Discover and read the best of Twitter Threads about #Spoonie

Most recents (24)

My birthday, a cultural and #MySpoons thread.

[GIF: Beyoncรฉ & two other dancers birthday dancing because it's my Birthday Month n eryting.]
There's two main reasons I make a huge deal out of my birthday.

One's cultural, one's ... complicated but kinda tied it my whole #ChronicaIyIll deal.
Let's do cultural first. For my folk, celebrating your birthday has levels;

๐Ÿ‘‰๐Ÿพ gratitude for surviving to the age you are
๐Ÿ‘‰๐Ÿพ an occasion for us to get together & give/receive literal money to our community
๐Ÿ‘‰๐Ÿพ sometimes spiritual milestones
Read 17 tweets
To all: This is a thread of msgs I left in reply on a TW re: college loan forgiveness. To OP TW some said: trade school, take longer, work FT & do 2 courses @ time, etc. Below, in comments, was part of my replies using some of #mystory. #Twitter #work #school #loandebt #college
2/ Since I'm trying to create my own thread to keep msgs together, will add more detail. Born severely premature. Brain injury. CP, Scoliosis, Sciatica, learning disabilities. #Canadian #beginning #life #bio #prolouge #studentdebt #twitter #college
3/ Frm 5-25, was victim of long-term child abuse: sexual/physical, medical; beatings; emotional neglect, verbal & psychological torture, captivity, near rape a few times, & oral rape via family, educators, & strangers. #ChildAbuse #Twitter #Negect #Missing #ChildhoodSexualAbuse
Read 20 tweets
Here's my latest update to my collection of active Twitter #Disability & #ChronicIllness Hashtags - previous update 12.13.18.

Please share it. Thank you! :-) Light blue sand background has the # drawn in the sand to the right. The left side is blank. <br />
<br />
At the bottom of the picture, text reads
Portable PDF version will appear on my Kofi in the next day or so.

Link: ko-fi.com/TinuWrites
HASHTAGS FOR PERSONAL NARRATIVES

These hashtags are for sharing your stories & experiences. Also helpful for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 45 tweets
Just waiting to have enough energy to shower. Which I didn't know was a thing. Or that one may have to choose it over eating.

So just every day #spoonie stuff.
Oh and trying not to scratch out my eyes. Because that's part of my life now I guess.

Which is why I've been picking eating, since I can't seem to take Benadryl with all this other rap without Something Bad happening unless I eat.
Did I mention I hate pills. Or that I have to take a cajillion of them every day.
Read 4 tweets
Decided on my project for #BlackHistoryMonth 2019. Reads: Black History Month in large block letters with a colored inside and a hollow outside. Black is red inside, Hustory is green inside. Both words are in the foreground. Month is in the background. The graphic is transparent.
Once a week I'll write briefly about up to 7 historical/famous figures in the Diaspora who

- had/have #ChronicIllness
- spoke of the possibility of being in #DiagnosticLimbo
- or were considered #Disabled.
Why once a week and not every day?

I'm a #Spoonie dammit. I have no clue what day or time I'll have energy.

But I can commit to weekly.

The whole thing is for you to see that we're everywhere. For you to SEE us.

So let's get it.
Read 15 tweets
My holiday spoons are fickle. #MySpoons
Yesterday - the day after I ran out of my pain meds - I pulled a muscle behind my boob.

Thank goodness #spoonie Twitter was here to rescue me.
But now I get to spend Christmas

- in more pain than usual
- with more #painsomnia
- and less medication & other methods of easing the pain
Read 12 tweets
Here's my lastest update Twitter #Disability & #ChronicIllness Hashtags - previous update 10.17.18

Please share it.
I'll have a PDF version of this for download on my Ko-fi by this time tomorrow. Link at the end.
HASHTAGS FOR PERSONAL NARRATIVES

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 29 tweets
I was going to do this hours ago. Then I thought about stories from my life and I was overwhelmed.

Also I hate to being up problems without talking a little about solutions.
So toward the end I'll talk about some things I've tried to fight back with varying levels of success.
Read 56 tweets
A5. From decades of activism through my other identities & my cultural background, itโ€™s easier for me to see how everything is related.

Illnesses that are portrayed in media anywhere in the ballpark of properly get attention & research.
#MedTraumaChat
A5. Thereโ€™s so much silence around #cancer that we only see one small sliver on tv.

And that one small sliver tends to correspond to the outsider view people have.
#MedTraumaChat
A5. Invisible disabilities have almost zero visibility. And when we tell the stories ourselves & via insiders like with @jenbrea in #Unrest we get accurate narratives that illuminate.

#MedTraumaChat
Read 7 tweets
starting the day with drugs is not as fun as it sounds #chronicpain
strong cannabis cookie, 1/2 soma, 600 mg ibuprofen, 1/2 a joint, heating pad, and now we wait. #migrainemorning #backpain #walkinglikeagnoll
a whole nother joint and several hours later, i can move and managed a shower! now to eat breakfast and then probably rest again. I've got schoolwork to do, laundry and dishes piling up... i will do what i can do today #spoonie #chronicillness
Read 12 tweets
Updating Twitter disability hashtag thread.

@AllisonR has educated me that I should use Sentence Case for #Accessibility. Graphic reads: # symbol followed by the word Hashtag in white lettering on a blue background.
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
Read 16 tweets
I know I have real depression. I know this.

Damn if coffee doesnโ€™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 (Iโ€™m definitely depressed and need a therapist) but damned if I'm not actually getting things done for the first time in 3 weeks.
Read 6 tweets
#Disability twitter, #medtwitter , let us have a discussion about patients discussing #MedicalTrauma on here. A Thread:
#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/traโ€ฆ #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
Read 13 tweets
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?
Read 13 tweets
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
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 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
Read 4 tweets
Best article I've read in a long time.

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.
Read 7 tweets
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
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
Read 3 tweets
#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
Transcript:
Hey! ๐Ÿ˜Š So, my partner and I have been together for 7 years. Heโ€™s at a job right now where he has insurance, but itโ€™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 peopleโ€”one of whom is very sickโ€”especially if he loses this job.
#letusmarry
Read 10 tweets
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.
If you have an #chronicillness with chronic fatigue and/or #chronicpain that saps your energy & you're an author...
Read 7 tweets
Getting coffee when I was abled:
โญ๏ธget up
โญ๏ธgo downstairs
โญ๏ธ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.
Getting coffee while in #chronic pain:

โœ… 2 dry runs before being able to sit up or stand in minimal pain
โœ… Rest periods for each action
โœ… Stop by the rest room like an idiot*
โœ… Rest from that.
โœ… Stairs
โœ…Rest from that

Almost an hour later? Too fucking late for coffee.
Read 9 tweets
Today #myspoons are exhausting but improving.

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.
Read 12 tweets
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.
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!
Read 22 tweets
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.
Read 18 tweets
I'm losing #myspoons tonight.

[Lady wrestler tantrum GIF]
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.
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.]
Read 7 tweets

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