Tag Archives: fibromyalgia

Phitsanulok Field notes: coffee, noodles, tuk-tuks, kings etc

An omnibus round-up for lousy photos of logistical considerations and personal memories in Phitsanulok, Thailand. Please watch the “Healing Ramble, introduction” video for context on this series.

you knew there would be a post box, yup, Hip Inn had several – my kind of place!

Finding Rest & Calm

On my visits to Phitsanulok (aside from a few transitions and late night arrivals), i stayed at Hip Inn and Coffee because they have typewriters and cappuccinos and all manner of quirky decor (Vespas, VWs)…

clean, quirky, low-key, convenient – love this place (3+ visits so far)

It’s not in the “thick of town”, a little outside but still walkable in a pinch to market and hospital. Nearby was a larger hotel so could get a tuk-tuk or taxi when needed. 

all-time slobber champion

Plus this dog lives at Hip Inn and good for a pet after a tough day.

Here’s my no-longer-secret -but-otherwise-public review of Hip Inn  at: 39/5 Sanambin Rd, Tambon Nai Mueang, Amphoe Mueang Phitsanulok, Chang Wat Phitsanulok 65000, Thailand

Could Live Here for a Month

i know it was my room because there was a typewriter at hand

Continue reading Phitsanulok Field notes: coffee, noodles, tuk-tuks, kings etc

Healing: Story of Kamalasom Massage ~ Phitsanulok, Thailand

on the massage mat, so exhausted and disheartened by life but… doing it

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 Phitsanulok, Thailand over 4 extended visits in 2016-18. It’s now June 2021, i live in Japan, am stable if far from “normal”.  No comments, sympathy requested or accepted. Carry on.

kind ladies at the massage clinic on one of my visits (looking better here)

On my healing journey, i was introduced to Kamalasom Traditional Thai massage ศูนย์ส่งเสริมสุขภาพแผนไทย กมลาศรม (สาธารณสุขจังหวัดพิษณุโลก) clinic in Phitsanulok, Thailand after the magical Mrs. Athaya made arrangements.  Since Oct. 2016, so far i have spent 4 extended treatment sessions at this facility.

always catching a “good bye” photo (including me in my disposable clothes)

This is NOT TO BE confused with ubiquitous “tourist massage” or the abundant s3xy massages, this is traditional “royal court massage and i’ll tell ya, its not gentle, relaxing or delicate – but Oh so great!

I’ll explain how the routine goes: Usually,… first starts with a blood pressure and pulse rate check (keep in mind all this happens in Thai so i just play along with smiles and they are all so nice to me), and brief consult (again, in limited common language).

starts with blood pressure test and whatnot

Then, after changing from street clothes to sorta pyjamas/shorts, i receive 1-1/2 hours of Thai “Royal Court” massage in which all my muscles, joints, ligaments etc are stretched and bent to the very outer limits with elbows, knees, feet as well as hands involved. Continue reading Healing: Story of Kamalasom Massage ~ Phitsanulok, Thailand

Healing: Story of a bath in Chiang Mai, Thailand

a view of bathtub at Rainforest Boutique hotel in Chiang Mai, Thailand – this time phot’d with a slice of papaya

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.

Chiang Mai, Thailand (3 visits various times between 2016-2018)

Along my healing journey, I’ve traveled to various countries seeking treatment and relief. In my condition with fibromyalgia and chronic fatigue syndrome / myalgic encephalomyelitis, my energy is very low and I’m easily overwhelmed by the lights, sounds, commotion… and then i crash and am stuck in bed with pain and delirious exhaustion (which depletes neuro-transmitters leading to mood ummm swings).

me, bathmode

All of these conundrums make travel by conventional means very difficult. As such, I strategically rely on quiet, calm rooms with bathtubs for recovery after long periods of travel. And, importantly, I travel with various items to make my self-care more effective and pleasurable, particularly during these hot, therapeutic baths.

These items often include (as described in caption) :

Continue reading Healing: Story of a bath in Chiang Mai, Thailand

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

“Thunderstorms in the Crash Years” – audio story about #MECFS & #Fibro

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.)
 

Amidst a thunderstorm at 4AM on a balcony in Chiang Mai, Dave discusses – with excessive frankness and emotion – various medical conundrums (Fibromyalgia and CFS-ME) and details the physical feelings of “crash mode” as well as the mental strain in dealing with self de-identification and inter-personal relationships, confusion in seeking help, and various alternative treatments.

audio story about #MECFS & #Fibro, just click play below

Always be kind for: Thunder in the Crash Years – Postcard #75 (75MB, 37:09, mp3, stereo)

No sympathy or advice requested.

(un-licensed but fairish-use) music by:

  • Tegan and Sara “Wake Up Exhausted” (demo)
  • Billy Bragg “Must I Paint you a Picture” (extended)
  • New Pornographers “The Crash Years” and “Adventures in Solitude” (studio)
 

 

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

Tips for airports & traveling chronically ill

Shared 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.

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

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

Tumeric & aspirin and water water water – 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

Not all of these tips are applicable to everyone obviously but for me dealing with ME/Fibro find them to be critically handy

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…

For me this is sensory overload. 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.

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

Thunderstorms in the Crash Years – Postcard #75

 

Amidst a thunderstorm at 4AM on a balcony in Chiang Mai, Dave discusses – with excessive frankness and emotion – various medical conundrums (Fibromyalgia and CFS-ME) and details the physical feelings of “crash mode” as well as the mental strain in dealing with self de-identification and inter-personal relationships, confusion in seeking help, and various alternative treatments.

No sympathy or advice requested.

Always be kind for: Thunder in the Crash Years – Postcard #75 (75MB, 37:09, mp3, stereo)

Continue reading Thunderstorms in the Crash Years – Postcard #75

“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.