hospital for a referral to a psychiatrist}

And in my feverish waking dreams comes forth every lousy situation & bad memory of my life. Yikes! So: If I’ve ever said a cross word to you, not showed up to support you, displayed my insecurities in an obnoxious manner, acted a jerk, misled in anyway etc.

Please forgive me. I am doing my best / better every day.

PS So 3-1/2 years into C19 and the medical response is either of: a) take some ibuprofen, hydrate and rest; or b) go to the ER if it gets really bad; or c) some dubious medication that may or may not be reliable / available.

Is there something missing? Pardon me, just frustrated