☕️ Seems most of what I share lately is #coffee 🤔😝🤓
A pick-me-up after unexpected adulting (read : #adulting + #ChronicIllness = #pwME / #MECFS exhaustion) from a surprise plumber I've been trying to schedule 🙌🏽
Wiped out, post-clean-up, BIG #gratitude for amazing #vegan#café au lait (a treat bc usually drink black)! 🥳
Sending good vibes to my kindred invisible-#disability folks 💕
as long as i am crowding up the place asking for wisdom of the crowd
hello fellow #adhd havers, and-or #chronicillness havers, does anyone have like a cleaning checklist that breaks it down weekly for things to do per room/area?
i know that there's an absolute incredible amount of people doing such things on pinterest because they are doing the whole "i am a perfect housekeeper and behold my perfect life" thing but i am more interested in like. people also in these trenches lol. things that other people use and that work for them, basically.
it doesn't have to be the whole big shitwhack of spring cleaning whatnot, but just a checklist of daily cleaning going area by area so that i have a guide to follow that doesn't get me paralyzed in trying to figure it out all myself and screaming in terror at everything that needs to happen lmfao
'We heart our [wheel]chairs. My chair is the last thing I touch before I climb into bed at night, and the first when I climb out. And, let's face it, without our chairs, there'd be no getting out of bed at all for a lot of us. We are not, as we so often see written, "wheelchair bound". We are liberated by our chairs. They give us the freedom to be who we are, and we love them for it.'
— Stella Young, disability rights activist
Can people PLEASE help me contact #churches/ #priests/places of worship/ community groups & ask if they can help me find somewhere to live? If one can’t then they are affiliated with others that might and can ask people in their congregation. Put a plea on their message board irl or Facebook/ whatever online presence they have.
I am living with abuse /neglect and can’t do this anymore.
"Ed Yong, an award-winning science journalist who widely covered the pandemic, recently launched The Spoonbill Club to provide community—and an accessible hobby—for folks with long COVID."
Gift link to a good article on a jump in diagnoses of an autonomic nervous system disorder among young women especially, after COVID. It's called POTS, I developed it too after a viral infection and you definitely do not want it.
It's very much a part of the suite of awful things that can happen with #LongCovid.
"49% of adults in Canada have below high-school literacy levels, and 17% are unable to follow written instructions or read maps."
"Half adults in the U.S. struggle to read a book written for eighth-graders."
If your first instinct is 'why are people ‘dumb’?’ you are elitist and not inclusive. There are plenty of immigrants and others. As web professionals it should be your job to include everyone
"Beth's work must continue..." a message from Laurie Jones, exec dir. of patient advocacy group ME Action, which was co-founded my late partner Beth Mazur.
Laurie bore a daughter shortly after Beth died and named her Georgina Beth - a beautiful tribute.
This attitude that chronic illness is a moral failing is the one that hurts me the most. People seem to feel it more strongly since Covid. Those who know me know how healthy I was… until I wasn’t. Disability can & does strike everyone - you can’t make yourself bulletproof.
I want there to be a bison emoji, for #chronicillness folks. And then we can offer a Higs, which is a very small hug, for people in tender states of pain and/or exhaustion.
Higs are technically Higs Bison hug particles, named after Petra Higs, who once soothed a chronically-ill bison with a very small hug.
“Congrats - you’re old! Maybe this year you will try and be normal again.”
This was a birthday message I received from a relative. They’re referring to my disabilities and to my Covid caution. They consider both “abnormal”.
I’m sick & tired of the insinuation that being disabled means we’re abnormal. That we simply need to “try harder” and we will no longer be sick - or that our illnesses are a personal failing. Temporarily abled people always seem to think it’s OUR fault we are sick.
This assumption stems from people being unable to comprehend that certain illnesses can be permanent but not fatal.
People tend to see illness as two pronged - you get sick and die or you get sick and recover. They don't understand the spectrum that lies in between.
As a result if you become chronically ill - people may be supportive at first but that support wanes when you don't get better. They assume if you're not improving and you haven't died that you're either faking, not really "that sick" or that you don't want to get well.
It's incredibly hurtful considering most chronically ill people spend the vast majority of their energy trying to be well. We do so much to try and retain or improve our baseline - but most of it is stuff others will never see. Compromise & sacrifice are daily occurrences.
The reality is that you can't "try harder" your way out of chronic illness. If you could no one would be sick. We try very hard - but our bodies aren’t well. Just because something doesn't kill you doesn't mean it won't debilitate you and rob you of your quality of life.
I know that's unpleasant for many people to think about - but looking away & refusing to acknowledge our reality doesn't change our situation. It just hurts us and lets you remain in denial. As for faking? Most people are trying to fake being WELL.
Putting on a happy face to make others more comfortable. There's no benefit to faking disabilities. It's a hard life with very little support & many cruel comments like the one I received.
Finally let's consider the word "normal". This person was referring in part to my illnesses (as they see them as an abnormality) and in part to my COVID caution which they see as nonsensical & unnecessary.
Disabled & chronically ill individuals are not abnormal. Health does not equal normalcy.
Health is a temporary state for everyone - not a bar to measure one's worth or commonality with others. It's discriminatory, ableist and cruel to suggest we are somehow abnormal.
As for the Covid caution - I look around at what we are doing and can't understand how anyone could think it abnormal that I'm trying to avoid catching (and spreading) this virus. When did it become "normal" to catch bugs all the time?
When did we decide it was "normal" to throw away our health, the health of the elderly, vulnerable and children? When did we stop caring for other people? We have become a society that looks down on people trying to protect themselves & others. That's ANYTHING but normal.
I don't think anything about the way society at large is responding to covid is “normal" but if it IS? I don't want any part of it. I'm proud to be someone who still cares about what's left of my health. Who cares about the health of others & breaking chains of transmission 1/2