Healing Ramble: #MECFS journey to Thailand, India, Nepal, Sri Lanka and onwards

Kind of nervous about this project but somehow it feels like a good (or important) idea so here we go… &/or just watch :).

I deal with #MECFS a complicated complex and chronic disease (see below). 

After diagnosis eight years ago (2013), I was kinda ground-up by then-local (Vancouver, Canada) medical system through challenging and ill-advised therapies, a litany of dangerous medications and laborious uneventful tests. Plus my entire life seemed to fall apart… ugh. As such I set out on a meandering journey seeking to figure out what was up with my body and brain and try to find a way forward.

In the weeks to come, I am sharing musings about various procedures, treatment modalities, locations and other thoughts in a mixed media blog series which also includes generally lousy photographs, mostly of beverages, post offices, dogs and trains. 

The trip had many locations and stops as I lived out of a backpack, by my wits, and in a complete brain fog and painful fatigue.  Along the way I was keeping both personal diaries, poetry and making paintings as well as compiling logistical notes and records. 

This series will include dossiers from Pacifica, California; Phitsanulok, Thailand; Kerala, India; Dikwella / Galle, Sri Lanka, and maybe dispatches from Indonesia, Jamaica and well not quite sure, we’ll see what comes out of this project – its all a bit heavy.  Includes functional neurology, allopathic bio-tests of all kinds (blood and mechanical), traditional massage, and significantly classical Ayurveda (panchakarma and other series).  

Importantly, there is no “cure” at the end, I’m not a personal life coach, this is just my story and maybe it will provide some sparks of hope or inspiration for others dealing with chronic and complex diseases including the recent onslaught of “long haul” COVID-19. 

I’m also sharing as a sign of respect for the practitioners, doctors, and friends who helped me along the way – and to sort of “close the chapter/book” on that part of my life. I now have a stable home with a sweet wife, adorable baby, and kindly in-laws so well, moving on or whatever. 

Also, really hoping that by floating my story out there, I can say “thanks” to all the scientists, virologists etc. who are diligently working to make a scientific sure. Especially noteworthy is the Open Medicine Foundation (consider donation).

Please note: this video and series is *not* an invitation for unsolicited advice, opinions, secret cures and strategies or whatever. If it’s out there, I’ve seen it, maybe it works for you, I am me. Peace.

Also: there are more historical videos (especially the early dark days filed under “Healing Journey” as well as journals, notes, audio spiels and more. 

Regarding Nomenclature and Illness:

This “consortium” of diseases gets bundled up with a variety of names (and dang, people sure argue about the nomenclature a lot – don’t need to hear about this either). 

In this case, i am using the terms ME-CFS aka Myalgic encephalomyelitis / Chronic fatigue syndrome  筋麻痺性脳脊髄炎 and Fibromyalgia 線維筋痛 all bundled up. Yes many people split hairs about this and say all 3 different diseases, sure probably are but regardless, they are insidious cousins shall we say? 

(Generally thought to be) a viral infection of the nervous system (often vagus nerve) which invokes brain and muscle inflammation and pushes body into a constant nervous sympathetic “fight or flight” mode and fcks with the mitochondrials – the parts of the cell that replenishes energy like a battery. You don’t rest, replenish, rejuvenate, recharge which all results in (a combination of): crippling muscle pain, unrestful fatigue, brain fog, dizzinss/balance conundrums, extreme light and sound sensitivity and over stimulation, and results in patients in “flare” or “crash” mode which can be almost coma-like. Blah blah blah.  No reliable bio-marker tests yet seems to be consistent pattern of an undiagnosed trigger event (surgery? infection? trauma?). Sometimes confused with lyme disease or “waved off” as depression or other harmful misdiagnosis. Energy pacing, safe calm environment, hydration, and rest are critical to basic survival and management. 

Some folks are bed-bound for months or longer at a time, other manage to carry on some sort of life in the outside world. There’s a scale to measure this (i’m around 6.5-7, sometimes 8). I pace my energy carefully, automate what ai can but times when if the house was on fire, not sure i could make it out. All this manifests different in different folks and the stories are *rough* and get worse when doctors and jerks deny, ridicule, condescend and family/friends abandon. That’s all i’m gonna say about this now. 

Treatments, I’ve done (or am currently doing):

  • Acupuncture – many treatments + cupping and electrical stimulation
  • Qi Gong
  • Traditional Chinese Medicine teas
  • Naturopaths and so many supplements (Myer’s cocktail IV + Mito-matrix, Probiotic, Fish Oil, L-Glutamine, D-Ribose, Magnesium, B6, D3, Magnesium, D3, CoEnzyme10, fish oil, Acidophilus, K2, Beta glucan, Folic Acid, Hypericum, Ultra Flora, Tyrosine…)
  • FM/CSS Specialist at St. Paul’s Rapid Access Specialist Clinic
  • Cognitive Behavioural Therapy sessions (too many)
  • Counsellor/Therapist (who has gone through transformative health events herself)
  • Disability Resource Centre counselling and *resources*
  • Food elimination (i eat – generally – carefully and well)
  • Massage (deep tissue, Thai, Balinese, Ayurvedic and other modalities)
  • Dry Needling / Trigger Point injection therapy (wicked painful) for pain, heh
  • Functional Neurology (many treatments, 2 Drs)
  • Chiropractic (several)
  • Prescription bonanza (along with loads of other meds, Benzo, SSRIs, Opiates – ugh, kicked them all)
  • Daily walks and/or swims (as long as i can handle, about :15)
  • Graduated Exercise Therapy (boo)
  • Hugs (as many as i can get, esp from nieces)
  • CT scans/MRIs (to check structural issues)
  • Ultrasounds (soft tissue)
  • Blood screening work of all kinds – name it, done it, seriously
  • Guided Meditations (in-person and recorded)
  • FM/CSS/CFS etc Support Groups
  • Head Injury clinic counselling and testing
  • Psychiatric emergency care (let’s not discuss)
  • Visualization (me *being well*)
  • CBD cannabis extracts (esp: Phoenix Tears aka Ric Simpson oil)
  • Shamanic cleansing(ish)
  • Sauna (many, including in my old VW bus, cool)
  • Trad Sweat lodge ceremony
  • Long soaks in mineral-rich hot springs
  • Extended sleeping and resting
  • Essential oils / aromatherapy
  • Ayurvedic (including 3 extended, in-patient Panchakarma series)
  • Reflexology
  • Tarot cards
  • Psychiatric evaluations (Neuro-psych multiple, comprehensive)
  • Seitai
  • Long hot baths
  • more supplements (long list from PEA to Lithium)
  • now: working on getting Low Dose Naltrexone
  • more i prob forgot (i have a massive dossier and lists which i loathe to open as i’ll never get this series shared)

Don’t @ me with snark or advice {but if you ask in comments below, i’ll direct you to my collections of medical research and try to answer respectful questions}

Come along on a healing ramble (without the healing or the rambling)