Tag Archives: M.E.

Healing: a declaration, about going & becoming ~ Phitsanulok, THA

a certain angle required to unlatch the door to everything which exists “out there”

What follows comes from my erstwhile “Healing Journal” – written/compiled on a foggy meandering journey to various countries visiting all manner of hospitals, clinics and exploring various healing modalities and technique dealing with #MECFS.

Please watch the “Healing Ramble, introduction” video for context on this series.

This entry from Phitsanulok, Thailand  Oct. 2016 riffs in between 2 extended parts of the trip while flashing back on a few parts which we might get to (chronology be danged).

For reference, its now June 2021, i live in Japan, am stable if far from “normal”.  Carry on.

sure, break the glass but the door is still locked

Phitsanulok, Oct, 2016

I wrote this declaration upon waking up,

“This past summer after literally losing my mind {long story, didn’t end well, not recommended}, I decided to step into the abyss, bravely, intrepidly and without compromise.

While holed up at a mountain cabin while chaos swirled around my life, I’d listen to the messages from records stashed in a basement 25 years before like an unintentional time capsule. I hotboxed my beloved old VW bus, which is now a sauna, where so many memories – happy memories – happened. I reunited with charming characters from my past and even better, met their children who were adults, moreso than me anyway.

Then with a solid head of mushrooms and MDMA (therapeutically), a plan came to me. So on this psychedelic carpet, i clicked enough buttons on the internet to purchase an abstract variety of plane and train tickets to send me around like a manic board game in such of a new flavour of truth and reality >> Salt Lake City to Las Vegas to Pacifica to Chaing Mai and now to this rather-anonymous-work-a-day city Phitsanulok where I’m practically the only foreigner in a city mourning the death of their beloved King. I’m finding comfort and solace and healing.

In scant days, I will leave again into (for me) un-charted territory beyond what science and reason says it’s capable of this haggard body, but I refuse to accept anything but finding some sense of joy.

I can live with pain, i accept this (i suppose, begrudgingly but practically), but i cannot accept living without my brain and without my heart and soul. I am born to give, i exist to share and i am empty without these.

Without a safety net, without an emergency escape route, without language skills, without the strength to punch my way out of a wet paper bag, i built a tiny universe and painted the walls just the colour i chose.

So, who will return to the West Coast on December 6th? Will i return? What will i look like? Who will i be? I am indifferent to all of these questions as the destination is simply a byproduct of the journey.

The journey is me and I am the journey, brick by brick, stride by stumble, i will gently apply the mortar to rebuild, to renew, to replenish and regenerate from the very mitochondrial cells outward.

Whatever the results, it will be me.”

all the colours are possible, sometimes, i suppose, beyond the black… “let’s imagine” i suggest

See also: Thunderstorm in the Crash Years & Story of a bath and more to come… next stop: India, come along

Healing: Story of Pitsanuvej Hospital ~ Phitsanulok, Thailand

Rolling around Pitsanuvej Hospital, Phitsanulok, Thailand. I felt very cared for there, thanks to my “handlers”

What follows comes from my erstwhile “Healing Journal” – written/compiled on a foggy meandering journey to various countries (Pacifica, Phitsanulok, Cochin, Pokhara, Dikwella/Galle…) visiting all manner of hospitals, clinics and exploring various healing modalities and techniques.

Shared here more-or-less unedited for posterity (whatever that is) and to shed light to those struggling who might come across this riff. Please watch the “Healing Ramble, introduction” video for context on this series.

This entry, from Phitsanulok, Thailand, late 2016 was written in the weeks following – hence possible tense shifting. (Finally) organized and published May-June 2021 – i now live in Japan, am stable if far from “normal”.  No comments, sympathy requested or accepted. Carry on. 

Phitsanulok, Thailand, Oct. 2016~

[visited this hospital 4 times 2016-18, these notes are from the first 2 visits]

Intro: My various medical diagnoses (central sensitivity syndrome, fibromyalgia, chronic fatigue syndrome / M.E.) are generally diagnoses of elimination meaning, (in brief): finding out what it *isn’t*, and if every other possible thing can be eliminated, these are your diagnoses (given the symptoms etc. blah blah blah).

While there is extensive research for specific bio-markers for these diseases (thanks Open Medicine Foundation et al), comprehensive universal, diagnostic methods do not currently exist (and yeah i know there are loads of folks who have alternate theories, whatever, write your own spiel).

waiting for yet another bus in the rain in Vancouver – was all too much for me. holy anxiety and stress and confusion

While in my [ed note: former] home in Vancouver, Canada, these tests are certainly available, I found the process to be an extremely laborious – ergo: after waiting for specialist referral appointment and meeting, i would be sent for a couple of tests requiring a bus ride to the lab, waiting, dealing with all the commotion and pain (yes) of testing and then following up with the doctor who wouldn’t necessarily give me the “science” behind the results – just a “its fine, nothing to see here”.  The results were *evidently* available on a website, which I found impossible to utilize, and the experience overall was very draining.

As such, I compiled a list of all tests I wanted to undertake, and sought a hospital at which I could do all and “own the data.”

own your data (in a cute folder!)

My thinking is, “the sooner I can eliminate all other possibilities, the sooner I can get on with a proper healing regimen and be assured I was doing everything I could to feel better and heal my body etc.”

getting sensors on for an EEG to check my brain impacted from various injuries and concussions

Continue reading Healing: Story of Pitsanuvej Hospital ~ Phitsanulok, Thailand

Healing Ramble: #MECFS journey to Thailand, India, Nepal, Sri Lanka and onwards

Kind of nervous about this project but somehow it feels like a good (or important) idea so here we go… &/or just watch :).

I deal with #MECFS a complicated complex and chronic disease (see below). 

After diagnosis eight years ago (2013), I was kinda ground-up by then-local (Vancouver, Canada) medical system through challenging and ill-advised therapies, a litany of dangerous medications and laborious uneventful tests. Plus my entire life seemed to fall apart… ugh. As such I set out on a meandering journey seeking to figure out what was up with my body and brain and try to find a way forward. Continue reading Healing Ramble: #MECFS journey to Thailand, India, Nepal, Sri Lanka and onwards

Healing: Annotations about M.E. (vis a vis Cvd19 long haul)

Healing Peace from yer ole pal / Still M.E.

(from a Twtr thread, here for posterity) note: find a better way to archive all this if possible

Healing Journey: Update, Summer 2018

“Unrest” Documentary about CFS-ME

Dave gazes at Rodin's interpretation of the Gates of Hell from Dante's Inferno
Dave gazes at Rodin’s interpretation of the Gates of Hell from Dante’s Inferno

Finally up worked nerve/courage to watch @unrestfilm – Cried & laughed + noted im not alone. So much familiar: documenting, crashing, trying *everything*, endless Drs, so much confusion/suspicion/loss. 5 years along #cfsme & #fibro. Was invincible dynamite before.

Also, was funny in the movie to see her obsessing about mold and putting up a tent (I did this), making bone broth (which I did obsessively and one of my former charges now has a bone broth company), all the supplements (which I spent so much money on!), and all the “superfood“ smoothies/drinks/concoctions… Oh, and also all the Chinese herbal remedies cooked up in a big pot making the whole house smell crazy weird.

PS Unrest the film is on Netflix, iTunes and other places.

Facing Chronic #story #riff

The thirteenth Doctor concurred with nine of the others… “Get your affairs in order, apply for disability, consider getting a cat.” After which she noted, as most of them do, “You know this syndrome usually affects women, in fact 90% of the time” – my eyes roll inadvertently, i don’t care if she notices. She sends me along with assurances that the extensively-noted side “benefits” of the basket of prescriptions “don’t happen to everyone after all.”

Ugh. I am toxic and confused.

Walking to a borrowed home, I rest on every bench, imagining my one-life revolving around reruns of M*A*S*H at 6 and 6:30, Hogan’s Heroes at 8PM. Maybe I’ll start watching that show called Seinfeld I missed in the 90s. Was that the 90s? I count years backwards to figure: there was the Japanese sojourn, the time in Micronesia, grape picking in Germany, hitchhiking Australia…”

I see myself all in reflections: I stoop, I am slow, I resist definition but must acknowledge a choice… I can “sit still” or I can “run away”. Ergo: burn out or fade away.

So, I write a will (for the first time) and buy a one-way ticket to a distant city I’ve know nothing about.

Declaration: upon waking up

I wrote this declaration upon waking up…

This past summer, after literally losing my mind, I decided to step into the abyss… Bravely, intrepidly and without compromise.

Holed up at a mountain cabin while chaos swirled around my lives, I listened to the message from records from decades ago, I hot boxed my beloved bus were so many happy memories happened, I reunited with charming characters from my past and even better, met their children who are adults (moreso than me anyway), then with a solid head of mushrooms and MDMA, this plan came to me.

On a psychedelic carpet, i clicked enough buttons on the Internet, to purchase an abstract variety of plane tickets to send me a round like a manic boardgame in search of a new flavour of truth and reality.

Salt Lake to Las Vegas to Pacifica to Chaing Mai and now to this anonymous city where I’m practically the only foreigner in a city mourning the death of their beloved King, I’m finding comfort and solace and healing.

In scant days, I will leave again into uncharted territory, beyond what science and reason says is capable of this haggard body but I refuse to except anything but finding some sense of joy.

I can live with pain I accept, but I cannot accept living without my brain and without my heart and soul. I am born to give, exist to share, and I am empty without those.

Without a safety net, without and emergency escape route, without language skills, without the strength to punch my way out of a wet paper bag, I have built a tiny universe and painted the walls just the colour I chose.

Who will return to the West Coast on December 6? what will I look like? Who will I be? I am indifferent to all of these questions as the destination is simply a byproduct of the journey.

The journey is me and I am the journey. Brick by brick, I will gently apply the mortar to rebuild, to renew, to replenish and regenerate from the very mitochondrial cells outwards.

What ever the result, it will be me.

Old vs New (notes re: self)

Renegade adventurer v. Eccentric gentleman  

Remote and natural v. Walkable villages  

Ragged beards v. Straight razor shaves and mustache  

Hiking shorts and rock t-s v. Tailored suits and fitted shirts  

Free conference pens v. Disposable fountain pens  

Craft beer v. Water and tea  

Fat doobies v. Unfiltered cigarillos  

Freeverse v. Lyrics

DIY repairs v. Takeout mending  

Self-service v. Delegate  

Wash n wear v. Laundry service  

Late night rock v. Early acoustic  

Take away street food v. Long patio lunches  

Midnight movies v. B&W documentaries / matinées

Waiting…

Challenges of healing include crazy wait times for referrals to specialists and clinics. Called a major specific clinic in Vancouver today to check in on progress:

them “when did you submit referral?”

me “oh more than a year ago”

<hold>

“we found you, yes you were referred May 2015, so that means we’ll be able to see you in…. let me see… May 2017.”

“um thanks”

“we’ll call you then”

#optimism #challenge

##

Comments and annotations:

to Scott Orr: each province runs it slightly differently but, one of the biggest problems is lack of Drs as they can probably make more elsewhere the problem starts there. There are many more efficiencies in the care now (shared xrays and digitized records) for “normal” stuff (breaking a bone) and great programs for critical illness (cancer centres) but i am an odd case and odd cases often slip between cracks. in this case, its a new chronic and complex clinic inside a hospital so its an odd situation all over. The other critical solution is integrated care where mental and physical are not treated entirely differently. Also respect for alternative therapies… but like i said, you break and bone and dang its easy and no cost. But i am weird in more ways than normal :)

to Tristan Schon: truth man, my first year or two of treatment for this conundrum (ME/Fibro/CFS/etc) was all medications which just about turned me to jello, and group cognitive behaviour therapy which managed to freak me out more. The best results ive had (meaning relieving pain and making a bit of brain fog go away) is soaking hot mineral springs and getting Thai massgae where they bend and twist ya. Otherwise, phoenix tears (rick simpson thc oil) and CBD capsules sorta maintain me (though i’ll admit to the occasional diaxapram when i cannot leave the house due to anxiety) – its the last vestige of a formerly absurd scrip roster.

Also, if i’ve learned anything medically through this it is: the brain, gut run the show and the body mostly follows along. You can patch up the body way easier than the fixing gut and/or brain. As a result of the weakness and fogginess from the Fibro and scrips, i’v fainted full out a few times with 3-4 significant head traumas which just complicate the whole thing. Like makes harder to separate what’s what and Dr’s (kinda understandably) cant be awesome at everything.

Etc: Just a note to say, “dont worry about me” i am stick handling the medical system with frustration and annoyance but im happy to be alive and realize how far i’ve come. I live in constant pain and brain/cognitive fog and i require lots of rest but my illness is “weird” and not as easy to fix as a broken bone. Sometimes, i just need to holla aloud and each of you are very kind for checking in and offering support and advice.

Riding bus bound for appt…

Riding bus bound for appt w/ holistic nutritionalist to learn more about anti-inflam food & thwarting leaky gut 

#healing #Grateful #sickofit

Yup, I stay pretty busy…

Went shopping today. Got a new toothbrush. Yup, I stay pretty busy. Then made greeting cards to mail in time for Lunar new year. Whew.