Tag Archives: fibromyalgia

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.

Healing: Story of Kamalasom Massage, Phitsanulok (Thailand)

On my healing journey, i was introduced to Kamalasom Traditional Thai massage (and other therapies) clinic in Phitsanulok, Thailand after the magical Athaya made arrangements.  

Since Oct. 2016, so far i have spend 4 extended treatment sessions at this facility.

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).

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)

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

Pod cover - postcards from gravelly beach - thunderstorms in crash years

Amidst a thunderstorm at 4AM 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.

Beige unrelenting present…

 

Every day brings
An anniversary of something grand
So much promise and vigor
Graceful ambition, earnest yearning
“Don’t let the past affect the future”
Sound so easy
Until the beige unrelenting present
Brings another morning of pain

So many years now
Trying, climbing, sliding
Up the slides of a slippery well
Fighting, accepting, relenting
Leaves with only
Exhaustion from the inevitable slide

The shaggy dog comes to rest beside
Oddly purring softly, sedately
Sharpening his claws
Glancing up at me
Noted
I am left alone

I am left alone

Healing Story: Dissanayake Ayurvedic Hospital, Galle (Sri Lanka)

Background: Along my healing journey, I received treatment at Dissanayake Ayurvedic Hospital in Galle, Sri Lanka, a government-run, pay-what-you-can facility.

Dissanayake Ayurvedic Hospital
Dissanayake Ayurvedic Hospital: Sign

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. Continue reading Healing Story: Dissanayake Ayurvedic Hospital, Galle (Sri Lanka)

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.