Tag Archives: spoonies

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

Mementos: Pedicures, various

These days – what with the M.E.(cfs) and Fibro etc. – slowing me down, I find activities to get me out of the house which requires doing not much but sitting.

While pedicures may not seem like a medical therapy, and they’re certainly not, self-care is important part of my healing journey. Indeed, when feeling frustrated and early days of the illness, I made a list of things I can do which involves sitting down, but get me out of the house, and leave me with a feeling of satisfaction. These ideas include: making scrapbooks, watching matinée movies, sitting in parks under a tree, getting my beard professionally trimmed (rather than chopping at it myself), as well as enjoying pedicures.

As such, on all my healing journeys, I find pedicure places to massage and soothe my feet, trim up my nails, and leave with some colour to decorate. (Noting this predilection often elicits a strange response from the practitioners as painted toes aren’t as common for men as they are for women certainly, but I find this practice quite enjoyable nonetheless.)

In some cases, I paint my toes the colour of a local flag or other traditional local schemes (coconut trees, bamboo, waves…), otherwise I generally stick to shades of blue and green. For the record: Indonesia and Thailand definitely have the best pedicure practitioners (is that the proper term?), but I’m also eager to try pedicures in Vietnam as many manicurists in the USA, come from Vietnam.

In India especially, they thought my practice of painting toes was very strange, as such, i did myself (very poorly yet joyfully nonetheless). In Nepal, they were low on supplies but made do with some rugged polish which was moreorless impervious to removal. Once or twice, i enjoyed a pedicure whilst at sea.

I first started this practice at the advice of a remarkable lady who took me for a pedicure in Vancouver before going to Jamaica the first time at that time, I had Jamaican flags painted on my big toes (not sure i have a photo…). Sometimes i take photos of my toes, not all the time, here are some of mah big ole ugly feets. Sometimes i forget and just take snap of the old colour before replacing. No annotations since i don’t expect anyone will look or care, i mean really, its just photos of my feet – ewwww. Continue reading Mementos: Pedicures, various

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.

Dog days of healing…

Sure don’t enjoy talking about, or even acknowledging cause feels like i’m conceding power & spreading sadness, but… fck me, the fibro + me/cfs etc really got me achey bleary today. I’ll be alright, just saying here rather than hollering out-loud and weirding folks out. #puppy #sadeyes #cuddles

Special affection for these diligent healers

Career opportunities: professional hugger and/or notary public. Special affection for these diligent healers who kindly welcomed and looked after a beat-down aging lad in a far-flung foreign land.
 

I am still,…

I am still, and here.

#wonder #grateful #healing #reinvention #quietish #freehugs

Solidarity, pin (circa 1980s) for solidarity

More to say about the meaning behind this pin acquired when i was learning about what mean to be aware of international affairs and digging below superficial news bulletins concerning the issues in far-away lands – in this case disputes in Poland in the surprisingly heady days of 1980s… but in the meantime…

PS exclaiming in a whisper my solidarity with shut-ins, spoonies, fibroids, cfsme kids, intrepid, travelers, seekers, healers, grinders, pals, forgotten, strugglers, stragglers, smugglers.

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.

Anything I can do to make your life better?

So how are you doing? Anything I can do to make your life better?

#

Grateful, the world to see… #thanksgiving

May I continue? By the way, I don’t do the feasting part of Thanksgiving these days but I like being thankful for stuff.

I am thankful for art and the artists who create and inspire me and others by dedicating themselves honestly to elevating above craft into making things for the future

I’m grateful for music, especially played by diligent up-and-coming bands who often become friends (I love being your fan), especially all the people over the years who said “dude you got to have my cassette and/or CD) I’ve captured and collected your efforts in a shoebox.

I’m grateful for the trains that still exist in the World to slowly rolled me to elsewhere and that the idea of travelling open oceans is in a state room in a freighter still exists.

I’m thankful for the 100 or so practicum students from all over the world I had the privilege of mentoring through many jobs, to help launch their dreams, careers, travelling, creation etc.– you “young folk” </ Old man voice> catch too much crap from crusty old bastards but I am 100% in belief that you will change the world for the better.

I am thankful for the few other people in the world who still send postal mail with thank you letters with interesting and heartfelt stories.

I am thankful I wasn’t too much of a jerk throughout my life or this healing journey would be super lonely. Along with this, I’m thankful I did all of those talks (mostly for free) to all sorts of groups (not just bigshot gigs) as I met so many lovely people who still send me messages despite perhaps barely meeting me in real life.

I’m grateful and thankful I visited my beloved old Volkswagen bus (hot boxed of course… It’s a sauna) and thankful that I documented and organized and stored so many artefacts from my previous life as they colour who I am today. Noteworthy especially is that killer stash of records unearth of late. Also, I have every letter any of you ever wrote to me, organized, sorted and stored.

I’m thankful for having folks and friends scattered all over the world who make my life more diverse, colourful and interesting — you give me sparks and dreams of adventures — virtual and/or meat space.