Discover and read the best of Twitter Threads about #Spoonie
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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
I know I have real depression. I know this.
Damn if coffee doesn’t help me more than hurt. #myspoons
Damn if coffee doesn’t help me more than hurt. #myspoons
I wonder if getting out of the habit of drinking coffee was a daft choice as a #spoonie with multiple fatigue conditions.
Once my body let me get out of bed today, I figured, let me get coffee while I'm up. And wow.
It didn't fix everything (I’m definitely depressed and need a therapist) but damned if I'm not actually getting things done for the first time in 3 weeks.
It didn't fix everything (I’m definitely depressed and need a therapist) but damned if I'm not actually getting things done for the first time in 3 weeks.
#Disability twitter, #medtwitter , let us have a discussion about patients discussing #MedicalTrauma on here. A Thread:
#chronicillness #ChronicPain #Chroniclife #MedTraumaChat #Spoonie
#chronicillness #ChronicPain #Chroniclife #MedTraumaChat #Spoonie
2) Last night, a fellow advocate posted a very handy guide for HCPs & patients abt treating patients who are trauma survivors: Trauma Informed Care - Disclosures and Care Transitions healthasahumanright.wordpress.com/2018/08/23/tra… #medtwitter #Disability #chronicillness #medtraumachat #spoonie
3) It's a good resource for both #patients & HCPs, please read it if you have a moment.
This led to a helpful discussion about #MedicalTrauma between an HPC and the person who wrote this guide, who has had experiences with this,
#Disability #medtwitter #chronicillness #Spoonie
This led to a helpful discussion about #MedicalTrauma between an HPC and the person who wrote this guide, who has had experiences with this,
#Disability #medtwitter #chronicillness #Spoonie
I signed this petition. I never sign online petitions. But #Afflicted cannot be allowed to stand. chn.ge/2LcFWGj via @Change
Documentaries are meant to give a view of a subject or topic on a FACTUAL basis. Their opinion isn't supposed to be centered unless the subject is themselves.
#Afflicted is heavily slanted toward the erroneous assumption that the chronically ill patients are
faking,
have psychological illnesses rather than physical diseases,
or somehow in denial.
And I ask you- to what end?
faking,
have psychological illnesses rather than physical diseases,
or somehow in denial.
And I ask you- to what end?
With the exception of my closest friend, I didn't know other people had conflicting #chronicillness or more than one. Not until I went online.
#spooniechat
#spooniechat
Then I found people who understood that some suggested solutions aggravate other conditions.
It's a comforting, peaceful break not to have to explain that what solves one illness aggravated another.
It's a comforting, peaceful break not to have to explain that what solves one illness aggravated another.
It's great emotional support to be able to talk about the health issue of the day, to vent and not be accused of wanting something other than understanding & commiseration.
#spooniechat
#spooniechat
Best article I've read in a long time.
The concept of "inflicting help" applies to all areas of business.
The concept of "inflicting help" applies to all areas of business.
And it works to me as a #spoonie - people often Rob me of agency in an effort to help - "try this special diet" - I've already changed it. After discussing it with my DOCTORS.
Easily solved by ASKING instead of inflicting your version of help. I could have then given them dozens of ways to help.
A5. Anticipation of how inconsiderate non-disabled people can be.
At first it was Shane. But then I thought - why am I ashamed that I'm sick? #SpoonieChat
At first it was Shane. But then I thought - why am I ashamed that I'm sick? #SpoonieChat
A5. The answer was that I was ashamed because of how I observed how other people treat disabled or chronically ill people. #SpoonieChat
A5. I didn't want them to treat ME that way.
Then this all came into my consciousness and I realized- I'm not the one who should feel bad.
Being a #spoonie is not a crime. #SpoonieChat
Then this all came into my consciousness and I realized- I'm not the one who should feel bad.
Being a #spoonie is not a crime. #SpoonieChat
#letusmarry I have another story shared with me by a person known as Z for anonymity sake.
Z prepared a statement so I will share their words in screen shot with a transcript to follow.
#spoonie #disabled
Z prepared a statement so I will share their words in screen shot with a transcript to follow.
#spoonie #disabled
Transcript:
Hey! 😊 So, my partner and I have been together for 7 years. He’s at a job right now where he has insurance, but it’s a very unstable industry; he could be let go at any time, with no notice. #letusmarry
Hey! 😊 So, my partner and I have been together for 7 years. He’s at a job right now where he has insurance, but it’s a very unstable industry; he could be let go at any time, with no notice. #letusmarry
His insurance is crap; my medical costs over the next few years could potentially bankrupt us both if we got married. He makes decent money now, but not enough to financially support two people—one of whom is very sick—especially if he loses this job.
#letusmarry
#letusmarry
Somehow this cat annoying me for food has reminded me of when I first dealt with ableism. That ableism was a part of why I tried to work from home.
I was told that I was lazy. That I wasn't contributing to the world (aka capitalism), and how that made me a terrible person. The person who said this, I think they have the same opinion.
They think that everyone, no matter what life's challenges, should not be lazy and contribute to whatever in order to be a good person. Years ago, that was very painful. I knew how hard I'd been trying to be "normal".
This is a great suggestion.
Part of the reason I save my threads is to put them in a format I can turn into blog posts or essays etc.
My problem of course is being a #spoonie with #fatigue issues.
My problem of course is being a #spoonie with #fatigue issues.
If you have an #chronicillness with chronic fatigue and/or #chronicpain that saps your energy & you're an author...
Getting coffee when I was abled:
⭐️get up
⭐️go downstairs
⭐️5 minute job at most
I miss that sometimes. Like today. I've been trying to get a cup of coffee for an hour.
⭐️get up
⭐️go downstairs
⭐️5 minute job at most
I miss that sometimes. Like today. I've been trying to get a cup of coffee for an hour.
How does it take an hour? Let us ask #myspoons.
While I wait. Again. To have a minimal level of functionality in my body.
While I wait. Again. To have a minimal level of functionality in my body.
Getting coffee while in #chronic pain:
✅ 2 dry runs before being able to sit up or stand in minimal pain
✅ Rest periods for each action
✅ Stop by the rest room like an idiot*
✅ Rest from that.
✅ Stairs
✅Rest from that
Almost an hour later? Too fucking late for coffee.
✅ 2 dry runs before being able to sit up or stand in minimal pain
✅ Rest periods for each action
✅ Stop by the rest room like an idiot*
✅ Rest from that.
✅ Stairs
✅Rest from that
Almost an hour later? Too fucking late for coffee.
Today #myspoons are exhausting but improving.
My mood isn't great but I may have solved the dilemma of changing my #spoonie walking regimen.
My mood isn't great but I may have solved the dilemma of changing my #spoonie walking regimen.
Be it so resolved- doctor's orders currently over rule my mother: I cannot walk every day, that is madness.
Not even Naomi strut on walkway speed. Issa no.
Some people are curious how not having my full course of meds keeps me from working full time.
This is where I'll start the story of #myspoons today.
This is where I'll start the story of #myspoons today.
Not that I owe them shit. But maybe you or a #spoonie squad member of ours might find it relevant or helpful.
So in a nutshell, the less pain I'm in? The more I can do.
"But Tinu" some y'all say, "If your work is mostly digital, aren't you good as long as you have a laptop & a computer connection?"
Haha nawl!
"But Tinu" some y'all say, "If your work is mostly digital, aren't you good as long as you have a laptop & a computer connection?"
Haha nawl!
According to one neurosurgeon, my 2012 MRI (the self-same that my neurologist used to diagnose me with conversion disorder/hysteria) shows very clear signs of intracranial hypertension, most notably a pituitary gland that has been flattened into a pancake.
So when in #unrestfilm I say, "I can feel my brain pushing out my eyeballs" that is apparently true.
Of course I have been saying this for years, most notably when at the @GlendaleHosp ER last month, where I was diagnosed with "anxiety" and torticollis (tilting of the neck), even though the issue was that my neck COULD NOT TILT.
I don't even know where to start. I'm having cramps in addition to the rest of my chronic pain life.
Which they confirm are as painful as heart attacks.
Which they confirm are as painful as heart attacks.
My legs have that dull heavy fibro ache. My back hurts, but so does the right hip bone where all my bone marrow aspiration was.
[Bone marrow gives weird GIF results. Multi-colored dancing skeletons holding hands is all I got.]
[Bone marrow gives weird GIF results. Multi-colored dancing skeletons holding hands is all I got.]
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.
a9. ACCESSIBILITY.
Sorry I had to shout but I sure didn't hear when I was one of the abled folk. I did what I THOUGHT would help, but in reality, I had to stop going to my favorite events, to protest, to marches because they are NOT ACCESSIBLE to me. #SpoonieChat
Sorry I had to shout but I sure didn't hear when I was one of the abled folk. I did what I THOUGHT would help, but in reality, I had to stop going to my favorite events, to protest, to marches because they are NOT ACCESSIBLE to me. #SpoonieChat
a9. Example of when an event is somewhat accessible but the instructions are not so much. I pointed this out and got dragged for it of course. #spooniechat
a9. So being the busy-body that I am, I tried to create an organization to make any event we'd want to attend accessible via digital connection. #spooniechat
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.
Lord #myspoons are on one this week. Not quite sure how to describe what I'm going thru.
This entrepreneur re-entry is messing a #spoonie up!
This entrepreneur re-entry is messing a #spoonie up!
So most of y'all know I've been recovering from #chemo & that the #cancer turned up even more fun ailments.
But a chick needs checks. So prematurely back to FT work I go.
But a chick needs checks. So prematurely back to FT work I go.
& Child I'm a hot mess. This paper chase is not going as planned.
Whole lot of chasing, paper at a minimum.
Whole lot of chasing, paper at a minimum.
So after being in bed for almost 2 weeks with my foot elevated post-surgery, hubby & I had date night at the movies. We saw #ProudMary and loved it. We went to one of those movie bistros so that I wouldn’t have to do too much. BUT...1/? #spoonie
As much as our communities have become more “accessible”, they really haven’t. Let’s start with the walk from the car to the theater using my knee scooter. This is a new development and someone thought offset brick was a good idea. It ain’t 2/? #spoonie
Offset brick means that every 3 steps, the wheels of my scooter get pulled in the wrong direction. My crutches were even worse as the unevenness meant walking was uneven so scooter it was. But that’s not all. #spoonie 3/?
Tonight I want to talk about the expectations of people around you when you're a #spoonie.
Especially financially.
Especially financially.
We’ll be doing so alongside a story. So you’ll see why this is on my mind.
In my former life, I was a lucky spoonie. I ran two businesses. I don’t like to talk about how much money I made.
Let’s just say I sent my mother money overseas at least once a month & was the primary breadwinner when she came back.
Let’s just say I sent my mother money overseas at least once a month & was the primary breadwinner when she came back.
Today I'm going to tweet a bit on #mypainday about my experience with chronic pain, bc I think it can be hard to understand if you don't have it.
I'll add some drawings from my pain sketchbook too. Because pictures! ✏
I'll add some drawings from my pain sketchbook too. Because pictures! ✏
I have chronic pain because I smooshed 2 arts of my spine - the lumbar part at the bottom, and the cervical part at the top (my neck). This affects the spinal nerves that control my legs + foot, & arms + hands. So those are the parts that hurt.
I manage my pain with the smallest amount of medication that is still effective on any given day, physio exercises, psychological exercises, & a supportive partner #mypainday
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.
