Discover and read the best of Twitter Threads about #spoonies
Most recents (11)
Updating Twitter disability hashtag thread.
@AllisonR has educated me that I should use Sentence Case for #Accessibility.
@AllisonR has educated me that I should use Sentence Case for #Accessibility.
I have #brainfog so I know I missed someone. Please add your favorite resources as a reply.
Do you want to share your disability experience with others? Try these hashtags.
Amplifying stories
#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Amplifying stories
#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
It hasn't been that bad since I lived alone. #MySpoons are in low key agony. But sharing is distraction.
& Hopefully this helps someone.
& Hopefully this helps someone.
This morning when I woke up, things were already off.
✅I had MENSTRUAL cramps.
✅I still have some flu thing.
✅I overdid it yesterday helping with the kids.
✅My food schedule was off, so
✅My pill schedule was off.
Incoming nightmare amirite?
✅I had MENSTRUAL cramps.
✅I still have some flu thing.
✅I overdid it yesterday helping with the kids.
✅My food schedule was off, so
✅My pill schedule was off.
Incoming nightmare amirite?
I thought I was prepared by the amount of pain I'd be in. So I
➡️did the system check,
➡️got up to visit my poreclean throne,
➡️checked the kids were on schedule,
➡️had one warm me a bagel and
➡️got back in bed.
➡️did the system check,
➡️got up to visit my poreclean throne,
➡️checked the kids were on schedule,
➡️had one warm me a bagel and
➡️got back in bed.
I met friends here too. @Aoiferocksitout, my rock and one of the sweetest, nicest people I ever met.
@alexhaagaard one of my mentors
@painandcats_ who has this great way of putting frustrations I can't even name into words.
@DawnMGibson, who teaches me so much
#spooniechat
@alexhaagaard one of my mentors
@painandcats_ who has this great way of putting frustrations I can't even name into words.
@DawnMGibson, who teaches me so much
#spooniechat
#spooniechat
I also find out other friends are #spoonies or otherwise #disabled through activities online and here.
I also find out other friends are #spoonies or otherwise #disabled through activities online and here.
If I wasn't part of the online community I wouldn't know about
@DisVisibility & her amazing work
@mikes_recovery & changing media perceptions
@Imani_Barbarin who shows me how to be bold when I think I'm inadequate...
I'm getting tired but there's almost 100 others. #spooniechat
@DisVisibility & her amazing work
@mikes_recovery & changing media perceptions
@Imani_Barbarin who shows me how to be bold when I think I'm inadequate...
I'm getting tired but there's almost 100 others. #spooniechat
@Delta Don't treat me like cargo.
In fact, cargo is treated better than I have been. In my last 3 flights, at least once at every stop, I have been overlooked by wheelchair assistance. At least once at every stop I have had to request a wheelchair attendant more than once.
In fact, cargo is treated better than I have been. In my last 3 flights, at least once at every stop, I have been overlooked by wheelchair assistance. At least once at every stop I have had to request a wheelchair attendant more than once.
At least once at every stop I have had to combine the luck of having a delta employee in shouting distance with that employee not being busy with other things in order to be able to move about the gate, whether to get food, drink water, or use the restroom. It is dehumanizing.
At least with my bags, I can find out where my bag is, looking in the app. With your accessibility services, I have gotten used to the cadence of how employees call for a wheelchair attendant, because it has to happen multiple times.
I have just discovered that #Oregon is proposing changes to the state #opioid policy for #chronicpain patients on #medicaid.
I am incensed and I don't even live in Oregon. So let's break this down. #disability #opioidhysteria #spoonies #painpatients #opioidepidemic
Buckle up.
I am incensed and I don't even live in Oregon. So let's break this down. #disability #opioidhysteria #spoonies #painpatients #opioidepidemic
Buckle up.
CW: ableism, bullshit, suicide, swearing
References:
portlandtribune.com/pt/9-news/4013…
nationalpainreport.com/chronic-pain-a…
References:
portlandtribune.com/pt/9-news/4013…
nationalpainreport.com/chronic-pain-a…
To summarize:
-Oregon's Health Evidence Review Commission and Value-based Benefits Subcommittee (HERC and VbBS) are proposing changes to Medicaid
-The changes intend to discontinue long term opioids for chronic pain patients
-Oregon's Health Evidence Review Commission and Value-based Benefits Subcommittee (HERC and VbBS) are proposing changes to Medicaid
-The changes intend to discontinue long term opioids for chronic pain patients
It took How Great Thou Art, Formation & Sorry to get back out of bed.
Pray for me.
Pray for me.
Nothing you want to hear more at the doctor's office than no room to sit down and wait for the doctor.
That was maybe my best urgent care appointment ever. They're giving me a shot for my pain. #ChronicPain
So right now #myspoons are waiting. I spend half my time waiting now that I'm chronically ill.
Let's talk energy conservation.
Let's talk energy conservation.
So first, the best I have ever heard what it's like explained was
🎥 The Spoon Theory by Christine Miserandino - this is where the #Spoonies Community stems from online.
🎥 The Spoon Theory by Christine Miserandino - this is where the #Spoonies Community stems from online.
In short, when I was well I never had to wonder how much energy I had to allocate. It wasn't finite.
Today #myspoons were supportive. I received support from others via Twitter.
We committed & shared stories. I only wish I had the energy to respond when the original poster began to vent.
We committed & shared stories. I only wish I had the energy to respond when the original poster began to vent.
If you ever become a #spoonie with #chronicpain, #fatigue or other conditions that cause you to become #housebound, you may find yourself searching for community, support, tips or other types of help.
The web can provide that.
The web can provide that.
I have to be up late for work to measure certain things in real time. And I realize I haven't talked about #myspoons lately. So here we go.
Today I'm forced again to consider how the world is not built for me. I'm constantly trying to fit it. & it feels like failure.
I say "feels like" of course, because it is Not my failure. It's neglect so consistent deep that we're fooled into thinking it's normal to discount a portion of our society.
Lots of new people, hi! A thing I do every few nights is talk about #myspoons - in #spoonie parlance it’s shorthand referencing energy.
A #spoonie is a person w an invisible #disability. You might not realize it but we’re everywhere. If you're hiding illness you might be one.
Sigh. I think the intent of the boycott were sound “let’s show Twitter what silencing women #onhere looks like” (for one). I get that.
But activism isn’t just about protester. It’s about organizing across factions. It’s about communication. It involves EFFECTIVE strategy.
It also involves information distribution. The person who I thought organized this is really good at that for #TheResistance. But.
