Category Archives: Healing Journey

journals, notes, musings and the like about dealing with a consortium of complex and chronic illnesses (fibro/cfs-me) – yeah not the most fun category but whatev

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”…

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

Healing: Journals and a Postcard

sorry, i guess – no not at all

As I’m stumbling along on my “healing ramble” series (please watch the intro video for overview and disclaimers, not unusually, finding myself a little bit overwhelmed with all the artifacts, memories, items, even data, to share. So, rather than obsess over it just putting it all out there, even if it’s a bit redundant.

The next “real” dispatches from the series include my “tips for travelling with a chronic illness” (which is rather practical and logistical stuff), plus another entry from Sri Lanka, another from Nepal, a tough one from Pacifica California, more from other places i forgot and maybe I’ll even fill in the missing gaps from Adelaide Australia, Austin Texas, and crossing Canada looking for a home.

In the meanwhile here are the fronts of some notebooks and a postcard which allude to some of the above.

Continue reading Healing: Journals and a Postcard

Healing: Story of Dissanayake Ayurvedic Hospital ~ Galle, Sri Lanka

not really at the hospital but still captures the spirit of the scene

Memo: 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.

Importantly, this is not meant to be a travelogue or creative writing exercise, just laying out my experience as it came to me. I may include some links to other projects or creations that came out of this, maybe… I’m not there yet.

This entry, from is from Galle Sri Lanka, late 2017 and written in the weeks following. It’s now April 2022, i live in Japan, am stable if far from “normal”.  No comments, sympathy requested or accepted. Carry on. 

Dissanayake Ayurvedic Hospital
Dissanayake Ayurvedic Hospital: Sign

Background: Along my healing journey, I received treatment at Dissanayake Ayurvedic Hospital in Galle, Sri Lanka, a government-run, pay-what-you-can facility.

I attended this hospital for Ayurveda treatments for some weeks during Dec. 2017-Jan 2018 and was treated by a kind practitioner called Ruwan. I also met with a wise Doctor who recommended I do a longer in-patient Panchakarma program here, but… some life situations changed and i didn’t do the program. I saw the rooms and talked to the doctors and while it was very spartan and not cozy, the staff seemed to be very intent on their practice.

Dissanayake Ayurvedic Hospital: Lobby
Dissanayake Ayurvedic Hospital: Lobby

Routine: Mr. Prem dropped me off via his Tuk-tuk (he introduced me to the facility in the first place), i then went to a window to announce myself (to everyone’s great surprise!) and then sat in the waiting area. Mr. Ruwan would come back from lunch, i would strip down to underwear and lay down on a wooden table (covered with a vinyl sheet) in a shared room with folks coming and going for massage with loads and loads of oil.

Dissanayake Ayurvedic Hospital: Treatment room
Dissanayake Ayurvedic Hospital: Treatment room
Continue reading Healing: Story of Dissanayake Ayurvedic Hospital ~ Galle, Sri Lanka

Healing Ramble: Pros & cons of living or seeking treatment abroad with a chronic illness

Memo: Above 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.

Importantly, this is not meant to be a travelogue or creative writing exercise, just laying out my experience as it came to me. I may include some links to other projects or creations that came out of this, maybe… I’m not there yet.

This entry was in Pokhara, Nepal, early 2017, written as a letter to someone i met along the way facing health challenges of their own. I never heard back but whatever…

(finally) organized and published spring 2022 – i now live in Japan, am stable if far from “normal”.  No comments, sympathy requested or accepted. Carry on. Note: There’s another post with a review and brief introduction to Ayurveda Health Home as well. 

daveo

Dear [Redacted],

I’ll speak frankly and candidly from my own experience, all of us are different of course – for the record I am at an Ayurvedic clinic in Pokhara, Nepal.

Background:

a medical diagram of me

Like you, and most everyone else with a chronic complex medical conundrum, I’ve spent all the time since my “trigger event” seeking out various treatments.

From overmatched GP doctors, to the anticipation of finally getting into see a “specialist” and the disappointment crash following when they still have more answers than questions, spending everything you got to see various naturopaths, chiropractors, reiki practitioners, massage therapists, nutritionalists… with little to no long-term benefit, spending sleepless nights reading medical abstracts & journals as though you understand them, seriously considering going in significant debt to go to a “fancy famous” hospital, putting up with family and “friends” advice (occasionally well-meaning) but always useless and often completely disrespectful, using up every bit of energy reserves on a daily basis just to get through the day and hopefully feel some vague sense of satisfaction or accomplishment when really you’re just spinning, seeing the stress it causes on lovers and partners who try their best to understand but crack under the pressure from time to time, and acknowledging your own mental well being — which starts to fragment from exhaustion, frustration and so many (often professional) people telling you that it’s “all in your head”.

I made a penciled flowchart of my various options before I headed out this last time, ergo:

(very frank) life options

Shall I do just what the Western doctors and insurance companies want me to do hide myself in a rainy apartment with old folks down the hall filling the lobby with smell of soup?

Go down in flames with late nights of parties and decadence pushing myself to the very limits knowing that it doesn’t really matter if I wake up tomorrow (I’m just not that self-destructive)?

Or, beg borrow and steal to see the litany of well-meaning but wholly ineffective naturopaths, chiropractors, Reiki practitioners, nutritionists blah blah blah? (I have largely done this and have fallen deeply into debt as a result)

Or do I continue this sorta strange wandering life of seeking healing in foreign lands while playing the “cat and mouse” game with the insurance thugs who wish to control me? I guess this choice won for the time being so i’ll break down the problems in the categories:

  • Financial (the cost of simply living coupled with the cost of getting treatment)
  • Treatment (access to reliable and useful services when you need them)
  • Climate (some of us do better and different weather, as well the “political” and social stress of environment)
  • Community (the first year or so it can seem that you have a support network but as years go on, this breaks down and begins to vanish having a net negative affect)
Global Brigadoon Index ™

My experience:

My “western diagnosis” is fibromyalgia and chronic fatigue syndrome/M.E. This all started in May 2013 so I’m coming up on four years. My diagnoses usually affects women and there is support groups etc. have been primarily women, bless their hearts.

Continue reading Healing Ramble: Pros & cons of living or seeking treatment abroad with a chronic illness

Healing: Ayurveda Health Home, introduction + review ~ Pokhara, Nepal

Memo: 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 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.

(also riffs already from Thailand, India etc + tips about pros/cons and how-to logistics coming…)
welcome gates in Pokhara, Nepal (note they have a few facilities in Nepal

Visits to a few wonderful, unique, intelligent clinic/hospitals in India, Nepal and Sri Lanka played the most critical role in bringing me “back to life” from MECFS – no, i’m not healed but i manage. Anyhow…

In this dispatch, i’ll introduce Ayurveda Health Home in Nepal – they operate clinics in Kathmandu and Pokhara where I did my panchakarma 3 week treatment cycle. [Update: now another facility] and are a German-Nepal partnership company and bring the best of both cultures into the operation.

me and the esteemed Dr. Rishi (rip) so much goodness – note my custom hemp trouser, Topi hat and Thai-made custom shirt

The facilities were fantastic – simple and sincere and functional, the staff was next level skilled & diligent, and the skill of the key medical officers – led by the brilliant, international reknowned Dr Rishi & my lead (the coolest and kindest) Dr. Rumee – empathetic, knowledgable & superb. 

view from my darling room in Pokhara
Continue reading Healing: Ayurveda Health Home, introduction + review ~ Pokhara, Nepal

memo: foggy, dark & french press (+ compost & distortion)

In bed dark room, head spinning, can’t quite a drift off so fiddling with archiving miscellaneous items (books, portals, calendars) at my creative life archive.

Oh and look, new metal French press and gooseneck kettle for pourovers.

Also got a machine for making soy milk.

Meanwhile, realized I am enjoying four beverages more or less simultaneously.

[update] Next day: Rough night but got up and played with shovel and wheelbarrow & moved some compost around from one pile to another just to break a sweat and try to shake out the cobwebs. I’ll be OK eventually, I always am, but the present tense is always tough #MECFS

Had my sidekick assistant in his tie-dyed with his own shovel helping me out :)

Then I went out to the barn studio and ink stamped little signs to put on the metal brackets on my flat file dossier cabinet. While listening to a Bob Mould 7LP set I got – some how – for like $50! #Distortion

Diary: March, a (slight) bounce

March /月3 re-cap, a (slight) bounce

improving the campsite and a small journey to the sea. Maybe starting a band – wrote a song “goat milk latte” in the bath last night – note to self: buy electric baritone ukulele

friday im in love (with an arborist and a kiddo named Stan)

flipping all the calendars in the house today – should be keep me busy for a while – we have a lot of calendars (get so many free in Japan) – later i use for scrapbook paper

wanna;

catchup documentation of recent postcards arrived from Gifu, Palm Springs and Woodstock

also meaning to share recent Beat videos with Beat Generation and JK, AG, GS groups (could some one do this for me so i don’t seem like im pimping my own dojo?)

wanna call my pal to chat about her daughter’s wedding

maybe a video/round-up from Shimane trip

usual dishes and laundry, compost

will wait of garden box and bird house projects til weekend

must organize supplements for next fortnight

picking Ichi up early, going to seitai w/ wife

dinner with parents at home (approx 2 m away)

oh gotta bring the freezer (delivered for $15-ish 5:30) inside {we’re putting electric in for that, plus adding dishwasher, more light in kura and starting research for solar panels}

i’ll do some subset of maybe 3 of the above, maybe

ps watch the video above by Jeff Nicholson, Canadian in Japan, less than 100K of us (+ read my diary leaving India}

pps just brought in the milk and eggs delivery so added that to the list as a finished item

A partial assortment of the calendars in our house. There are others. “Time and tide wait for no one after all.”
(Unless you just disregard all of it and realize time is just a construct and malleable, i.e. don’t mind which day it is and don’t go to sea, in which case you’re fine)

oh i didn’t even mention getting a soy milk making device, such days

Addendum

Supplements sorted

Unexpected lunch with wife

Posted some internets

Dishes washed, laundry started

Packages arrived (pretty much daily though)

Calendars turned (duly documented) 

Tried to call friend but missed her, exchange messages nevertheless

Took out compost

++ opened packages including: books, French press (glass lined, steel shell), gooseneck water kettle

+ Bob Mould’s five vinyl “distortion” box set – somehow on the $50 and I’m not sure why or how (maybe I should double check the receipt?)

the freezer is still outside

Seitai done >> Gonna lay down for a bit #MiscellaneousUpdate

Improving the Campsite (odds and ends diary)

+ Improving the Campsite, odds and ends from Tsuchida Cottage +

A little bit lost – &/or found – of late, but the dishes are finished, laundry started and the rabbits ointment is applied so saying “Hello. How are you?”

Plus a few other life annotation about *improving the campsite*, curbing ambition with gardening, wild boars, geolocated signpost, illnesses, funeral, taxes – goodtimes!

Also noting that i’m putting “Postcard as a Service” shop on hiatus, cancelling everything, tidying up here and there and attempting to find a little bit of peace in my aching head with yard, garden and barn projects.

Peace to all of us.

Diary: notes from the slow lane (curling, quiche, errands, taxes & flowers for Mom)

This disinter-mediated and somewhat timeshifting rundown of miscellaneous annotations and notes from the last week may not make sense entirely but put here for the historical record as you know, this is a “entire life site“.

Oh hi, just waiting with my boots on

Certainly not comprehensive, vaguely chronological, tense shifts and aggressions as usual. Summary includes: hospital, allergies, easel, coat rack, quiche and curling (and a payphone just to prove it’s actually me) + mention of funeral (heavy) & taxes.

Rally up for hospital time

Feb 21 off the hospital for blood, CT (re: inflamed spleen?) and usual check-in with neurologist. [Update: I am here at the hospital now assembling these notes in case you were curious. Carry-on.]

[Update: spleen doing alright / better is seems – information was probably really heated to a cute situation. Cholesterol is high, yes yes yes I know, working on that… Reduce big fish/meat/milk, more chicken, small fish, keep eating lots of salads, veg, olive oil, reduce nuts… All rather bewildering but on my quest to live well over 100 years old, all relative and relatively important]

Feb 20 So recently, amongst my other health challenges, I’ve been breaking out with strange allergic reaction but my arborist wife has figured out that is allergic/reactionary to eucalyptus wood. We have a stash in the firewood and even a puff of the dust causes me to turn red. Weird.

(As you mebbe know) been “deep in the well” with a really rough patch with my usual & not-usual illness… It’s really mentally wearing me down. Hard to do much of anything when I’m crashed & my scant functional time is spent trying to be supportive useful dude around the house.

Feeling overwhelmed and buried in “things on the list that didn’t happen in the last six weeks“ and turns out we’re bound for a a funeral tomorrow and then I’m back to the hospital on Monday.…

Sure, starting to improve the last couple days though & so eager to do some creative projects, I got excited yesterday putting up a coat rack for the wife’s work clothes. Must remind myself that patience and time are my allies. Importantly: I will point out that wife did all the important parts for putting up said coat rack, I basically handed her drivers, screws & level + offered words of encouragement and support, but still, a bit of dopamine.

However (and) yesterday moved my new/secondhand majestic Rembrandt easel up to the studio lounge and my adorable protégé gave it its first testing. These two make my heart leap and spin every day <3 (They went to tea ceremony).

Portrait of an artist as a Young Man (also note various art and hats)

So curling is over, allergic reaction subsiding, table moved and tatami mats replaced (finally, since Christmas) so I’m gonna take a rest for a while before going to a funeral at 16:30 and then big hospital tomorrow. Nothing but good times. It’s a glamorous life.

Also we finally moved the extra table which has been in the kitchen/dining room since Christmas back into the storehouse barn (where it will soon serve as a multipurpose table for making paper, repairing ceramics with gold (kintsugi), other arts & crafts) and put the tatami mats back in place. Ichiro was very happy about this as he likes to hang out and play here and it feels like we turned a metaphorical page.

Note to a pal regarding yuzu jam, “Think of you often as I put your jam which came in a tahini jar, along with tahini, on sourdough rye crackers as my *little pick me up“ snack.*

Curling: Fantastic final match between Scotland and Japan. Scotland just didn’t make any mistakes at all and ended up with some big ends. My Aberdeener Granny must be smiling. Im very happy for both teams. PS remembering the last Scottish team to win gold in #SLC2002 with brother Dan.

Im really enjoying watching Japan women’s team with their bright smiles and great communication.

I tried curling once back in Canada where it’s national obsession & it’s fantastically difficult at first. Rocks slide so fast and everything is so slippery! But beer afterwards…

Feb 18 Game on! 21:05 JST 2/18 Japan v Swiss women’s curling semi-final olympics. Japan had lost to the assassin like Swiss in the final game of the round robin but came back with a clinical match to advance to the gold medal game. Switzerland, despite their great tournament record, fell in extra ends against Sweden.

Feb 17 it’s Mom‘s birthday, I miss her so much, wife brought flowers and we sang to her with her picture on the table. Made her “Arabian spaghetti“ which I’m not sure is really a thing but it always works for us… basically: spaghetti with minced beef and possible onions and garlic, atop the spaghetti along with yogurt, optional pinenuts, parsley/green onions. Refreshing, easy *and* we are making our own yogurt at the house which Ichiro loves.

During the day however, the two of us went out to do some errands in the city, I’ve been really months since we’ve done that.

Grillmori’s “new location” is small, fabulously well designed with elegant minimalist simplicity featuring great attention to detail. Lunch has choice of three quiche, comes with soup and salad. Simple Zen.

Specifically included:

  • optometrist visit still trying to get glasses dialed in;
  • iPhone repair shop to put a new battery/screen into an iPhone 5 to make another camera to use around the studio;
  • lunch at one of our secret cafés for quiche/soup/salad and coffee and strawberries and cream (pictured ^^;
  • various tasks around the big shiny loud fancy fragrant department store Tenmaya >> drop some jewelry off to repair and look at some new fancy pots and pans (didn’t find exactly what we wanted).
  • afew things at a little kiosk from one of those guys who does shoe repair, key making, videotape transfer, hanko stamp making etc. (doesn’t sell pocket knives however, just feels like he should)

While in one of the corridors which seems relatively unused and filled with benches (rare) with no one sitting on them, spotted a nice payphone just there on the skyway, waiting to be used.

Will be around a month for a couple necklaces to be repaired but also remembered Ryoko’s stories of visits with her grandma buying special tea cups. Oh we bought some fresh hand towels (we’ve been putting away all the rags and towels which are 100% cotton or similar for our paper making project this summer.)

Oh also seitai treatment (great but hard to explain), definitely the busiest day for me since before Christmas.

Feb 16 Grumpy. Starting day on hold with Canada Revenue Agency for :50 min so far. Occasional messages saying “getting towards end of our business day so we might just not answer”. Presents existentialist conundrum. Are you there? Is anybody? Am i? {music plays on}

Ugh so disheartening! Ive tried to be a cub scout on all my emigrant / non-resident / cpp-d file & keep getting conflicting info & now a bill which just arrived with already $221.61 added on. No good deed goes…

I managed a coffee fresh up & p33 while on hold / thats an anxious maneuver. I did sharpen my pencil & jauntily) tucked over ear with pink eye mask. Such serious!

Pencil ready (but wasnt needed)

Yeah beleaguered and disheartening / im trying to be above board and dont get any sorta support :( 1:19 on hold – got up early to do this and have other tasks looming > giving up. Told expected hold time :10-15 at beginning.

I’m really trying my best, I send them letters, faxes and all of it and getting a statement with already interest tacked on is a bit of a kick in the groin but we carry-on, we carry on.

Switched tasks to the slightly more satisfying washing dishes and folding laundry. Decided I will communicate with CRA exclusively by fax moving forward.

Diary: Leaving India ~ rapidly, in a fog (Nov. 2016)

Nov. 29, 2016, 9:04 AM, Auroville, Tamil Nadu, India – i ordered this coffee and turned on phone…

Note: transcribed with light editing from my scribbled journal made in “real time” as always more to say but this is what is there is – read between lines, follow rabbit holes to fill in the blanks if curious. (will add more about Auroville at some point and more about dear Mom’s passing including my letters to her and obituary within)

Afterward: includes notes from the interlude

Auroville, Tamil Nadu, India – 9:04 AM, Nov. 29, 2016

After a visit to Townhall and Mathrimandir, near the visitor centre, hot coffee in small brass cup, turn on the pocket robot and (oddly) a barrage of messages on all channels, so many – I am confused (hithero ignored) – then email/every-messaging-channel – I read the first line, baffled but know something is terrible! so try to call brother Anders.

the day before, visiting golden dome dedicated to motherly love #sigh

Calls (over dodgy internet) are made and calls are dropped again and again after 3 words – finally, i hear “what” and say “Chennai airport, open the envelope, four hours” fast – go! {The envelope in Vegas contains access to Dashlane app which has all passwords credit cards and passport and a friend who is so good and helpful from home HQ.}

My location wasn’t on itinerary and no matter, no coverage anyhow. I was on my way to a post office to mail a dossier to Nick Bantock and then to the golden temple of meditation and somehow it all happened.

accomms in Auroville, met folks from many countries, enjoyed activities after a confusing start. i could *stay* here – i have skills

Hustle back to “Joy Community House” breathlessly explain. Return card to townhall. (Kind ladies hug me and give me “rescue remedy” in a glass bottle. I was just getting familiar and how do you explain this to someone? How do we humans know how to react. Grateful for wise ladies).

Bundle gear from cute room
Quick shower ("I will need this," he says from experience)
Call a taxi quicker
ring a taxi, try to make my situation understood, i look at my shoes

Fast to Chennai

Buy a bag of fruit from roadside, gogo man! eat bananas.

Shaking queasy, drink two coconuts en route

3 anna half hours weaving between cows

Coming the busses directly ahead! Fck Honk!

Roadhouses and truck stops and urine stained curbs and fields

Smoke two beedies each stop

Quick quick!

– dave in taxi

At airport, taxi drivers lounge around their classic sleds – i want to stay and ask them to take me far away. I don’t care to leave *at all*.

not my taxi driver, but other taxi drivers
Continue reading Diary: Leaving India ~ rapidly, in a fog (Nov. 2016)