Category Archives: Healing Ramble

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 Ramble: Peacock Ayurveda Garden ~ Dikwella, Sri Lanka, 2018

welcome to Peacock Ayurveda Garden

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.

With respect and understanding that not everyone can do *this* – i have another riff about “why” to seek medical care or healing treatment elsewhere (not in US/Canada in this case). For now, use it if you need it, if not just pass along.

Gist: Along my healing journey, I sought treatment at Peacock Ayurveda Clinic in Dikwella (map to Peacock), close to noteworthy Galle, in southern Sri Lanka. I stayed in-patient for three weeks for a complete “panchakarma“ program.

Background: Certainly, Ayurveda has a number of different flavours in terms of quality and type of the facilities… Ranging from “spa-like“ facilities catering primarily to relatively wealthy or western clientele, to very spartan and rustic, often government-run, facilities treating local people (see Dissanayake diary).

Can be difficult to find the exact right fit mixing with medical needs but with comfort and safety enough to have a relatively enjoyable and stress-free period of time.

This is especially important because doing an extended panchakarma (five medicines) program as it can be rather intense. You are quite literally cleaned out inside and out, and your days are quite packed from early morning onwards with yoga, meditation, meals, doctor consultations, various massages, eye, ears, and nose cleaning, and some of the treatments, let’s just say can be rather “delicate“ or even rather embarrassing. Further, the effects of the treatment can be very intense and lay one out for a couple of days.

I researched a lot of different facilities around Sri Lanka and ended up on this one which seemed, from the outside, to be a good fit for me. While overall it was not near as fulfilling of an experience at my time in Ayurveda Health Home in Nepal or Dr Veena’s Ayurmantra in India, it was a learning experience.

“darling, i’am off to a rejuvenating Pachakarma treatment, see you in a two weeks”

Grounds / Facilities: Of the four different (at the time) Ayurveda facilities at which I received treatment, this one was definitely the most fancy and spa-like.

oh hi buddha

There was a pool (which frankly I was really never able to use but that’s cool), lounge chairs, beautifully manicured gardens with flowers in abundance, and overall the facility was very splendid, filled with interesting antiques, and the patient rooms were like a very nice hotel rooms, even with a private patio area for sitting and resting.

the grounds were immaculate and yes sometimes peacocks

Treatments / Schedule: The treatments were performed in a variety of traditional style huts, which were quite functional as well as charming. Each day, I was issued a fresh sarong and shirt and hat as the treatments are very oily. Additionally, I was given a basket of tiny disposable underwear to wear during the treatments.

Most days, I would have a short consultation with either the senior doctor (a gentleman who was very busy and often/mostly offsite) or a junior doctor (a young lady who was clearly still learning and mostly observing but very kindly).

Dave working on healing at Peacock Ayurveda near Galle, Sri Lanka (with Dr.)
Dave working on healing at Peacock Ayurveda near Galle, Sri Lanka (with Dr.)
Continue reading Healing Ramble: Peacock Ayurveda Garden ~ Dikwella, Sri Lanka, 2018

Healing Ramble: Brief notes from Okayama Uni. Research Hospital #MECFS clinic

Brief notes from #MECFS specialty clinic at Okayama University Hospital Sept. 2, 2022. (Originally published via @uncleweed Twitter) – intro in this video mostly about poetry in slender books and this preview “Healing note: new MECFS Clinic at Okayama University Hospital“. PS Referral took about 7 to 10 days (much less than the 18 month long wait times I was dealing with in BC)

Very brief version: long day, spun me out but “felt heard” & respected and have some new approaches.

More notes:

Was at hospital from 9 AM till 3:30 PM… Completely wiped out but felt heard and seen.

It’s a teaching hospital so a couple of young keeners were in on the fun and I asked them questions like they were my interns “back in the day” :)

Primary doctor asked a lot of really good questions ++ she dug into my history with a car accident in 1987 (plus various fainting/concussions) and impact on my spine to investigate whether I am a “spinal leaker”

My bilingual medical summary prepared in advance was a stroke of momentary genius. very helpful as showed I have tried many modalities (done the work), made sure I didn’t forget anything, and showed respect for their time {35 pages condensed to 3 in 2 languages}

We also discussed the mental health side of this whole “living with a chronic complex disease and being disrespected by the medical field” and the work I’ve done with counselling, CBT and the experiences with various psychiatric assessments & importantly, where I’m at now

Did a laundry list of blood test (importantly in my case, thyroid and cortisol) as well as an IV with some new medication (better impact than orally)

Have two new vitamins, plus one traditional Chinese medicine compound, and one sorta experimental (off label) medication to add to routine

[Update} this is Traditional Chinese Medicine to my #MECFS routine.
补中益气汤 Bu Zhong Yi Qi (BZYQ) decoction is a classic prescription in Chinese history that has an obvious effect on improving fatigue symptoms.” {Thanks Dr Erikson for link}

I was wheeled around everywhere and it was a hectic busy bright environment but I was also smart enough to bring my eye mask, earplugs and book

As this was the first time at this special (referral only) hospital, had to get a special card, download a special app, fill out specific forms

I go back in three weeks to review progress with kindly Dr (did i mention she was rather comfortable in English so we code-switched a lot?) and have consult with traditional Chinese medicine specialist + discuss referral to specialist in Hiroshima about the aforementioned spinal leakage

Continue reading Healing Ramble: Brief notes from Okayama Uni. Research Hospital #MECFS clinic

Diary: ME to Consulate / much officialness + sleeping masks & fades

Yesterday’s #MECFS medical intake checked off the list (more to say, of course, I have more to say… there are notes).

All packed up

(Very brief version: long day, spun me out but “felt heard” & respected and have some new approaches)

So today was resting in a cool dark room for Thursday is business of an official kind in Osaka for the US consulate but just gonna do it as an “sniper mission” with no additional stops.

Rules: Items are forbidden beyond scant essentials. Various documents and methods of large payment. Oaths will occur.

As such, I’m looking official, right? #WorldsWorstSecretAgent

No spectacles or smiles allowed, also must fit all hair inside the photo, really.

Yes, I am leaving the prefecture. We will travel by private vehicle rather than train for precautionary purposes.

Then next week starts in projects for Canadian and Japan passports for Ichiro, (and renewing Canadian passport and Japanese resident card for me) but that’s next week(ish)…

Tip regarding passports in general: keep dozens on hand for various purposes, mix and match, trade with your friends! Remember, everything is a forgery. Invent your own country.

All right, 4:38 PM, got to get out of bed and wash some dishes… Get ready for my darlings coming home. Think we’ll have kabocha croquettes

PS re: sleeping masks

I have about 17 sleeping masks, 4 or 5 in regular rotation but am (obv) still seeking *the perfect 1”.

AudreyHepburn’s much sought after blue satin sleep mask makes £6,250, over x 4 the high estimate #AudreyAtChristies #AuctionUpdate

Above is Audrey Hepburn’s actual sleeping mask, not the one used in-character in “Breakfast at Tiffany’s” which is endlessly reproduced and sold through all your usual Internet outlets… This one went at auction for £6000

Want:

  • soft to touch/silky material
  • big enough to really cover beardo face comfy w/o squeeze
  • wide backstrap w/ covered elastic
  • and dammit, want it cute!

I keep buying them and what should be a very simple solution is always either under built (skinny shtty elastic are the worst), poor materials, or too much “technical” cloth that doesn’t feel nice aside from an emergency use, or so massive that they wrap your head in some kind of overheated cocoon.

With my illness, I wear these like a super lot. I would make my own but I’ve got a few projects on the list before that and figure someone’s got this figured out.

Advice?

PS A few more notes and examples commingled with notes about Ramen and I don’t know, probably pickles

Not for passport use that surfaced from 2014, fresh from Junior’s Barber shop… Just thinking I might get to go back there one of these months 
* Public Service Announcement *

Note: Junior's BarberShop does the snippy snip in chill style.

Ya be a fool to go nowhere else for fades, razor cuts. & all that...

Down Davie st near Burrard & Hornby - find it, worth it.

Peace in every street.

Healing Ramble: Chronic Dude, logistical notes about “how to deal with traveling”

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…)

Notes & Travel Tactics / summary

  • Comfort Kit and crash kit
  • Flight time: afternoon or energy time (no early or late night)
  • Airport hotels with bathtub for pre and post flight … wheel right to checkin
  • One place and be part of community 
  • Postcard and scrapbooks along the way … send home by Post offices
  • Playlists
  • Stretches – aisle seat
  • Massage
  • Coconut water/hydration
  • Wheelchair service
  • Block out airport stimulation (blue specs, ear plugs… )
  • Break it up / short hops, stay over
  • Medication CBD/RSO (but don’t take it with you!)
  • First on, Last off
  • Pack extra light, easy schlepp, buy stuff if needed and ditch it)
  • Travel uniform (slippers, compression socks, track suit, slip on shoes
  • Pick the right place
  • Places to get medical help: Thai, India, seems weird but… 
  • Confidence
  • Better than home w/ reruns
  • What are yours? 

Tips and Topics:

  • Crash Mode
  • Triggers (list, notice)
  • Warning signs eyes extremities, foggy, stutter
  • Get to safe place to regroup 
  • Quiet
  • Lights unscrew
  • Sound & batteries
  • Kids
  • Warm and fresh air
  • Electric /weighted blankets
  • Hydration coconut water
  • Magnesium etc. 
  • Soup
  • eyes/ears
  • Bath 
  • Candles
  • Epson/Magnesium/THC Salt
  • No interruption
  • Music/med
  • Reduce ? and sadness? 
  • Slow Docu films
  • Art Postcard therapy
  • Recover – ravenous … no junk!
  • Magnesium is handy
  • Cold bandanas around neck and/or temple
  • Moulded ear plugs
  • Comfy eye mask
  • Perfect pyjamas
Continue reading Healing Ramble: Chronic Dude, logistical notes about “how to deal with traveling”

Healing note: new MECFS Clinic at Okayama University Hospital

Note: tomorrow is check-in at *big city hospital* with neurologist at which point I’m going to talk about transferring my records/file to #Okayama University Hospital where there is a program for “long c19” & #Mecfs / I have 9 years of tests, treatment notes and modalities to contribute.

Look, it’s a real brochure about MECFS, in Japanese from the local university research Hospital, just opened last year after their “Long C19” program

(Of course) at this point,I’m not expecting anything “new or miraculous” but desperately need to take at least a half a step forward as this last few months/days, actually this year, has been really hard getting above baseline #mecfs (I bounce between levels 6,7,8 if you’re curious).

PS here’s someone’s (not mine) nice blog post about “10 things I wish people knew about MECFS

[update] The big hospital was efficient, tidy and quite vast with that sort of HVAC hum and fluorescent lights and echoey hallways that are a bit tough for me but usually a hallmark of modernity. Anyway, got the referral letter, hooray! + Dr is going to call the other doctor and there will be a fax involved somehow.

I also got some other new medication for pain/sleep and so far it’s been quite pleasant (keep in mind, I am very judicious about avoiding heavy duty meds as I’ve gone down that route before and I prefer to keep my brain even if there’s an element of pain).

Oh and got one of the egg salad sandwiches with the crust cut off! Such a luxury. Thanks of course to my darling for doing all the driving / stickhandling.

PS I found my brown leather shoes which I wore but did not take a photo so you’re gonna have to believe me.

Healing: (un-detailed) back to doc (& next steps)

Thanks to each of you again for your kind words and thoughts and thinking about me re: #daveo52 / 8-16

But, ummm, ugh.. it’s the same thing every year, I do a little bit too much on my special happenings (i guess #shrug even tho kept it super mellow) and then go into bad #MECFS “crash mode” (i guess?) which landed me in the hospital in great pain (and i’ll spare ya gory details) with sweet slow IV, plus blood test, stethoscopes inspections, touchy pokey pokey, blood draws, and a bonus C 19 test out the door with the medicine) – The beds are not comfortable (but I was smart enough to bring my own eye mask) regardless, the doctors and nurses are very sweet and thorough.

good thing is, it’s like a small clinic but it has x-ray, ultrasound, small lab, small pharmacy so I can do everything in one place… Even got another C 19 test

so slowly putting it back together, I’m not good at this chronic complex illness yet it’s only been nine fcking years #sheesh admittedly disheartened, tough summer.

Anyhow this is my periodic reminder that while I see all of the request for various little tasks coming in, I will get to each eventually but just nothing in the next few days.

Fondly as usual, dvo at Tsuchida cottage

Next day: Back to doc today / stabilizing but completely wiped out & drained from dehydration and related GI stress & spasms / New sheet of test results (for a translation project). Trying to keep spirits up but *so sick of it all*.

Extended note: visited Dr, got some new blood test results which will be a fun translation project, asked him about causes; *not viral so… allergies? and histamine? thyroid? GI? and if he’s got any ideas about why the fck this happens to me repeatedly even though I’m *totally keeping my pace is slow and gentle, eating good foods*… So much throughout my life, I’ve had conundrums related to G.I. system in general from hernias to aggravated bowel to giardia to worms and even esophagus issues and so I guess when I’m weak, this is where the problems manifest and my goodness, I was rewriting my will while twisting and riding on the stern style Japanese bed with the IV gracefully placed in by a woman who would be retired in any other country. Ice parks please (and add some morphine to the drip :())

No real thoughts or answers but at least he was nice and he actually you know, inspects my body with hands and stethoscope and old-school blood pressure cuff.

More: On the 25th, we go to the big city hospital for the neurologist at which point I’m going to attempt to get my records transferred to the university research hospital plus, and (just for my CPO-D pension peace of mind), get a record of all my visits and get some paperwork for my “semi official disability status”.

Didnt have wookies in mind when they designed the slippers

Thanks for the kind words, just showing how good the tiny green slippers and the pink couch go together.

Now: Back in a cool dark room, feeling a little bit discouraged and wiped out but whatever, it’s the routine right?

Diary: May 5月, Beguiled (& rather) Bewildered

Oh bye May

Spinning past another month, we’re at the 31st and I’m waiting to try out a new Ayurveda clinic here in dear Okayama. So a few annotations:

Guess it ain’t no secret that I’ve had a hard time bouncing up this month/year, however in the midst of it all I’m out of bed *almost* every day and doing a few things around the house even if it’s just dishes, laundry, compost, making tea and rice. Some days I do a few more things, for example:

This month we had a surprise overseas visitor and we went together to one of the inland sea islands as well as enjoying food & items together – and it was a joy to share my “new life” with a friend from my before times.

I’ve done a few sessions of sorting around in the kura barn and, going through bins of artifacts and taking from “stuff in a bin” to curated collections in binders with labels and themes. It’s a task requiring equal parts organizational theory, temporary nostalgia, celebrating past and imagining futures, specifically “what can I make with all these things to amplify what it means?” None of the items are by themselves significant for the collection of them all creates a tapestry of life. That sounds rather “grand” but in my mind, it’s the usual days in regular life that make life remarkable.

Coming on Two & looking like a young man already

Wonderful child Ichiro has battled through a couple of snotty noses, colds and fevers which sometimes pull him out of school due to “protocols“ but my goodness, the words are tumbling out of his mouth now, the balance is increasing, his awareness of where things go and how to do things is increasing on the regular and I am absolutely proud. I am trying to add to my skill set of how to “tug the reins“ a little bit without being a grumpy Papa and not buying into the fallacy of punishment, which perpetuates and hides problems and always requires escalation and this is proven – throughout forever – to be generally ineffective & mostly unwise.

My treasures and the penguins on a recent trip to Antarctica via Shimane

Darling wife Ryoko is studying for her “tree doctor” level up exam coming up later this year and has also continued work on her charcoal kilns and tidying up her tool shed a little bit for maximum organization efficiency. She’s also been doing some secret live streams while kiddo and I are in the bath and usually get sa couple piano songs out before Ichiro yelled out “bing bong Mama!” and we do our “Captain Ichiro, are you ready?” countdown to exit bath, dry up, lotion and pajamas, stories, cuddles and sleep.

For me, sleep is a struggle – i sleep long but shallow & unrefeshing/replenishing plus make up in fits and starts + dealing with a lot of neurological pain still along with the brain fog, confusion and general crippling fatigue. So, new plan is to change my periodic check ins/administrative visits from the “big city general” hospital to the University Hospital where they have specific departments investigating long-term chronic post-viral inflammation/immune system diseases relating to the current cee-one-nine virus which kinda dovetails into my situation with #MECFS. There is also a traditional Chinese medicine clinic on site i’ll endeavour to try in my quest for new approached for increasing my baseline.

Always have at least a dozen sleeping masks on hand… i mean on face

As I mentioned in a video (I should know that I’ve done a couple more dispatches in my “healing ramble” series if curious) this month was the awareness campaign month for my illness, as well as awareness month for mental health, Asia Pacific islanders, IBS/Crohn’s and other things (Cascadia Day!) which have impacted my life. These notable days – coupled with a few significant anniversaries: me becoming ill and memorial service / for my Mom & Creepers & Chums party; I guess added onto the emotional exhaustion of just being constantly zonked.

Celebrating Cascadia several years back and Evelyn Street, Lynn Valley, North Vancouver, unceded Cascadia bioregion

But hey, here I am talking about it!The important thing is, I have a wonderful family here and great friends around the world, food is delivered weekly, we plant seeds in the garden, postcards and packages come from time to time, I have enough books and records to keep me constantly amused and I’ve even done a bit of scrapbooking about our trip a couple months ago to Shimane.

Tip: send postcards to yourself

Yes, mentally I always feel like “I should be doing more” and I guess felt since was a little kid reading Tintin books that I was meant to be “out there in the world sparking revolutions” – so I remember to pause and think of all the things “accomplished” in the last three years since I came to Japan and all the things in my almost 52 years… So many countries, conversations, projects and so much more to come.

Adventures ahead, adventures behind, same same different different

I also continue to fiddle away at this “creative life archive” / when I run down and stuck in bed, I listen to audiobooks and longform podcast and sometimes tappity tappity on the pocket robot to assemble posts with pictures, musings, memories and what not. I love the feeling of hitting publish and thinking that someone might find a bit of inspiration or amusement.

Getting hot and humid so hoping in June we might have some beach days and also set up the yard for more playtime right here. Ichiro hits two on the 23rd so have an eye on a balance bike and maybe a visit to a zoo.

Always more, we’ve got all the time in the world.

A wonderful painting I came across: Martina Heiduczek
“Coffee and Friendship” / two of my favorite things :)

Healing Ramble: Tips for airports & traveling whilst chronically ill

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.

With respect and understanding that not everyone can do *this* – i have another riff about “why” to seek medical care or healing treatment elsewhere (not in US/Canada in this case). For now, use it if you need it, if not just pass along.

Tactics:

* Request wheelchair service well in advance and use it proudly – Besides getting you around the airport, you fast track through security and immigration lines / You are usually be first on and last off the plane, be patient

* Fly Tuesdays and Wednesdays mid-day, the airports are most mellow at this time (also tickets usually cheapest)

* Dark glasses and earplugs/noise canceling headphones for when you’re in the airport

* I use an aisle seat so easier to go to the back galley area and stretch if needed + restroom breaks without hassle when a sleeping passenger next to you

* Lavender oil, compression socks, eye mask and your most comfortable sweater for the flight, dress respectable to increase chance of upgrades (and because you are sharp like that)

* When flying far – for me anything longer than three or four hours – book a hotel in (or close by) the airport at the other end, in some cases you can get wheelchair ride to the hotel to crash out and recover. Bonus points to get one with a bathtub

* Check your bag, only take a small carry-on with comfort items, don’t try to be that “efficient business traveler” and / or save money with just a carry-on

* Turmeric tea/tincture & aspirin and water water water & coconut water & NO booze – Did I mention noise canceling headphones?

* Put on an audiobook or chill music… Keep the sensory stimulation low by not watching movies especially on the crappy seat back for the videos. For me, the fuzzy screens spin me out plus you see all the other anxiousness and activity going on

* Get a credit card which gives you access to airport lounges… go to the airport early, find a quiet corner and hydrate and snack with protein rich foods so when you’re on the plane, you’re not eating the crap or being interrupted… Plus when using wheelchair service, best to go well in advance as some airports have a limited staff performing this service

* When you board (using wheelchair you’ll probably be first on) introduce yourself to the flight attendants and mentioned that you may need extra water and make sure you are close to bathroom if you need a little sensory de-stimulation

Tip: Oh one more thing, seriously don’t try to do a lot of stuff when you travel, for me I go places to find bookstores and quiet coffee shops and simply be somewhere else.  Just because you are a “somewhere else” doesn’t mean you suddenly have a bunch of energy to go out and about and meet lots of people. Avoid restaurants at busy times as well (i.e. hit lunch after 1:30 get a table in a quiet corner) … for me this reduces sensory overload.

Note: Not all of these tips are applicable to everyone obviously but for me dealing with ME/Fibro find them to be critically handy. All for now, curious to hear your tips or any thoughts about the above.

Also this archive is laden with other riffs about healing elsewhere and taking baths in the Healing Ramble series.

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: nine years w/ #me

Nine years doesn’t sound like a long time, but wow, nine years is a really long time. Enough for everything to break and everything to change and everything to rebuild and everything everything

The days stack up in patterns, about the recursive cycles, remind the children, it’s all about the cycles.