Discover and read the best of Twitter Threads about #MySpoons
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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
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 weatedisabled.wordoress.com -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 tinustuff.com.
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.
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
#fml #chronicpain
Fuuuuuuccccccck!!!!!!
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.
Because now I can project the minimum amount of time I need to stay asleep while the house is quiet.
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.
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.
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.
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.
Which. Is the hardest migraine for me. I couldn't even miveenough to run into a wall to knock myself out.
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 can... Do things. #spoonielife #myspoons
(That's a GIF of ladies dancing in a studio with the caption Namaste.)
(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.)
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.
I feel like me.
I hate the dull dragging all-over ache the worst. There's no comfortable sleep position.
There's just hoping the medication kicks in at some point...
There's just hoping the medication kicks in at some point...
#MySpoons are not providing asolution today. All I can say is a- what a mercy it is when the fatigue is down when a pain is up and b- sometimes all you can do is ride it out.
Distractions help so much when you're trying to ride out pain. If laughing doesn't hurt, comedies. If anxiety isn't a factor? Thrillers, fast-paced dramas, intricate plots.
Watched the twin sets yesterday. Barely functional today. So much to do.
These are the days of #myspoons - I have like 2 today.
These are the days of #myspoons - I have like 2 today.
But at least there's hope for my health insurance from another source.
Younger twin sets birthday tomorrow. Never been too broke to shower them with gifts. Lucky they are good kids who won't care.
On #myspoons today I want to talk about other people's expectations & ableism about your symptoms.
The ones that plague me the most are #fatigue & #chronicpain. I went from writing 1800 words an hour, up to 4x daily?
To falling asleep while writing a single tweet. & Still needing at least 5 minutes of rest after sometimes.
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!
Monday was the weirdest greatest awful fantastic day. #MySpoons are legit confused.
So I know Mercury goes Retrograde on the 22nd. So my life has been about legit getting as many things airborne as possible before communications fail.
Sunday night I kept trying to sleep but was plagued by night mares. The 3rd was so terrifying I was afraid to sleep again.
Still not recovered from going to the airport & the day before, the damn grocery store.
Shoulda stayed in bed. Here's why I'm happy I didn't.
#mypaindiary #SHAREOURPAIN
Shoulda stayed in bed. Here's why I'm happy I didn't.
#mypaindiary #SHAREOURPAIN
As I've probably mentioned. #myspoons seem to last longer when I'm in a good mood.
& I'm in one today because of the people I live with.
& I'm in one today because of the people I live with.
This morning I didn't have to lift a finger, because their Dad woke them up.
Trapped in bed. Do I stop making plans?
Overdid it today, a happy day where I got to see my niece & nephews reunited with their Dad.
Overdid it today, a happy day where I got to see my niece & nephews reunited with their Dad.
Witnessing the screaming, running, crying reunions were worth every bit of the pain & fatigue.
Who knows how long I’ll pay for the rare two day streak of activity.
Who knows when I’ll go back to sleeping more than 4 hours. But #MySpoons are now in the negative.
Who knows when I’ll go back to sleeping more than 4 hours. But #MySpoons are now in the negative.
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.
It's 4:30 am. Which means it's time for me not to be so exhausted that I can't get all the way in the bed and go to sleep.
On a regular night, I would tell you how frustrated I am with #myspoons and how I never knew being too fatigued to sleep was a thing.
But this is a Wakanda night (or morning. Whatever.) And this tired is so bursting with pregnant possibilities that.... I can even.
I wonder who even listens or cares when I post about #ChronicPain outside the #spoinie and disabled community.
I really do.
I really do.
Of course I know why I do it.
I'm trying to humanize people whose #ChronicDisease may not be apparent.
It's sad that humans don't naturally want to save an abstract life.
I'm trying to humanize people whose #ChronicDisease may not be apparent.
It's sad that humans don't naturally want to save an abstract life.
I know that hearing other people's story extends the life of #myspoons. So I share mine in hopes of doing the same for others.
And to be a part of #shareourpain & lots of other reasons.
And to be a part of #shareourpain & lots of other reasons.
The amount of added pain I get when I go downstairs & heat up dinner so I can take meds...
Meds I can't take on an empty stomach. That cause weight gain. #Fibro
Meds I can't take on an empty stomach. That cause weight gain. #Fibro
But if I wait, the timing of other meds will be off. So will my sleep. Weeks of cascading errors. #chronicpain
The agony is exhausting to the point that I'm not only no longer hungry, I'm nauseated.
By the time I recover my food will be cold as usual.
#SpoonieProblems
By the time I recover my food will be cold as usual.
#SpoonieProblems
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.
