Tag Archives: CFS_ME

Healing: Dr. Veena’s Ayurmantra, review

panorama of the neighbourhood from the rooftop of Dr. Veena’s Ayurmantra in Kerala, India

Continuing the story of my stay at Dr. Veena’s Ayurmantra iin Trippunithura, (near Kochi), Kerala, India. Part 1 is a personal diary of my stay seeking treatment for syndromes, there is also a collection of “Kerala Field Notes” with riffs and lousy snaps about a few other activities while there.

For background on the series, check the Healing Ramble introduction video and follow along for Auroville diary, a rapid exit and then onwards to Nepal and possibly Pacifica, maybe Adelaide. Maybe you already saw the dispatches from Phitsanulok, Thailand. 

Unsurprisingly, there are various photo essays (ephemera, Lomo “spy camera” from a cenotaph in b&w or colour for your amusement), a Remembrance Day podcast and video spiel from Gandhi beach.

Next, (for convenience and hopeful promotion of Dr. Veena’s Ayurveda Hospital – Gmap), sharing a publicly-posted review (under no-longer-secret-pseudonym), ergo:

Dr. Veena’s Ayurmantra Review

I recently stayed three weeks in-patient at Dr Veena’s Ayurmantra and found the experience was exceptional due to the kindness and skill of Dr. Veena and Dr. Hamesh. 

After years of shuffling between all manner of specialist doctors with divergent opinions but no solutions besides prescription medications and experiencing little to no improvement, I decided to try a non-traditional approach with Ayurvedic medicine and set out to find a clinic which suited my needs. I wanted a place that was small and attentive and not a “tourist spa”. Further, I sought a place with amenities and cleanliness which would make my stay pleasant.  Continue reading Healing: Dr. Veena’s Ayurmantra, review

Healing: Story of Dr. Veena’s Ayurmantra ~ Thrippunithura, Kerala, India

Me and Mr. Mohammed the Ayurvedic practitioner at Dr. Veena’s Ayurmantra in Kerala, India

What follows comes from my erstwhile “Healing Journal” – written/compiled on a foggy meandering journey to various countries (Pacifica, Phitsanulok, Cochin/Kochi, 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 Thrippunithura (Kochi), Kerala, India (wiki), late 2016 and was written during my stay and in the weeks following – hence possible tense shifting and “note-style”. For the record: it’s nowJune 2021, i live in Japan, am stable if far from “normal”.  No advice or sympathy requested or accepted. Carry on. 

Thrippunithura, Kerala, India , Nov. 2016

Intro: On my healing journey, I had tried most every possible medical modality to find some relief, and was determined to try everything which showed reasonable promise a benefit.

A friend from Dubai recommended Ayurveda as a natural and holistic approach, and in a fog – truly, in a really difficult point in my healing process, I investigated 20+ Ayurvedic clinics in India and Sri Lanka – very rapidly and without knowing what i was doing really…, received all manner of different replies, prices and recommendations.

my first cup of Chai in India! such splendid heaven for a dime

I settled on Dr. Veena’s Ayurmantra the province/state of Kerala, India due her excellent clear communications and no nonsense approach to the clinic (some seemed dodgy, others were “resorts for yuppies” with very high rates, most told me to “call” and i am not a phone calling type). 

Settling-in

I flew from Thailand (after time doing a load of tests at a hospital in Phitsanulok) to Kochi (aka Cochin), spent two nights in an airport hotel recovering in a bath {note: will share travel tips later in the series}, venturing out only to drink coconut (below) and tea (above) and rolled by taxi to the clinic – exhausted, demoralized, confused but open to anything.

stepping out into “all of the India” to drink a coconut 

The clinic was run by a whip smart woman named Dr. Veena who was sometimes assisted by her husband, a jovial tall thin man named Dr. Hemesh who worked at a regional Ayurveda hospital requiring a long bus ride for him every day. Such chemistry between them ;)

I lived in-patient in this facility for three weeks. My room was simple with the bed, wardrobe and desk and a wet bathroom. For much of the time, I was the only patient in their small three-story facility. Other times, there was a couple from Malaysia.

They also had a wonderful 3-year-old daughter who spent the day with relatives and came home welcoming me with a best hug calling me “Uncle”. The staff included a house lady, and a practitioner, a short Muslim man with a moustache – though almost every man the state of Kerala had a moustache. My 3 week, intensive, in-patient program of traditional Ayurvedic treatments was designed to address chronic pain, pain and heaviness in legs, reduced/uneven sleep. The treatments consisted of various massages with medicated oils, plus inhalations, purging, dripping medicated oil/milk on forehead, eyewashes … plus specific food for body’s needs, meditation time, stretching and a variety of herbal medications.

assorted Ayurvedic medications i took “to go” at the end of my treatment cycle along with Dr Veena’s handwritten direction 

Left with 2 month program of medications (capsules, liquids, ghee, powders…) and advice to avoid cold, avoid acidic food and meat, do yoga stretching and breathing exercises. Day-to-Day

Shirodhara vessel for gently pouring liquids over the forehead 

Continue reading Healing: Story of Dr. Veena’s Ayurmantra ~ Thrippunithura, Kerala, India

Healing: a declaration, about going & becoming ~ Phitsanulok, THA

a certain angle required to unlatch the door to everything which exists “out there”

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 technique dealing with #MECFS.

Please watch the “Healing Ramble, introduction” video for context on this series.

This entry from Phitsanulok, Thailand  Oct. 2016 riffs in between 2 extended parts of the trip while flashing back on a few parts which we might get to (chronology be danged).

For reference, its now June 2021, i live in Japan, am stable if far from “normal”.  Carry on.

sure, break the glass but the door is still locked

Phitsanulok, Oct, 2016

I wrote this declaration upon waking up,

“This past summer after literally losing my mind {long story, didn’t end well, not recommended}, I decided to step into the abyss, bravely, intrepidly and without compromise.

While holed up at a mountain cabin while chaos swirled around my life, I’d listen to the messages from records stashed in a basement 25 years before like an unintentional time capsule. I hotboxed my beloved old VW bus, which is now a sauna, where so many memories – happy memories – happened. I reunited with charming characters from my past and even better, met their children who were adults, moreso than me anyway.

Then with a solid head of mushrooms and MDMA (therapeutically), a plan came to me. So on this psychedelic carpet, i clicked enough buttons on the internet to purchase an abstract variety of plane and train tickets to send me around like a manic board game in such of a new flavour of truth and reality >> Salt Lake City to Las Vegas to Pacifica to Chaing Mai and now to this rather-anonymous-work-a-day city Phitsanulok 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 (for me) un-charted territory beyond what science and reason says it’s capable of this haggard body, but I refuse to accept anything but finding some sense of joy.

I can live with pain, i accept this (i suppose, begrudgingly but practically), but i cannot accept living without my brain and without my heart and soul. I am born to give, i exist to share and i am empty without these.

Without a safety net, without an emergency escape route, without language skills, without the strength to punch my way out of a wet paper bag, i built a tiny universe and painted the walls just the colour i chose.

So, who will return to the West Coast on December 6th? Will i return? 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, stride by stumble, i will gently apply the mortar to rebuild, to renew, to replenish and regenerate from the very mitochondrial cells outward.

Whatever the results, it will be me.”

all the colours are possible, sometimes, i suppose, beyond the black… “let’s imagine” i suggest

See also: Thunderstorm in the Crash Years & Story of a bath and more to come… next stop: India, come along

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

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.

I am still,…

I am still, and here.

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

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.

i’m super wanna be over…

i’m super wanna be over with this disability in general, but especially done with the fucking paperwork that endlessly comes along.

##

PS I really hate it when I say anything about this publicly because I hate being a downer but, it’s truthfully not just the paperwork (of course) that’s just one other thing that piled on top of all the insomnia and muscle spasms and pain and confusion and brain fog.

Now that I’ve been prescription med free for over a year, I have more brain, but also more pain.

And in my somewhat bullshit “journey towards acceptance”, I’m trying not to be so coy and vague and take all this on myself. Truthfully it’s more than I can handle.

Just thanks to you each for listening and still caring about this broke down old dude.

I had a few super great days, the best I’ve had in sometime but then the inevitable crash happens and payback is a fucking bitch.

#Spoonies

Open all the doors (and see reflections)

The Santeria god/ess of doors, windows, pathways & corridors opens destinations & closes pitfalls as needed

Badge Unlocked!

Badge Unlocked!

… And with that flu shot, I’ve gone over 10,000 needle pokes in one year.

#tougherthanyou