Tag Archives: cfs

Thunderstorms in the Crash Years – Postcard #75

Pod cover - postcards from gravelly beach - thunderstorms in crash years

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.

Always be kind for: Thunder in the Crash Years – Postcard #75
(75MB, 37:09, mp3, stereo)

Continue reading Thunderstorms in the Crash Years – Postcard #75

Auspicious day

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

#thanksforlistening #nosympathy #freehugs #trying

Dog days of healing

Sure don’t enjoy talking about, or even acknowledging cause feels like i’m conceding power & spreading sadness, but… fck me, the fibro + me/cfs etc really got me achey bleary today. I’ll be alright, just saying here rather than hollering out-loud and weirding folks out.

from Instagram: https://www.instagram.com/p/BcSM1LplRyg/

Coordinating toes & bath minerals

Facing Chronic

The thirteenth Doctor concurred with nine of the others… “Get your affairs in order, apply for disability, consider getting a cat.” After which she noted, as most of them do, “You know this syndrome usually affects women, in fact 90% of the time” – my eyes roll inadvertently, i don’t care if she notices. She sends me along with assurances that the extensively-noted side “benefits” of the basket of prescriptions “don’t happen to everyone after all.” Ugh. I am toxic and confused.

Walking to a borrowed home, I rest on every bench, imagining my one-life revolving around reruns of M*A*S*H at 6 and 6:30, Hogan’s Heroes at 8PM. Maybe I’ll start watching that show called Seinfeld I missed in the 90s. Was that the 90s? I count years backwards to figure: there was the Japanese sojourn, the time in Micronesia, grape picking in Germany, hitchhiking Australia…”

I see myself all in reflections: I stoop, I am slow, I resist definition but must acknowledge a choice… I can “sit still” or I can “run away”. Ergo: burn out or fade away. So, I write a will (for the first time) and buy a one-way ticket to a distant city I’ve know nothing about.

potions, come magic, others benign

#potions, some magic, others utilitarian / also human, mostly benign, often resting

Of logistics and papers of health conundrums…


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.

Occasionally, Dave

Waiting…

Challenges of healing include crazy wait times for referrals to specialists and clinics. Called a major specific clinic in Vancouver today to check in on progress:

them “when did you submit referral?”

me “oh more than a year ago”

<hold>

“we found you, yes you were referred May 2015, so that means we’ll be able to see you in…. let me see… May 2017.”

“um thanks”

“we’ll call you then”

#optimism #challenge

##

Comments and annotations:

to Scott Orr: each province runs it slightly differently but, one of the biggest problems is lack of Drs as they can probably make more elsewhere the problem starts there. There are many more efficiencies in the care now (shared xrays and digitized records) for “normal” stuff (breaking a bone) and great programs for critical illness (cancer centres) but i am an odd case and odd cases often slip between cracks. in this case, its a new chronic and complex clinic inside a hospital so its an odd situation all over. The other critical solution is integrated care where mental and physical are not treated entirely differently. Also respect for alternative therapies… but like i said, you break and bone and dang its easy and no cost. But i am weird in more ways than normal :)

to Tristan Schon: truth man, my first year or two of treatment for this conundrum (ME/Fibro/CFS/etc) was all medications which just about turned me to jello, and group cognitive behaviour therapy which managed to freak me out more. The best results ive had (meaning relieving pain and making a bit of brain fog go away) is soaking hot mineral springs and getting Thai massgae where they bend and twist ya. Otherwise, phoenix tears (rick simpson thc oil) and CBD capsules sorta maintain me (though i’ll admit to the occasional diaxapram when i cannot leave the house due to anxiety) – its the last vestige of a formerly absurd scrip roster.

Also, if i’ve learned anything medically through this it is: the brain, gut run the show and the body mostly follows along. You can patch up the body way easier than the fixing gut and/or brain. As a result of the weakness and fogginess from the Fibro and scrips, i’v fainted full out a few times with 3-4 significant head traumas which just complicate the whole thing. Like makes harder to separate what’s what and Dr’s (kinda understandably) cant be awesome at everything.

Etc: Just a note to say, “dont worry about me” i am stick handling the medical system with frustration and annoyance but im happy to be alive and realize how far i’ve come. I live in constant pain and brain/cognitive fog and i require lots of rest but my illness is “weird” and not as easy to fix as a broken bone. Sometimes, i just need to holla aloud and each of you are very kind for checking in and offering support and advice.

Healing: Shirodhara Time (Kerala)

 Shirodhara is a form of Ayurvedic therapy that involves gently pouring liquids over the forehead and can be one of the steps involved in Panchakarma.

Logging medical assortments…

I’ve done (or am currently doing):

* Acupuncture – many many treatments w/ excellent Dr.

* Traditional Chinese Medicine Teas

* Naturopaths

* FM/CSS Specialist at St. Paul’s Rapid Access Specialist Clinic

* Cognitive Behavioural Therapy sessions (many)

* Counsellor/Therapist (who has gone through transformative health events)

* Food elimination (i eat carefully and well #macrobiotic)

* Massage (deep tissue)

* Dry Needling therapy (wicked painful) for pain

* Anti-depressants (along with loads of other meds)

* Daily Walks or swims (as long as i can handle, about :15)

* Hugs (as many as i can get, esp from nieces)

* CT scans/Ultrasounds/MRIs

* Blood screening work of all kinds

* Daily guided Meditations (recorded)

* FM/CSS/CFS etc Support Groups

* Visualization (me being well)

* Phoenix Tears (CBD cannabis extracts)

* Shamanic cleansing

* Long soaks in mineral rich hot springs

* Extended sleeping and resting

Currently Exploring:

* Essential Oils

* Tapping

* Ayurvedic

* Reflexology