Tag Archives: mecfs

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: 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: 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

Community & Correspondence ~ Beat Sushi for Dan in Mass & Jack Kerouac 100

Thanks to Dan for the package of friendship, ephemera, artifacts and goodness

Taking a break from chainsaw noise cutting down bamboo, DaveO rambles on about the importance of community and correspondence (yes spelled incorrectly) – especially while in a rough patch with a chronic and complex illness #MECFS – and shares a remarkable package sent by Kerouac enthusiast Dan Bacon in Massachusetts including: scrapboook, artifacts, ephemera and memorabilia from Lowell, Jack Kerouac’s 100th birthday, and other events including the impending Town and the City music festival which inspires playing of lovely blue Tanya Donelly and Parkington Sisters vinyl record. 

Also shows new-ish Cascadia passport and meanders about Gary Snyder in Japan years ago and his recent convos with poet Wang Pang ++ love of maps, letters, stories, and how we’re all part of the erstwhile Beat tradition if we are living intentionally, respecting others’ voices and creating goodness. 

Happy to be your fan, fondly etc. from Giggling Piglet Studio in a historic Kura storehouse in Tsuchida, Okayama, Japan.

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

Healing: Attempting amusement at the hospital

Attempted amusement while killing time at (yet another) hospital visit.

Nothing to see except for van Gogh tie – which matches wife’s outfit (and the usual #Fluevogs for a little bit more swagger while dealing with all of this) #mecfs #pwme / Rough patch but alive (& loved).

Back home in bed in cool dark room, medicating, meditating & trying not to spiral.

Hard cause so much life out there + so many things want to do but remind myself “patience and time are my allies” (also audiobooks, podcasts & lavender eyemasks) / Should be easier but…

Anyway, just keeping track of all this so when I’m older and wiser and healthier I can remember the steps along the journey. Carry-on.

Healing: On the bus towards treatment

So tired, all the time + cant sleep

Waiting for a bus, bound for seitai treatment (now with sunny day scarf & a Mavili cap) / tough MECFS stretch of late, trying to shake it loose.

The seitai treatment is a really good reset for me – but it does sometimes shake loose some long lingering conundrums.

I mean yeah, I’m in a rough patch but I’m doing “things “*every day* where previously I would be in bed for weeks at a time. Anyhow, the doctor is a great dude, has the best record player I’ve ever seen and a massive collection of classical music. That said, times like this I really miss a 90 minute Bali spa massage.

Also thinking about Ayurveda in Nepal, the wonder of helping others, & Cmdr in Diego Garcia. We talked recently about checking in for a three week Panchakarma session in Pokhara and then heading back to Ghandruk, Annapurna District.

My favorite close-by restaurant to the clinic (Grilmori) has moved (or something) and i ended up at a rather unsatisfying hectic lunch experience at a coffee shop – did not document.

But I do have a photo of a sandwich at the hospital that should go on another post but well, it’s not like this is “Important” or anything. It’s a picture of a sandwich and a coffee

So… Back on bus, on way home #wipedout (saw a dead bird on a newspaper)

As usual, just annotating for future reference. Move along or sit down.

Healing: Laundry & Unrest

Lots of action and activities and errands last Monday, makes the heart and head happy but the body can’t quite stay/catch up so went into #mecfs “crash mode” on tuesday – though I’ve stumbled through this for so many years now, it never gets easier / such pain and unrest and confusion – kinda like epic jet lag plus hangover plus flu and a kick in the head/gut/kneecap all at the same time #NonScientificAnalysis

Blanket note: Master Artist Bill Reid design / collab with canadian national history museum / wedding gift from pal Kemp Edmonds.

Slowly coming back to life on Wednesday – enough to wash the dishes and fold the laundry. I really enjoy folding laundry except for fitted sheets. I would investigate the proper technique but I really don’t need another obsession 🙂

Noting I am writing this annotation on Canada’s first national Day of truth and reconciliation (on which I made appropriate donations to express my solidarity in a practical manner as well as lighting incense or metaphysical support)

Tomorrow is usual check-in with the neurologist at the city hospital.

Memo: With my weird illness (though hardly *uncommon*) there’s no usual treatment path but the check-ins keeps me in the system as well as acquiring minor medication to help smooth out the edges (ditched all the heavy duty medication some years ago – more pain but more brain).

PS with the onset of “long-haul C 19” illness it’s suddenly given a lot more awareness, research, science towards my nuanced chronic viral infection which presents some of the similar symptoms

Anyhow, just wanted to share the simple pleasure of folded laundry. No big deal, I roll-on, just floating it out there in solidarity with other folks who are primarily homebodies due to physical constraints which can feel a little challenging as people are getting out and about a bit more

Trying / note to self (so far, so fast)

Trying (en route to maintenance)

I hafta remember {times like this} ive come so far, rather fast – so far, so fast! >> after falling down down down so so deep.

5.2013 til now = 3 life epochs (or more).

Recap: alive, creative, loved, tired {+ sometimes the syndrome is so fcking tough}

Grateful to pals for sparking me up with kind words across time zones when i could barely put on trousers and get out the door with wallet, keys & bus card for a wee bit of medical maintenance.