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#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! 😊 So, my partner and I have been together for 7 years. He’s at a job right now where he has insurance, but it’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 people—one of whom is very sick—especially if he loses this job.
#letusmarry
Read 10 tweets
Somehow this cat annoying me for food has reminded me of when I first dealt with ableism. That ableism was a part of why I tried to work from home.
I was told that I was lazy. That I wasn't contributing to the world (aka capitalism), and how that made me a terrible person. The person who said this, I think they have the same opinion.
They think that everyone, no matter what life's challenges, should not be lazy and contribute to whatever in order to be a good person. Years ago, that was very painful. I knew how hard I'd been trying to be "normal".
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
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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.
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:

✅ 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.
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

🎥 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 wouldn’t have to do too much. BUT...1/? #spoonie
As much as our communities have become more “accessible”, they really haven’t. Let’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 ain’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 that’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.
We’ll be doing so alongside a story. So you’ll see why this is on my mind.
In my former life, I was a lucky spoonie. I ran two businesses. I don’t like to talk about how much money I made.

Let’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! ✏ 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
I have to be up late for work to measure certain things in real time. And I realize I haven't talked about #myspoons lately. So here we go.
Today I'm forced again to consider how the world is not built for me. I'm constantly trying to fit it. & it feels like failure.
I say "feels like" of course, because it is Not my failure. It's neglect so consistent deep that we're fooled into thinking it's normal to discount a portion of our society.
Read 31 tweets
Lots of new people, hi! A thing I do every few nights is talk about #myspoons - in #spoonie parlance it’s shorthand referencing energy.
A #spoonie is a person w an invisible #disability. You might not realize it but we’re everywhere. If you're hiding illness you might be one.
The term comes from The Spoon Theory written by Christine Miserandino (@bydls)

🎥
Read 18 tweets
Was trying to wait until prime time was over. Watch tv. Try to be well in light of #worldmentalheathday -but I can’t hold this. Thread time.
I’ll start with a trigger warning. Which I never do cuz in my day if it weren’t for being triggered, I would not have survived.
The trigger/content warning is for talking about sexual abuse & the trauma that follows. We might get into suicidal thoughts, maybe not.
Read 47 tweets
Tonight #myspoins are educational. I used to think in terms of how #disability affects my access. Now it's a trait to me like brown eyes.
I used to thinking embracing being a #spoonie meant accepting that I could never be my best self. Now I know it just means changing paths.
#MySpoons will mean only a limit to the amount of BS to be allowed in my life, not a limit to what life can be.
Read 15 tweets
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