Tag Archives: chronic

Healing Journey: Update, Summer 2018

“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.

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

Facing Chronic

The thirteenth Doctor concurred with nine of the others… “Get your affairs in order, apply for disability, consider getting a cat.” After which she noted, as most of them do, “You know this syndrome usually affects women, in fact 90% of the time” – my eyes roll inadvertently, i don’t care if she notices. She sends me along with assurances that the extensively-noted side “benefits” of the basket of prescriptions “don’t happen to everyone after all.” Ugh. I am toxic and confused.

Walking to a borrowed home, I rest on every bench, imagining my one-life revolving around reruns of M*A*S*H at 6 and 6:30, Hogan’s Heroes at 8PM. Maybe I’ll start watching that show called Seinfeld I missed in the 90s. Was that the 90s? I count years backwards to figure: there was the Japanese sojourn, the time in Micronesia, grape picking in Germany, hitchhiking Australia…”

I see myself all in reflections: I stoop, I am slow, I resist definition but must acknowledge a choice… I can “sit still” or I can “run away”. Ergo: burn out or fade away. So, I write a will (for the first time) and buy a one-way ticket to a distant city I’ve know nothing about.

Declaration: upon waking up

I wrote this declaration upon waking up…

This past summer, after literally losing my mind, I decided to step into the abyss… Bravely, intrepidly and without compromise.

Holed up at a mountain cabin while chaos swirled around my lives, I listened to the message from records from decades ago, I hot boxed my beloved bus were so many happy memories happened, I reunited with charming characters from my past and even better, met their children who are adults (moreso than me anyway), then with a solid head of mushrooms and MDMA, this plan came to me.

On a psychedelic carpet, i clicked enough buttons on the Internet, to purchase an abstract variety of plane tickets to send me a round like a manic boardgame in search of a new flavour of truth and reality.

Salt Lake to Las Vegas to Pacifica to Chaing Mai and now to this anonymous city 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 uncharted territory, beyond what science and reason says is capable of this haggard body but I refuse to except anything but finding some sense of joy.

I can live with pain I accept, but I cannot accept living without my brain and without my heart and soul. I am born to give, exist to share, and I am empty without those.

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

Who will return to the West Coast on December 6? 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, I will gently apply the mortar to rebuild, to renew, to replenish and regenerate from the very mitochondrial cells outwards.

What ever the result, it will be me.

Old vs New (notes re: self)

Renegade adventurer v. Eccentric gentleman  

Remote and natural v. Walkable villages  

Ragged beards v. Straight razor shaves and mustache  

Hiking shorts and rock t-s v. Tailored suits and fitted shirts  

Free conference pens v. Disposable fountain pens  

Craft beer v. Water and tea  

Fat doobies v. Unfiltered cigarillos  

Freeverse v. Lyrics

DIY repairs v. Takeout mending  

Self-service v. Delegate  

Wash n wear v. Laundry service  

Late night rock v. Early acoustic  

Take away street food v. Long patio lunches  

Midnight movies v. B&W documentaries / matinées

Riding bus bound for appt…

Riding bus bound for appt w/ holistic nutritionalist to learn more about anti-inflam food & thwarting leaky gut 

#healing #Grateful #sickofit

Yup, I stay pretty busy…

Went shopping today. Got a new toothbrush. Yup, I stay pretty busy. Then made greeting cards to mail in time for Lunar new year. Whew.

The bluer i feel…

Note: The bluer i feel, the more exclamation points i use. A coping mechanism to manifest some level of excitement on tough days. #healing!

…a script we write to tell the story of the life we want to believe we live?

Is ones social media broadcast a script we write to tell the story of the life we want to believe we live?

Truth is that i totally do this. While i advocate radical transparency, my life became weird that past couple years and i use social channels differently. I share what i want my life to be (happiness and adventure) to help thwart the struggles.

Complaining or even talking about my situation (FM/ME, CFS, RLS, CSS…) is super boring to me, i post when i need to feel connected to the outside world by sharing happiness and exclamation points (!) … im not be obscure, i am using channels as a latent sorta support group to generate dopamine hits.