Tag Archives: CFS_ME

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

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

Along my healing journey, I’ve traveled to many 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. I travel with various items to make myself care more affective and pleasurable, particularly during these hot, therapeutic baths.

These items (can/often) include:

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

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

There’s no doubt…

There’s no doubt I’m sick of being sick & desperately want my life, my brain, my memory, and mojo back + ability to see shows w/ some beers

Sleep is most critical tool for healing…

Hey, that’s 2 good nights of sleep in a row! Sleep is most critical tool for healing but remains elusive without chemicals and inebriation.