Tag Archives: fibro

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).

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

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  • 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.

from Instagram: https://www.instagram.com/p/BcSM1LplRyg/

Coordinating toes & bath minerals

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

Healing notes from a waiting room

#Grateful to the folks who pick me up when I’m feeling down. Got some good support at brain injury society Victoria yesterday.

In a fog.

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Also, a plumber came to fix garburetor and ended up giving me some sweet OG Kush buds. Any wonder why Im called “uncle weed? #medicine

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Waiting for my medical appointment… & Wilco + Billy Bragg singing Woody Guthrie’s California stars comes on #littlewins

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Heading into medical appointment now which concludes today’s social media broadcasts from your belauguered pal daveo

Carry on etc

Waiting…

Challenges of healing include crazy wait times for referrals to specialists and clinics. Called a major specific clinic in Vancouver today to check in on progress:

them “when did you submit referral?”

me “oh more than a year ago”

<hold>

“we found you, yes you were referred May 2015, so that means we’ll be able to see you in…. let me see… May 2017.”

“um thanks”

“we’ll call you then”

#optimism #challenge

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Comments and annotations:

to Scott Orr: each province runs it slightly differently but, one of the biggest problems is lack of Drs as they can probably make more elsewhere the problem starts there. There are many more efficiencies in the care now (shared xrays and digitized records) for “normal” stuff (breaking a bone) and great programs for critical illness (cancer centres) but i am an odd case and odd cases often slip between cracks. in this case, its a new chronic and complex clinic inside a hospital so its an odd situation all over. The other critical solution is integrated care where mental and physical are not treated entirely differently. Also respect for alternative therapies… but like i said, you break and bone and dang its easy and no cost. But i am weird in more ways than normal :)

to Tristan Schon: truth man, my first year or two of treatment for this conundrum (ME/Fibro/CFS/etc) was all medications which just about turned me to jello, and group cognitive behaviour therapy which managed to freak me out more. The best results ive had (meaning relieving pain and making a bit of brain fog go away) is soaking hot mineral springs and getting Thai massgae where they bend and twist ya. Otherwise, phoenix tears (rick simpson thc oil) and CBD capsules sorta maintain me (though i’ll admit to the occasional diaxapram when i cannot leave the house due to anxiety) – its the last vestige of a formerly absurd scrip roster.

Also, if i’ve learned anything medically through this it is: the brain, gut run the show and the body mostly follows along. You can patch up the body way easier than the fixing gut and/or brain. As a result of the weakness and fogginess from the Fibro and scrips, i’v fainted full out a few times with 3-4 significant head traumas which just complicate the whole thing. Like makes harder to separate what’s what and Dr’s (kinda understandably) cant be awesome at everything.

Etc: Just a note to say, “dont worry about me” i am stick handling the medical system with frustration and annoyance but im happy to be alive and realize how far i’ve come. I live in constant pain and brain/cognitive fog and i require lots of rest but my illness is “weird” and not as easy to fix as a broken bone. Sometimes, i just need to holla aloud and each of you are very kind for checking in and offering support and advice.