Discover and read the best of Twitter Threads about #MySpoons

Most recents (24)

I really wish I knew how to explain to people that I’m not being difficult when I say things like

“I have no idea if I can do that thing because I don’t know until I wake up that day whether my body will cooperate.”

(#MySpoons thread.)
I’m really lucky.

When I make permanent friends? I make outstanding friends.

Truly I have great people around

... can’t imagine what it must be like to have the people who are supposed to love you?

Be difficult about an aspect of your daily life.
My friends were not difficult today.

At all. I just wish I knew how to handle these things better.

I thought I would’ve had more practice by now.
Read 31 tweets
Here's my latest* update to my vetted collection of Twitter Disability and Chronic Illness hashtags. Please share it!

Thank you :-) Graffiti background. Foreground in black letters on a  white background to the left reads “Twitter Disability and Chronic Illness Hashtags”<br />
This collection is current as of 01.30.20, previous Twitter update 09.11.19.

There's a PDF version coming up this weekend, to be posted to my Kofi profile. I'll add the link toward the end when it goes up, after the questions, where you can also sign up for email updates.
This version has added

- community suggestions,
- mental health hashtags,
- Medical crowdfunding hashtags,
- and a section for cancer-related hashtags.
Read 84 tweets
Here’s my latest update to the list of Twitter #Disability & #ChronicIllness Hashtags.

- previous update 02.24.19 -

Please share it! Thank you. :-)

@ImageAltText Graffiti background. Foreground in white letters on a  red background to the left reads “Twitter Disability and Chronic Illness Hashtags”
There will be a PDF version up for download on my Ko-fi, likely tomorrow morning. The link is at the end.
Hashtags For Personal Narratives.

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

Read 58 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.


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

Read 45 tweets
#MySpoons are all fucked up.

I can't explain the level of hurt- separately & all at once- for being a Black dark-skinned disabled woman.

Right before a (minor but still!) surgery, no less.
Y'all know me.

I talk a lot about having #cancer. Especially after finding out the remission I celebrated is not really remission.

I talk about #InvisibleDisabilities.

But I couldn't get into this surgery.
And of course that's my right.

I share what I share when I feel it will help people & not hurt me.
Read 26 tweets
#MySpoons were legit puzzled.
I sat here for an hour, super confused.

Why I was struggling to get up from my bed & walk across the room to the fridge for water?
The sad thing was I kept nodding off and shaking myself awake because I needed to take my medicine.
Read 15 tweets
Things I didn’t enjoy at the oncologist: a guy in the lobby saying he deserved temporary disability tags for his car but other people must be faking.
“I’m already mad about people misusing the spaces. But I need it.”

Meanwhile you can’t tell he’s a cancer patient with fatigue by eyeballing him.
I started to say something but

a- fatigued
b- by myself while he was with people
c- I’m not the asshole whisperer.
Read 6 tweets
I tried to watch a show without captions in a noisy area and I honestly wanted to cry.

Everyone should be able to show up & participate in the world.

Making it worse was that I just wanted to relax after a super-stressful week, as much as I could.

Just not think about pain for a few minutes.
They always make it about us wanting one more things or "well we have additional accomodations you can ask for."
Read 18 tweets
Can I be an American born Nigerian for five minutes?

Around 4th grade my guidance counselor asked me what I did when I got home from school.

THEY asked ME.
I'd been seeing this old white dude on the regular. Didn't occur to me to lie. I thought my life was NORMAL.
Read 24 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
My body hates the morning.

But sometimes the kids wake me with their "going to school" rumbunction and I realize I miss it as much.
Being awakened too early is hell though. #MySpoons will be broken all day.
*Rambunction. But rumbunction sounds nice. Might be a bit early but still.
Read 3 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.

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

Read 29 tweets
Still sick. I made a recording of my voice - keep in mind this is an *improvement* - four days in.
And I had the flu shot. Maybe a week and a half before I got muggle sick.

Let’s talk about #MySpooms and being “muggle sick.”
This is what some of we #spoonies call it when we get viruses 🦠 on top of chronic illnesses.
Read 26 tweets
Tonight I'm thinking of how #MySpoons have an emotional connection to my physical pain - and lessening too.
My youngest sister, the one I live with, taught me this incredible lesson. Namely that it's okay if I just can't whatever right now and she'll love me anyway.

That people will love me anyway.
I've noticed lately that when I embrace that? My stress lessens, which lessens my pain, to the extent that stress makes it worse.
Read 11 tweets
So my experience that went wrong today was sit upright in a reclining chair for 5 hours.

Now? Such a huge spike in pain that I had to go lay in my bed.
#MySpoons are doing the angry dance. Extra dose of barely-helpful meds to the....

What’s is it called when something doesn’t help but might prevent a situation from getting worse?

To the that. I can’t even say “rescue.”
The worst pain is at the back of my legs. What interesting thing can I do laying in my stomach without a partner?

I’m tired of reading, podcasts, tv, music. I want to write.
Read 7 tweets
The sick part is that many of us being denied effective pain medication, to the extent that we can no longer work, don’t want or seek the high dose that is often referenced.
Today #myspoons were so fully depleted that after hours trying to recover, I still can’t fall asleep.

Too much pain.
I’m pretty good with words. Not to toot my own horn but I’ve been winning awards for it since grade school.

I mention that not only to brag.
Read 17 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

Read 16 tweets
Friends, Romans, Country ass folks? This week all #myspoons threads will be cross-postedto @WeAreDisabled.
It's a cool project you can learn more about at -a snapshot of @disabled people's lives & experiences, hosted for a week at a time by various disabled people.
I'm also going to be re-postimg some of my old cancer posts from
Read 5 tweets
I know I have real depression. I know this.

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.
Read 6 tweets
I stayed up & did all my work so I can get some much needed rest today & dammit all I want is to find a comfortable position that doesn't make my legs hurt or for the medicine to work or for the muscle relaxer to knock me TF out or for the Biofreeze to work!
#fml #chronicpain
One of those days that I'm glad I documented my frustrations with falling asleep.

Because now I can project the minimum amount of time I need to stay asleep while the house is quiet.
Read 9 tweets
Why do I always try to work when the kids are home? I got more done from 3am to 5 am than I have since 4 on until now. UGH.

It's not their fault either.
I used to require living alone or living with people who are really quiet 8 to 10 hours a day. Now I just don't have the stamina to stay focused on any creative activity.
I have to stop letting myself think any day is a exception when I will get work done with them here. If it's not interruptions, it's the noise level or some urgent issue.
Read 5 tweets
Sometimes I think the most terrible thing about not being able to sleep when you'd like to is the fact that you also can't really do anything else.
Can't concentrate on TV.

Can't focus enough to write more than a few tweets.

Can't do any work a reasonable person would pay you to do.
Reading- or sometimes just moving your head too much -starts a vestibular migraine.

Which. Is the hardest migraine for me. I couldn't even miveenough to run into a wall to knock myself out.
Read 4 tweets
It hasn't been that bad since I lived alone. #MySpoons are in low key agony. But sharing is distraction.

& 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 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.
Read 19 tweets
I can... Do things. #spoonielife #myspoons

(That's a GIF of ladies dancing in a studio with the caption Namaste.)
So I went to this place for an same-day urgent consult.

They gave me the pain meds I was out of - Celebrex & Gabapentin. Then they gave me a shot for my new pain and a steroid.

I feel... Brand new. 🐣

(That's an emoji of a chick still an egg.)
I take that back.

I feel like me.
Read 29 tweets

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