As it goes, a photo from 2013 popped into rotation today: me as usual with beard, specs and art in the background so… I snapped another quick similar pose and noted that despite the hard miles of these last seven years – all the hospitals, all the treatments, all the medication, all the stopping medications, all the loss (name it), so many dear ones passing, at least four concussion level falls & crashes (Vancouver, Adelaide, Pacifica, Chiang Mai), so much being gone gone gone lost (not wanting to be found), finding myself in harms way intentionally and otherwise, some terrible decisions, some great decisions, looking anywhere for home, not wanting to be home, forgetting about home – so many > too many places – and then somehow found – with all of “that”, I don’t look all that worse for wear.
The Buddha is quoted as saying, “to gain anything, first you must lose everything” I did and then found out that Buddha never said that – (dang *experts*). Regardless, some of what I lost, I picked back up, other parts I left behind.
Seven years which felt like 17, and i’m only scratched & dented gently & mostly on the inside. It’s good for poetry if nothing else.
70 more to go. Still. At least.
PS Noting that there was a lot of damage and a lot less smiling in “the between years”. Might share at some point, but just came here to say thanks for all your kind words and support. Almost convinced I’m worth it 🙂
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* …)
Shared with respect and understanding that not everyone can do *this* – i have another riff about “why” to seek medical care or healing treatment elsewhere (not in US/Canada in this case). For now, use it if you need it, if not just pass along.
Request wheelchair service well in advance and use it proudly – Besides getting you around the airport, you fast track through security and immigration lines / You are usually be first on and last off the plane, be patient
Fly Tuesdays and Wednesdays mid-day, the airports are most mellow at this time (also tickets usually cheapest)
Dark glasses and earplugs/noise canceling headphones for when you’re in the airport
I use an aisle seat so easier to go to the back galley area and stretch if needed
Lavender oil, compression socks, eye mask and your most comfortable sweater for the flight, dress respectable to increase chance of upgrades (and because you are sharp like that)
When flying far, for me anything longer than three or four hours, book a hotel in (or close by) the airport at the other end – in some cases you can get wheelchair ride to the hotel to crash out and recover. Bonus points to get one with a bathtub
Check your bag, only take a small carry-on with comfort items, don’t try to be that “efficient business traveler” and / or save money with just a carry-on
Tumeric & aspirin and water water water – Did I mention noise canceling headphones?
Put on an audiobook or chill music… Keep the sensory stimulation low by not watching movies especially on the crappy seat back for the videos. For me, the fuzzy screens spin me out plus you see all the other anxiousness and activity going on
Get a credit card which gives you access to airport lounges… go to the airport early, find a quiet corner and hydrate and snack with protein rich foods so when you’re on the plane, you’re not eating the crap or being interrupted… Plus when using wheelchair service, best to go well in advance as some airports have a limited staff performing this service
When you board (using wheelchair you’ll probably be first on) introduce yourself to the flight attendants and mentioned that you may need extra water and make sure you are close to bathroom if you need a little sensory de-stimulation
Not all of these tips are applicable to everyone obviously but for me dealing with ME/Fibro find them to be critically handy
Oh one more thing, seriously don’t try to do a lot of stuff when you travel, for me I go places to find bookstores and quiet coffee shops and simply be somewhere else. Just because you are a “somewhere else” doesn’t mean you suddenly have a bunch of energy to go out and about and meet lots of people. Avoid restaurants at busy times as well…
For me this is sensory overload. All for now, curious to hear your tips or any thoughts about the above. Also this archive is laden with other riffs about healing elsewhere and taking baths.
On my healing journey, i was introduced to Kamalasom Traditional Thai massage (and other therapies) clinic in Phitsanulok, Thailand after the magical Athaya made arrangements.
Since Oct. 2016, so far i have spend 4 extended treatment sessions at this facility.
I’ll explain how the routine goes:
Usually,… first starts with a blood pressure and pulse rate check (keep in mind all this happens in Thai so i just play along with smiles and they are all so nice to me), and brief consult (again, in limited common language).
These days – what with the M.E.(cfs) and Fibro etc. – slowing me down, I find activities to get me out of the house which requires doing not much but sitting.
While pedicures may not seem like a medical therapy, and they’re certainly not, self-care is important part of my healing journey. Indeed, when feeling frustrated and early days of the illness, I made a list of things I can do which involves sitting down, but get me out of the house, and leave me with a feeling of satisfaction. These ideas include: making scrapbooks, watching matinée movies, sitting in parks under a tree, getting my beard professionally trimmed (rather than chopping at it myself), as well as enjoying pedicures.
As such, on all my healing journeys, I find pedicure places to massage and soothe my feet, trim up my nails, and leave with some colour to decorate. (Noting this predilection often elicits a strange response from the practitioners as painted toes aren’t as common for men as they are for women certainly, but I find this practice quite enjoyable nonetheless.)
In some cases, I paint my toes the colour of a local flag or other traditional local schemes (coconut trees, bamboo, waves…), otherwise I generally stick to shades of blue and green. For the record: Indonesia and Thailand definitely have the best pedicure practitioners (is that the proper term?), but I’m also eager to try pedicures in Vietnam as many manicurists in the USA, come from Vietnam.
In India especially, they thought my practice of painting toes was very strange, as such, i did myself (very poorly yet joyfully nonetheless). In Nepal, they were low on supplies but made do with some rugged polish which was moreorless impervious to removal. Once or twice, i enjoyed a pedicure whilst at sea.
I first started this practice at the advice of a remarkable lady who took me for a pedicure in Vancouver before going to Jamaica the first time at that time, I had Jamaican flags painted on my big toes (not sure i have a photo…). Sometimes i take photos of my toes, not all the time, here are some of mah big ole ugly feets. Sometimes i forget and just take snap of the old colour before replacing. No annotations since i don’t expect anyone will look or care, i mean really, its just photos of my feet – ewwww. Continue reading Mementos: Pedicures, various→
Amidst a thunderstorm at 4AM on a balcony in Chiang Mai, Dave discusses – with excessive frankness and emotion – various medical conundrums (Fibromyalgia and CFS-ME) and details the physical feelings of “crash mode” as well as the mental strain in dealing with self de-identification and inter-personal relationships, confusion in seeking help, and various alternative treatments.
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.
9 years ago today, I presented “fuck stats make art” to a full house at SXSW, scored hash brownies and MDMA in Austin, drank whiskey backstage with the black angels. 11 years ago, signed up for Twitter. Also brother Bob’s birthday.
These days, a challenge to just get out of bed for a cup of tea… I’m really trying to “move on”, find “acceptance” and “close the book on old life” but it sure the fck ain’t easy with such wild & fulfilling actions in my past