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.
Added a few links and comments in a FB flow to send out to the universe.
(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* …)