Tag Archives: cfs

Declaration: upon waking up

I wrote this declaration upon waking up…

This past summer, after literally losing my mind, I decided to step into the abyss… Bravely, intrepidly and without compromise.

Holed up at a mountain cabin while chaos swirled around my lives, I listened to the message from records from decades ago, I hot boxed my beloved bus were so many happy memories happened, I reunited with charming characters from my past and even better, met their children who are adults (moreso than me anyway), then with a solid head of mushrooms and MDMA, this plan came to me.

On a psychedelic carpet, i clicked enough buttons on the Internet, to purchase an abstract variety of plane tickets to send me a round like a manic boardgame in search of a new flavour of truth and reality.

Salt Lake to Las Vegas to Pacifica to Chaing Mai and now to this anonymous city where I’m practically the only foreigner in a city mourning the death of their beloved King, I’m finding comfort and solace and healing.

In scant days, I will leave again into uncharted territory, beyond what science and reason says is capable of this haggard body but I refuse to except anything but finding some sense of joy.

I can live with pain I accept, but I cannot accept living without my brain and without my heart and soul. I am born to give, exist to share, and I am empty without those.

Without a safety net, without and emergency escape route, without language skills, without the strength to punch my way out of a wet paper bag, I have built a tiny universe and painted the walls just the colour I chose.

Who will return to the West Coast on December 6? what will I look like? Who will I be? I am indifferent to all of these questions as the destination is simply a byproduct of the journey.

The journey is me and I am the journey. Brick by brick, I will gently apply the mortar to rebuild, to renew, to replenish and regenerate from the very mitochondrial cells outwards.

What ever the result, it will be me.

Anything I can do to make your life better?

So how are you doing? Anything I can do to make your life better?

#

Grateful, the world to see… #thanksgiving

May I continue? By the way, I don’t do the feasting part of Thanksgiving these days but I like being thankful for stuff.

I am thankful for art and the artists who create and inspire me and others by dedicating themselves honestly to elevating above craft into making things for the future

I’m grateful for music, especially played by diligent up-and-coming bands who often become friends (I love being your fan), especially all the people over the years who said “dude you got to have my cassette and/or CD) I’ve captured and collected your efforts in a shoebox.

I’m grateful for the trains that still exist in the World to slowly rolled me to elsewhere and that the idea of travelling open oceans is in a state room in a freighter still exists.

I’m thankful for the 100 or so practicum students from all over the world I had the privilege of mentoring through many jobs, to help launch their dreams, careers, travelling, creation etc.– you “young folk” </ Old man voice> catch too much crap from crusty old bastards but I am 100% in belief that you will change the world for the better.

I am thankful for the few other people in the world who still send postal mail with thank you letters with interesting and heartfelt stories.

I am thankful I wasn’t too much of a jerk throughout my life or this healing journey would be super lonely. Along with this, I’m thankful I did all of those talks (mostly for free) to all sorts of groups (not just bigshot gigs) as I met so many lovely people who still send me messages despite perhaps barely meeting me in real life.

I’m grateful and thankful I visited my beloved old Volkswagen bus (hot boxed of course… It’s a sauna) and thankful that I documented and organized and stored so many artefacts from my previous life as they colour who I am today. Noteworthy especially is that killer stash of records unearth of late. Also, I have every letter any of you ever wrote to me, organized, sorted and stored.

I’m thankful for having folks and friends scattered all over the world who make my life more diverse, colourful and interesting — you give me sparks and dreams of adventures — virtual and/or meat space.

Old vs New (notes re: self)

Renegade adventurer v. Eccentric gentleman  

Remote and natural v. Walkable villages  

Ragged beards v. Straight razor shaves and mustache  

Hiking shorts and rock t-s v. Tailored suits and fitted shirts  

Free conference pens v. Disposable fountain pens  

Craft beer v. Water and tea  

Fat doobies v. Unfiltered cigarillos  

Freeverse v. Lyrics

DIY repairs v. Takeout mending  

Self-service v. Delegate  

Wash n wear v. Laundry service  

Late night rock v. Early acoustic  

Take away street food v. Long patio lunches  

Midnight movies v. B&W documentaries / matinées

Did I mention thanks and that I adore you? #paperwork #blues

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

Canada needs a tropical province…

I really think Canada needs a tropical province or a relationship with a tropical republic, or possibly a “special relationship” with a former commonwealth country like Belize. Can we adopt?

Think of all the money which goes from Canada to Mexico or the southern United States each year. Could be put to better use and help an emerging country find its feet.

And no, I am not talking about “colonies” which the US often calls territories or protectorates including Puerto Rico, Guam, Northern Mariana islands, American Samoa… These folks get to vote for Congress person but their Congress person does not get to vote in Congress. How is this acceptable? #Digression

My reasons are somewhat selfish and not with my current health and syndromes, cold rainy weather sucks and running away to warmer foreign countries causes contention with various agencies and so on…

Annotations: 

Neal Cropper The Turks Caicos islands have asked to be annexed by Canada on the past I believe.

Dave: Read the article and video and wow, like no information except naysaying. and “oh we’ll have to ask the queeen to surrender her asset” ?? wtf is this still colonial times? and John Baird dismissing it out of hand prob because he’s not a paid consultant for T&C. This needs proper consideration and discourse, not dismissal out of hand. The money alone which is leaked to US/Mexico is ridiculous. And this doesn’t have to be a province or territory per se, more like a “common law” relationship, than a marriage.

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

i’m super wanna be over…

i’m super wanna be over with this disability in general, but especially done with the fucking paperwork that endlessly comes along.

##

PS I really hate it when I say anything about this publicly because I hate being a downer but, it’s truthfully not just the paperwork (of course) that’s just one other thing that piled on top of all the insomnia and muscle spasms and pain and confusion and brain fog.

Now that I’ve been prescription med free for over a year, I have more brain, but also more pain.

And in my somewhat bullshit “journey towards acceptance”, I’m trying not to be so coy and vague and take all this on myself. Truthfully it’s more than I can handle.

Just thanks to you each for listening and still caring about this broke down old dude.

I had a few super great days, the best I’ve had in sometime but then the inevitable crash happens and payback is a fucking bitch.

#Spoonies

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.

Riding bus bound for appt…

Riding bus bound for appt w/ holistic nutritionalist to learn more about anti-inflam food & thwarting leaky gut 

#healing #Grateful #sickofit