Tag Archives: fibromyalgia

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: 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 Ramble: 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 Ramble: Pros & cons of living or seeking treatment abroad with a chronic illness

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

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