Tag Archives: fibro

What i want… fully

I want to laugh so hard my face is going to fall off

I want to be hugged and squeezed so hard my ribs might break

I want to be told nice things so much that I blush

I don’t want jealousy or snideness or cynicism or snarkiness or sarcasm

I want kindness and creativity to/for me like I give to others

I want patience, like real honest patience, with no expectations that I will “do anything“ besides bathe and hydrate and rest

I want a safe place where I can spend hours fiddling with papers and pencils and scissors and glue

I want to wake up in the first thing I do is *not* feel pain

I want to lay down on the pillow and fall asleep without twitching and flipping and flopping for hours

I want a night without nightmares

I want to feel that feeling that people call optimism

I want to not think about dying (and relief it would bring) #NotSelfdestructive

I genuinely want people to enjoy the creations I make… and not just people I “know“… like strangers and people “in the wild“

I want respect for my contributions to humanity

I want to rest, like actual invigorating rest where you wake up refreshed

I want gentle adventure

I want to believe what I’m saying and telling other people

I want to cry for an actual reason – not just all the time

I want to nap where I actually fall asleep, not just laying there, staring at the ceiling

I want to be touched, gently

I want to believe in something

I want to be adored

I want to feel important (again)

I know many of these things are called actual true things“ already… But I want to actually legit “feel” them. Approximately 98% of my energy is sucked away by simply getting out of bed, bathing and hydrating and (sorta) pulling myself out of depression.

Ease, Desired

Somebody, kindly lie to me

Tell me I am “going to be OK”

Soon, life will be like driving down Laurel Canyon in 1973

In a Galaxie 500

Top down, radio up

Nothing but possibilities

That I will rest easy… like so many humans do with ease

Someone, kindly lie to me

Whisper I’ve done enough meditating, stretching, giving, therapies, effort

That soon, I will sleep (!) and wake up (!) and every muscle, joint and nerve won’t be on fire

Please, kindly lie to me.

I promise to believe you (for now).

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

Healing(ish)… &/or surviving

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

##

  • leftantler kbo.
  • ddonat Is there more than just exhaustion? Does the struggle provide meaning?
  • uncleweed@ddonat Nope, all that “whatever doesn’t kill me, makes me stronger” I’m calling bullshit on. It’s just the #fibromyalgia crash carousel of frustration
  • ddonat I’ve been going through deep depression. Eventually, I decided to get help. I’m now medicated, getting counselling and doing my best to get out of it. I hope there is light at the end. I don’t have fibromyalgia, but I hope there is something better through my struggle. I’m a bit proud that I’m still hear fighting.
  • ddonat@ddonat I have hope in that you’re still fighting
  • stew255 KBO – sometimes it’s lower case, some times it’s upper case !
  • nabspat Counting on signals
    Walking, crawling, remembered,
    Forget the weapons
    Hearts and minds, outstretched
    Strip dust and distance, unbound-
    You. Posture beloved.
  • auxinafenica Makes me mad to know awesome people have to go through this. Sending you and whomever struggles with huge fights a huge huge huge hug.

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.

#puppy #sadeyes #cuddles

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

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.