Amidst a thunderstorm at 4AM 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. No sympathy or advice requested.
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.
Every day brings
An anniversary of something grand
So much promise and vigor
Graceful ambition, earnest yearning
“Don’t let the past affect the future”
Sound so easy
Until the beige unrelenting present
Brings another morning of pain
So many years now
Trying, climbing, sliding
Up the slides of a slippery well
Fighting, accepting, relenting
Leaves with only
Exhaustion from the inevitable slide
The shaggy dog comes to rest beside
Oddly purring softly, sedately
Sharpening his claws
Glancing up at me
I am left alone
Along my healing journey, I’ve traveled to many countries seeking treatment and relief. In my condition with fibromyalgia and chronic fatigue syndrome / myalgic encephalomyelitis, my energy is very low and I’m easily overwhelmed by the lights, sounds, commotion… and then i crash and am stuck in bed with pain and delirious exhaustion (which depletes neuro-transmitters leading to mood ummm swings).
All of these conundrums make travel by conventional means very difficult. As such, I strategically rely on quiet calm rooms with bathtubs for recovery after long periods of travel. I travel with various items to make myself care more affective and pleasurable, particularly during these hot, therapeutic baths.
Hey Pals, remember a week or so ago when I was feeling so blue and grousing about all this paperwork and the anxiety and the stress it causes…?
Well after a mighty effort yesterday, everything is packaged into four envelopes to mail to various government offices, doctors, insurance companies and so on.
But I’ll tell you, it was no fun emotionally or mentally as i listed all the different doctors, treatments, modalities and so on for the past three years. And the net result is of no benefit to me as they simply take out the Canada pension plan disability pymt from my private insurance disability payment (Which, don’t get me wrong I’m incredibly grateful to receive otherwise I would be living in a tarpaper shack by now).
Telling you this as a “victory lap” since I didn’t go out to celebrate with pints and joints till 4:20 AM (instead took a long hot bath with Japanese bath salts, three kinds of soap and some nice tunes in a dark bathroom)
Plus telling you this so I can let you know I truly appreciate each of you for acknowledging me when I’m losing my shit, offering to help, letting me know that you care and that I’m not invisible.
I know I’m not a real peach to be around these days and as much as I try to be positive and optimistic, there is no mental strength I have to stop wondering “what if?”…
I’ve gotten closer to acceptance in that I accept that I will never be the guy I used to be, and progress will be slow but there is more out there for me to do.
My revolutions are now much more gentle and usually done from the comfort of a bed.
But truly, thanks, I often regret sharing this shit with all of you since everyone has lives and responsibilities and expectations and problems but, it’s what I know how to do.
Did I mention thanks and that I adore you?
I’ll add a photo of something as people seem to enjoy those :-) and now that I’m done, perhaps I’ll share a new batch of music for your ears soon to overwhelm all the negativity, violence and politics and religion and nonsense in the world.