Years ago when I was at an Ayurveda Health Home in Pokhara, Nepal (which was one of the most wonderful experiences of my life, especially in this “healing journey”) the kind doctor suggested I use turmeric daily.
When I asked her what was the best form/way to purchase this, she said “grow your own” and I explained it was difficult because I had no home, no prospects of getting one, and was rambling and rather lost so a garden was not really possible.
Now. Three years later, I have a life, a home, a garden, and turmeric which is now made into things daily.
Note: many good things about this plant especially anti-inflammatory properties.
Also, in this photo is gorgeous ginger, again freshly harvested.￼
Just a note: As it goes, my baseline for a “good day” is: laundry, compost, dishes, bath time with baby. Everything else is a bonus. Recently I’ve been below baseline which means I have to be extra gentle on myself and more time in a dark calm room. ￼
Folding the laundry also serves as a meditation of sorts. Oh, and (as I talk about *all the time*), we have a magical, super-efficient, washer/dryer all in one which uses the bath water… All of this makes the process easier on me.￼
Stretch-time include: making pickles and writing postcards. (Note both activities have low margin for error and can be done in short times of activity)￼.
Special energy occasions include: making scrapbooks and paintings and poems. I “want” to be doing these things all of the time as my creative brain is going going going but execution is challenging.￼
What I came to say is: laundry is the *only thing* I stay up with & Bathtime with baby is my very favorite thing / 40°.
Bonus: here’s me and the dude go into my seitai treatment (which provides me a little bit of physical reset)￼. ￼
Still in ME/CFS crashmode… nevertheless, managing to write many letters and postcards (In hopes of bringing sparks happiness to others as well as keeping my brain turning) ￼and do bathtime with Ichiro (the best).
Still, gets a bit frustrating being stuck.
Pardon my saying this out loud, just trying to get it out of my head.￼￼￼
Briefly: Annotations and updates about health situation￼
So much goodness in my life these days (wife, baby, home) but still there are things which challenge me so very much —mostly the pain and brain fog and constant unrefreshingness and crippling fatigue of my weird illness (ME-CFS) but no one wants to hear about that 🙂
There are two good things, ergo:
1) I’m *doing better* than I was before the 3 extended Ayurveda in-patient stints (India, Nepal, Sri Lanka) which reset my body￼ and cleared out the copious medication as prescribed to me by doctors in Canada￼/US which almost took me down￼ to bottom of the sea #rough (benzos, opiates, ssris, anti-spasm/etc…)
++ Simplifying life, reducing stress (new life), being in one place all add to this. Keep in mind once “lockdown/quarantine” is over, nothing really changes for me… No big deal, I have hobbies.￼
2) In the wake of the “current public health viral situation” ™, there’s suddenly a lot more attention on my consortium of illnesses due to the “c19 long haulers“ who are experiencing the same sort of symptoms (brain fog, sensory overstimulation, unrefreshing sleep, muscles/joint ache, etc. etc.) and being told by doctors that “there’s nothing wrong“ so suddenly, there’s a lot more science overlapping to folks like me.￼￼￼￼ As such, virologists and super-computers are suddenly pointing powers towards cracking codes which relate to me (no I’m not selfish)￼.
And suddenly there’s all kinds of “main stream“ news coverage and discussion about this illness *and* emerging tests coming from Montréal of all places to determine *real* biomarkers based on “PEM/post exercise malaise”.
I mention main stream because a lot of the coverage and information about my illnesses (ME/CFS and Fibromyalgia and CSS) get overlapped with other “things” and a lot of crap about it being “in your head“ and you get referred to cognitive behavioral therapy and gradiated exercise therapy both of which do more harm than good and are clearly debunked as useful treatments. And holy wow, so much snake oil and magical treatments and gurus out there… People drain their life trying to find a way out of this deep dark well. I know, I am one of them… hundreds of dollars a month on supplements and B vitamin injections and saunas and trigger point injection therapy and blah blah blah.
I’m writing this because after a great art exhibit at buddy’s goat farm – where I really paced myself and was careful and all of that – I’ve been in bed/crash mode for three days (I do the laundry and dishes and take out the trash and compost so better than other times in my life)￼ since.
(Keep in mind various plant medicines which would be rather fortuitous are simply not available in my current geographical situation)￼.
PS this is not a request for advice, sympathy, empathy or whatever… How are you doing?
PPS my heart is happy *and* sometimes my brain works so two out of three ain’t bad￼
More: And yes, sending letters and postcards is *therapy* and brings me joy as I can do this in simple little quiet times, spark my brain and bring happiness to others (I think anyway :-)). ++ Bathtime with Ichiro is great for both of us. The hot deep Japanese ofuro baths are a huge help for me
Note to self: The important thing is not to get frustrated when I “crash” as hard as it is / drink tulsi tea, hot bath, fresh air, low stim
Note: I’m sharing all these links because in the last 3 to 6 months there’s been more “actual science and reporting” than in the previous 6+ years since I was diagnosed (May 2013)
Note: It’s walking through a foggy mysterious painful confusing maze / obstacle course every day > sometimes I find a footing and float myself out into the world – Literally or metaphorically – though I don’t much make a distinction anymore. I’m alive, I have a pen and paper and tasty beverages so I’ll take that
PS in reply to some messages, my diet is aces (hooray miso, genmei, fish, pickles) and I have “done the work” with various eliminations and eating systems over the years.
Yes, counseling, lots of it and very helpful at certain times. (You don’t even have to ask about journals do you?)
There’s an evolving/backfill inspection at my web archive called “healing journey” with more of curious (a lot more in the draft folder including completely parts of my various things at Ayurvedic clinics and hospitals in Thailand
Memo: After frustrations with “one test at a time” I (somehow) went daily to hospital in a anonymous workday city and did 27+ different (sophisticated/specialized) tests especially to illuminate /eliminate other possible diagnoses or identify problems, plus MRI, EEG etc. Also loads of traditional Thai massage (the kind with a beat you up & stretch you out / not *that kind* …)
(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