(from a Twtr thread, here for posterity) note: find a better way to archive all this if possible
One of the most jarring and upsetting things I’ve learned as part of this #longcovid journey is the entire world of post-viral and post-infectious illness. One of these, a neuroimmune condition called myalgic encephalomyelitis (ME), is particularly horrific 1/
Hello Hannah, thank you for this respectful conversation. In 2013, my life changed overnight from ME. I was super active and invincible and it completely wiped me out… Was in bed in a fog for weeks / months then years on end. I do a little bit better now, there’s no cure…
2/ doctors shuffle you around to specialists, disbelieve you, read outdated research about “graduated exercise therapy”, send you to a psychiatrists and cognitive behavioral therapy classes, &/or just string you out on various prescriptions (ssris, benzoa, opiates), it’s brutal.
3/ So many people simply “vanish” from life, there’s scant “enthusiasm” from public supoort very little fundraising, nothing but hassle from insurance and government disability programs, Comedians joke about it, friends disappear, loads of “snake oil” and so much disrespect…
4/ Each night is an awake twisting fog, there’s no refreshing sleep, the first sensations in the “morning” or “oh my Gosh, everything hurts and where am I and what the fck has happened to my life?” and it takes everything you have just to keep clean and fed and pushing on.
5/ I lost everything – career, confidence, love, enthusiasm, hobbies, friends… Somehow some people stuck around and I took myself to a far away place to an Ayurvedic clinic to sort of “reset” myself. Then, build a new life within these new boundaries.
6/ With the current pandemic, there’s a lot more awareness suddenly springing up and I very much hope that with all of the researchers and super computers paying attention to these weird cracks in physiology, something emerges. So many lives simply become invisible from this.
7/ Many deplete any savings chasing down cures at “famous” institutes and hospitals, try every sort of supplement, IV, natural and otherwise, various therapies – anything which might give a glint of hope, then again “crash“ and fall down into sadness. Ends so badly for many.
8/ There’s an organization called “open medicine foundation” doing wonderful work and coalescing top researchers around the world and advocating for patients. From my view, more has been done in the last 2 years than the *previous however many* / A fine organization to support.
9/ There is a documentary film by @jenbrea called Unrest which raised a lot of awareness / it’s super hard (for me anyway) to watch as well, I see myself and ummm, it’s really hard. Dreams broken and infinite lost potential. The stories are important, real people, real sadness.
10/ I don’t know wish this absurd illness (alternatively called something which minimizes it and another name which is almost impossible to say!) on anyone. Sending these note out into the world in hopes of fostering understanding and please please please a cure. #Fondly
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.
Background: Along my healing journey, I received treatment at Dissanayake Ayurvedic Hospital in Galle, Sri Lanka, a government-run, pay-what-you-can facility.
I attended this hospital for Ayurveda treatments for some weeks during Dec. 2017-Jan 2018 and was treated by a kind practitioner called Ruwan. I also met with a wise Doctor who recommended I do a longer in-patient Panchakarma program here, but… some life situations changed and i didn’t do the program. I saw the rooms and talked to the doctors and while it was very spartan and not cozy, the staff seemed to be very intent on their practice. Continue reading Healing Story: Dissanayake Ayurvedic Hospital, Galle (Sri Lanka)→
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.
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.
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”
“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.”
“we’ll call you then”
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.
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.