Today went “over the wall“ for some seitai treatment / stiiiiilllll trying to bust outta this ME/CFS crashmode.
Good news is: my head and heart are so happy and filled with wonder every day. And I’m managing a few little creative dispatches through the fog. Thanks to each of you for chiming in, so very noticed.
PS I wish all medical offices were this level of aesthetic loveliness as well as phenomenal hi-fi system and exceptional records
Whilst out, noticed a cute house café nestled in amongst some concrete buildings with an orange bicycle in front. I found that if you stay focused on the goal, I miss all the good stuff which get filed as “distractions”… It turns out the things like hobbies and digressions are the best parts of life.
Anyhow, stopped in for some “safety Ramen” at really the best place > one owner operator and everything is just “perfect” – the seats, the size, the decorations, the music, everything tidy and just well thought out and of course the Ramen is top level. (Brian Ceci can attest ;)).
Ichiro was as always his jolly self. He also had some injections today and got to say hello to the doctor that helped bring him into the world. She’s (Moe-sensei) a really wonderful lady and she was so happy to see him growing up so happy, healthy and strong.
Recap: Haven’t left the house for sometime so three stops today, quite significant.
Next activity: on the 18th I will be “socially distant Santa Claus” for a few kids at a local community center. Yes I will be using natural beard. And we ordered appropriate costume, the “luxury/deluxe” version but I would describe it more just as “adequate but with some extra gold bits (and a little cape!)”. Ryoko Olson will assist me in a super cute red velvet dress, likely with the little dude on her back. I may take a clipboard to take notes about the children’s requests before I tell them “no, none of this is possible, here is an orange :-)”.
Back home, warming up – it’s sunny but chilly and even a few flakes of snow (!), folded laundry, made tea, a few dishes to wash, have something to write about Vincent van Gogh, and some Hokusai postcards. Oh and i hope to sleep, really – I mean I can dream, right?
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)￼. ￼
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* …)
Amidst the “specialness” of life – which included of late:
trip to Nagasaki and all the glorious trains, building and museums (well documented elsewhere)
Mae Maes spring concert in Tamano (artifacts to follow)
baby coming! (and related prep)
10 years anniversary of Vancouver Olympics (which was such a big deal for me and i meant to do “something” to commemorate, but ya know, this feeling was overridden with ambivalence (but do have some notes and copy/pastes i’ll get to before 11th anniversary)
– is the “regular out n abouts” of life. These moments are treasure and, as memory fades, are quickly lost to the “exciting bits” never the less, i capture and archive for me, for others like me, for the little one, for the future, for the process. You know this already so behold, more of the usual: trams, coffees, meals, and various items spotted in the wild.
Ergo, just things, observed / scenes of life in Okayama, en route to “seitai” treatment session:
* fine bicycle (wagyu burgers in bg) at sunny intersection
* non-chronological aside but related / wagyu burger (with Ted) / as an additional aside, compared to 25+ years ago when I was first year, so much more international food available, to go along with the obviously fantastic Japanese native food… Would having pizzas, mighty burgers, lots of India/Nepal food, there are Mexican food places but i don’t wanna be disappointed – Anyway we do not lack for fantastic food even in our small city
* angled manshon apartment bldg, striking against the sky (this is parking lot for seitai sensei)