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Discover and read the best of Twitter Threads about #spoonie

Most recents (24)
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
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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
So right now #myspoons are waiting. I spend half my time waiting now that I'm chronically ill.

Let's talk energy conservation.
So first, the best I have ever heard what it's like explained was

๐ŸŽฅ 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.
Read 26 tweets
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
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
Read 9 tweets
Type foggy. So I'll tell you about #myspoons then it's off to bed with me.

#brainfog
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.
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.
Read 12 tweets
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!
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.
& Child I'm a hot mess. This paper chase is not going as planned.

Whole lot of chasing, paper at a minimum.
Read 15 tweets
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 wouldnโ€™t have to do too much. BUT...1/? #spoonie
As much as our communities have become more โ€œaccessibleโ€, they really havenโ€™t. Letโ€™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 ainโ€™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 thatโ€™s not all. #spoonie 3/?
Read 10 tweets
Tonight I want to talk about the expectations of people around you when you're a #spoonie.

Especially financially.
Weโ€™ll be doing so alongside a story. So youโ€™ll see why this is on my mind.
In my former life, I was a lucky spoonie. I ran two businesses. I donโ€™t like to talk about how much money I made.

Letโ€™s just say I sent my mother money overseas at least once a month & was the primary breadwinner when she came back.
Read 23 tweets
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! โœ A colour pencil drawing on plain paper, of a fallen field maple leaf with a grey pigeon feather threaded through it in two places, via holes on either side of the midvein. The leaf is yellow, brown, and green, in a state of partial decay.
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
Read 39 tweets
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