Tag Archives: CFS_ME

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?

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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.

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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.

80+ yr old person walking thru my hood, sucking down a cig…

Whenever i see 80+ yr old person walking thru my hood, sucking down a cig, i think “hell yeah, anything is possible, we can be invincible!”