Tag Archives: fibro

Healing Journey: Update, Summer 2018

What i want… fully

I want to laugh so hard my face is going to fall off

I want to be hugged and squeezed so hard my ribs might break

I want to be told nice things so much that I blush

I don’t want jealousy or snideness or cynicism or snarkiness or sarcasm

I want kindness and creativity to/for me like I give to others

I want patience, like real honest patience, with no expectations that I will “do anything“ besides bathe and hydrate and rest

I want a safe place where I can spend hours fiddling with papers and pencils and scissors and glue

I want to wake up in the first thing I do is *not* feel pain

I want to lay down on the pillow and fall asleep without twitching and flipping and flopping for hours

I want a night without nightmares

I want to feel that feeling that people call optimism

I want to not think about dying (and relief it would bring) #NotSelfdestructive

I genuinely want people to enjoy the creations I make… and not just people I “know“… like strangers and people “in the wild“

I want respect for my contributions to humanity

I want to rest, like actual invigorating rest where you wake up refreshed

I want gentle adventure

I want to believe what I’m saying and telling other people

I want to cry for an actual reason – not just all the time

I want to nap where I actually fall asleep, not just laying there, staring at the ceiling

I want to be touched, gently

I want to believe in something

I want to be adored

I want to feel important (again)

I know many of these things are called actual true things“ already… But I want to actually legit “feel” them. Approximately 98% of my energy is sucked away by simply getting out of bed, bathing and hydrating and (sorta) pulling myself out of depression.

Ease, Desired

Somebody, kindly lie to me

Tell me I am “going to be OK”

Soon, life will be like driving down Laurel Canyon in 1973

In a Galaxie 500

Top down, radio up

Nothing but possibilities

That I will rest easy… like so many humans do with ease

Someone, kindly lie to me

Whisper I’ve done enough meditating, stretching, giving, therapies, effort

That soon, I will sleep (!) and wake up (!) and every muscle, joint and nerve won’t be on fire

Please, kindly lie to me.

I promise to believe you (for now).

“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.

Auspicious day

9 years ago today, I presented “fuck stats make art” to a full house at SXSW, scored hash brownies and MDMA in Austin, drank whiskey backstage with the black angels. 11 years ago, signed up for Twitter. Also brother Bob’s birthday.

These days, a challenge to just get out of bed for a cup of tea… I’m really trying to “move on”, find “acceptance” and “close the book on old life” but it sure the fck ain’t easy with such wild & fulfilling actions in my past

#thanksforlistening #nosympathy #freehugs #trying

Healing(ish)… &/or surviving

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

##

  • leftantler kbo.
  • ddonat Is there more than just exhaustion? Does the struggle provide meaning?
  • uncleweed@ddonat Nope, all that “whatever doesn’t kill me, makes me stronger” I’m calling bullshit on. It’s just the #fibromyalgia crash carousel of frustration
  • ddonat I’ve been going through deep depression. Eventually, I decided to get help. I’m now medicated, getting counselling and doing my best to get out of it. I hope there is light at the end. I don’t have fibromyalgia, but I hope there is something better through my struggle. I’m a bit proud that I’m still hear fighting.
  • ddonat@ddonat I have hope in that you’re still fighting
  • stew255 KBO – sometimes it’s lower case, some times it’s upper case !
  • nabspat Counting on signals
    Walking, crawling, remembered,
    Forget the weapons
    Hearts and minds, outstretched
    Strip dust and distance, unbound-
    You. Posture beloved.
  • auxinafenica Makes me mad to know awesome people have to go through this. Sending you and whomever struggles with huge fights a huge huge huge hug.

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.

potions, come magic, others benign

#potions, some magic, others utilitarian / also human, mostly benign, often resting

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.