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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 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.
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.
At all. I just wish I knew how to handle these things better.
I thought I would’ve had more practice by now.
Because I have explained this. 100s of times since 1993.
If I know that every week I have an appointment? I can rearrange my entire week to support that activity with enough advance notice.
Because it’s part of my routine, I can build the prep into the routine.
If I know that every week I have an appointment? I can rearrange my entire week to support that activity with enough advance notice.
Because it’s part of my routine, I can build the prep into the routine.
People will say
- but it’s just a cup of coffee
- it’s just a video presentation
- it’s just a GFM page
- it’s just an article due tomorrow
- it’s just paperwork
I don’t have “it’s just” in my life.
Just good enough at masking to make you think so? I guess?
- but it’s just a cup of coffee
- it’s just a video presentation
- it’s just a GFM page
- it’s just an article due tomorrow
- it’s just paperwork
I don’t have “it’s just” in my life.
Just good enough at masking to make you think so? I guess?
Some days I might be able to write 6 tweets & I’m maxed out for activity.
... for the day.
Every few months I could also have a day where I write an 1800 word essay in an hour.
& even if I wake up WITH energy (rare)
... I need it to complete all the tasks I had to put off.
... for the day.
Every few months I could also have a day where I write an 1800 word essay in an hour.
& even if I wake up WITH energy (rare)
... I need it to complete all the tasks I had to put off.
People who haven’t had #fatigue don’t understand that it’s not just *that activity* for us.
It’s that plus ALL the things we need to do to prepare for it.
It’s that plus ALL the things we need to do to prepare for it.
And on top of that, things that used to cost very little of a seemingly unlimited
— or at least reliably replenishable —
store of energy also costs us more in expenditure.
Things I didn’t even think to quantify before are Herculean tasks now.
— or at least reliably replenishable —
store of energy also costs us more in expenditure.
Things I didn’t even think to quantify before are Herculean tasks now.
For you a tweet and a blog post might be comparable levels of energy to undertake.
For me a thread of tweets is MILES away, energy wise, from writing a blog post.
With #ExecutiveDysfunction it’s easier for me to collect a few short thoughts in a tweet.
For me a thread of tweets is MILES away, energy wise, from writing a blog post.
With #ExecutiveDysfunction it’s easier for me to collect a few short thoughts in a tweet.
No formatting.
No fields to make sure you filled out.
Typos aren’t a death sentence.
I can pretty much express my stream of consciousness.
Voice to text works with this site on my phone.
Art is not required.
For a blog post? A crowdfunding campaign?
None of those are true.
No fields to make sure you filled out.
Typos aren’t a death sentence.
I can pretty much express my stream of consciousness.
Voice to text works with this site on my phone.
Art is not required.
For a blog post? A crowdfunding campaign?
None of those are true.
So you might think you’re asking a #spoonie for a few minutes of their time, to go out & have coffee.
To perform in the world like you can, in a way you take for granted if your abled.
And when I was like you? I’d just grab my purse, jacket & car keys.
Just get up & go.
To perform in the world like you can, in a way you take for granted if your abled.
And when I was like you? I’d just grab my purse, jacket & car keys.
Just get up & go.
Now?
If you expect me to be somewhere in an hour with no notice?
Prepare to be disappointed.
Because I can only do a certain number of things for the rest of the day.
Some aren’t optional.
If you expect me to be somewhere in an hour with no notice?
Prepare to be disappointed.
Because I can only do a certain number of things for the rest of the day.
Some aren’t optional.
If I haven’t had rest I need at least an hour of it in advance
—> per hour we plan to be out <—
Not sitting up.
In my bed, heating pad on, limbs outstretched.
So I should have started getting ready for anything happening in an hour last night.
OrI can’t go. That simple.
—> per hour we plan to be out <—
Not sitting up.
In my bed, heating pad on, limbs outstretched.
So I should have started getting ready for anything happening in an hour last night.
OrI can’t go. That simple.
Then there’s the fact that I gotta prep differently because I’m disabled.
Y’all built a world where people like me are not free to wing it.
Y’all built a world where people like me are not free to wing it.
You gotta prep. Not optional.
And during it you may need to
- scope the place out to see if it accommodates my disability
- find out what fam is available to meet you at the hospital should things go south
PLUS
And during it you may need to
- scope the place out to see if it accommodates my disability
- find out what fam is available to meet you at the hospital should things go south
PLUS
- ask for the money from fam. If there is any. Cuz I’m likely broke after bills.
- do a full body & mind systems check
- make sure you have a plan to take meds you can’t miss taking
- AND remember to do it.
- do a full body & mind systems check
- make sure you have a plan to take meds you can’t miss taking
- AND remember to do it.
You tired yet?
Because SURPRISE this lady was already more fatigued than most people
and in an enormous amount of #ChronicPain before this.
And I may have to do double that work or half. Who knows?
Because SURPRISE this lady was already more fatigued than most people
and in an enormous amount of #ChronicPain before this.
And I may have to do double that work or half. Who knows?
How do you say all that to people in a short declarative statement that doesn’t invite the best of your friends to ask
A BARRAGE
of questions afterwards?
Without making the whole thing about me in a super-exhausting way?
A BARRAGE
of questions afterwards?
Without making the whole thing about me in a super-exhausting way?
If you look at the first tweet in this thread you’ll see that most people
people specifically following me because of these weird convos I have in my brain with myself?
Their interest did not survive the amount of explanation.
people specifically following me because of these weird convos I have in my brain with myself?
Their interest did not survive the amount of explanation.
(Of course there’s factors like who’s online now, whether they see my tweets, etc. the point is — that’s among people who are facing my same struggle. Or at least trying to learn about people like me.)
Someone whose name I always forget compares the unpredictability of the #chronic illness experience to torture.
It’s the most accurate description, sadly, that I’ve ever heard.
It’s the most accurate description, sadly, that I’ve ever heard.
They explained it by saying torture isn’t just about inflicting pain.
It’s not knowing when the pain will come or if the same resolution/workaround you did the last time will make it better or worse.
It’s not knowing when the pain will come or if the same resolution/workaround you did the last time will make it better or worse.
And it can be torture.
I’m lucky that I can ask my loved ones for patience.
But man that conversation vexes me to no end.
I’m lucky that I can ask my loved ones for patience.
But man that conversation vexes me to no end.
Sometimes you just don’t want to spoil the vibe!
Or maybe things are worse than normal and you’re flaring.
But will I be tomorrow? Fuck if I know that.
Or maybe things are worse than normal and you’re flaring.
But will I be tomorrow? Fuck if I know that.
Anyway this ramble has already gone on forever. Anyone else feel like this?
Like you’re weary of having to explain?
Almost enough not to let new people in your life at times?
Like you’re weary of having to explain?
Almost enough not to let new people in your life at times?
And it can be torture.
I’m lucky that I can ask my loved ones for patience.
But man that conversation vexes me to no end.
I’m lucky that I can ask my loved ones for patience.
But man that conversation vexes me to no end.
Sometimes you just don’t want to spoil the vibe!
Or maybe things are worse than normal and you’re flaring.
But will I be tomorrow? Fuck if I know that.
Or maybe things are worse than normal and you’re flaring.
But will I be tomorrow? Fuck if I know that.
Anyway this ramble has already gone on forever. Anyone else feel like this?
Like you’re weary of having to explain?
Almost enough not to let new people in your life at times?
Like you’re weary of having to explain?
Almost enough not to let new people in your life at times?
Speaking of tips. If you learned something, I can always use a dollar or ten.
For once, no immediate need & bills are paid.
But if I have to survive corona lockdown with what? We’re in trouble.
http://Ko-fi.com/TinuWrites
http://Venmo.com/TinuWrites
http://PayPal.me/TinuWrites
For once, no immediate need & bills are paid.
But if I have to survive corona lockdown with what? We’re in trouble.
http://Ko-fi.com/TinuWrites
http://Venmo.com/TinuWrites
http://PayPal.me/TinuWrites
@threadreaderapp unroll this future blog post.
