punkwhenihavethespoons

[punkwhenihavethespoons]

anyone who knows me in real life knows how involved I am in advocacy for disability rights, for queer rights, for education, for the right to choose, for democracy, for equality... the list goes on.

I'm begging you to vote.

vote like your life is on the line, because for some of us, it is

[punkwhenihavethespoons]

sterile,

white room

crinkling paper

under bare ass.

no cartoon painted walls

like when i was younger

and mom was by my side;

there’s no reason to make this fun

to make it lighthearted.

it’s purely transactional:

i give you a list of symptoms

and you, mr. white coat,

tell me nothing’s wrong,

but something is

i feel in in my bones,

my stomach, my skull, my feet, my eyes;

in my heart.

so you lie through your teeth

that i’m healthy or it’s just anxiety...

fuck off.

nobody knows my body like i do.

[punkwhenihavethespoons]

the perfect attendance to chronically ill pipeline... like what is rest?

[punkwhenihavethespoons]

This is my first time posting a fic on here, but my bio does say writer, so here's a Criminal Minds fic about if Prentiss had POTS. Cross posted on AO3. It is a casefic, but nothing is graphic.

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The whole team was feeling the exhaustion that comes with getting only five hours of sleep in a hotel bed on an away case, but it was hitting Emily especially hard. They were in the police precinct building the profile of an unsub who had already killed at least four young women.

It was late October and JJ and Hotch were both worried about making it home in time to take Henry and Jack trick-or-treating at the end of the week, so everyone was putting in extra effort to make sure that would happen.

Emily pulled her blazer on at the desk, suddenly much more aware of how off her body was feeling. She was freezing, a little shaky, and really tired. She stood unsteadily, excused herself, and walked toward the bathroom, hoping that splashing some water on her face would wake her up a bit more. The further down the hallway she got, the less her legs seemed to work.

Each step felt like a marathon of effort and after a quick glance to make sure no one was around, she pressed a hand to the wall for support.

When she finally made it to the women’s room, she leaned against the counter, splashing water on her face, feeling like she could barely stand. She reached for her phone, not wanting to call JJ for help, but uncertain as to how she would get back to the conference room where they were set up without help.

“Fuck,” Emily swore, realizing her phone was still on the desk. With that realization, Emily started the long, seemingly impossible, journey back from the bathroom. She felt like she could barely walk, much less function.

When she eventually returned to the conference room, it was empty. Confused as to where her team had gone, she checked her phone hoping for an explanation. There was a message from JJ saying they were going to check out an address Garcia had found and that she should grab her FBI vest and meet them at the SUVs in the parking lot.

Emily struggled to text back that she felt really off and didn’t think she should go with. She asked JJ to come up with some excuse.

As the dizziness took over, she flipped to the camera app on her phone, terrified for what was about to happen, but certain she should document it. She propped the device up against a box of files on the desk, clicked record, and closed her eyes, hoping that would make the room stop moving around her. Everything slowed, even her thoughts.

I wonder if this is what passing out feels like…? Fuck, I’m going to pass out…

Emily blinked a few times before she could reach out and pause the video, slightly afraid to watch it back. The door beside her opened and closed and a worried JJ was by her side in an instant.

“Are you ok? What happened? I told Hotch you were sick and he told me I should stay back and check on you.”

“I… I think I passed out,” Emily whispered. “And I’m kinda scared right now.”

"Ok, shhh. It’s ok.” JJ wrapped her arms around Emily allowing her head to rest on her shoulder. “What do you mean you think you passed out?”

“I got it on video, I think. I just remember my legs not really working and feeling really cold. Then I thought that I was gonna pass out and…”

"How long were you out for?”

“I don’t know. I haven’t watched the video yet. It only just happened and…” Her thoughts still weren’t fully formed.

“That’s ok. Do you feel comfortable watching it or do you wanna give me your phone so I can see what happened.”

“I can handle it.” Emily unlocked her phone slowly and clicked play on the video that was up. She was only halfway in the frame, but it was still obvious when her eyes closed and her head tilted forward a few seconds later. About ten seconds later, the recording of Emily opened her eyes again looking around the room. Then the video ended.

“I know I closed my eyes, but I don’t remember leaning forward.”

“So, you were unconscious for at least a few seconds?”

“Yeah,” Emily sighed, tears starting to form, but she didn’t have the energy to cry.

“It was smart to record it. I’m gonna take you back to the hotel now. You look exhausted. I promise I’ll stay with you.” JJ paused to think, as she slowly helped Emily stand and lean against her. “How about I tell Hotch you have a fever? I know you don’t want him to know the truth, but I need him to know it’s serious enough you shouldn’t be in the field and that he’ll let me stay with you.”

[punkwhenihavethespoons]

I'm absolutely terrified thinking that I might have passed out for the first time ever today at work.

[punkwhenihavethespoons]

I'm so bad at taking care of myself when I have a cold, but maybe that's just cause POTS makes it impossible like...

I sneeze and my heart rate goes up

I make myself soup and my body decides the thought of soup is nauseating cause standing for the ten minutes it took to heat it was too much

I take a steamy shower so I can breathe through my nose and I feel like I'm gonna pass out

chronically ill people should not be able to get colds

[punkwhenihavethespoons]

Let's play 2 truths and a lie with how fucked up this week's been:

1. I had to explain to my dorm supervisor that I was not smoking, but that my heat pad had in fact caught on fire in the microwave

2. I went to campus health because I think I dislocated my hip (and I'm starting to suspect I'm hypermobile)

3. I caught a cold from my roommate right before midterms and I feel super shitty because my POTS symptoms were already flaring up

answer below

#2 is the lie. I called campus health and they told me that they weren't sure what they could do for me but I should definitely come in, which translates to we can't help you but we'll make you pay out of pocket to be told that in person. fuck that

[punkwhenihavethespoons]

apparently it's Dysautonomia Awareness Month and right now I am very aware of my dysautonomia

[punkwhenihavethespoons]

migraine: 0/10 would never recommend

...and nothing I've tried is helping

[punkwhenihavethespoons]

I'm an education major and I just found out that because my university won't give me accommodations without an official diagnosis (which I'm fighting to get), I won't be able to have any accommodations for my practicum placement (where I'll be in the classroom observing and teaching). I'm literally crying rn.

[punkwhenihavethespoons]

I was just walking back to my university dorm and there was this little boy who was maybe like two or three sitting outside with his mom. As I walked past, I heard him say "What's she have in her hand?" I turned around, smiled at them, and answered him, "This is my cane. It helps me walk." He then waved to me and I waved back! I love how kids don't judge, they're just so curious and sweet.

[punkwhenihavethespoons]

I just gave a lecture at my university to a bunch of future teachers about invisible disabilities in the classroom and how to best support disabled students! I was so nervous, but it went really well. I'm so fucking tired now though

[punkwhenihavethespoons]

for me, the worst part about the toxic yoga-will-cure-everything rhetoric is that my mom's a yoga therapist; she truly believes that yoga will fix my chronic health issues.

[punkwhenihavethespoons]

When I'm Sick

When all 5’2” of me hurts

But I did nothing wrong

When I feel feverish

But my temperature’s 98.2°

When the doctor says it’s in my head

But I’ve been sick for half my life

When I need to sleep

But I’m in too much pain

When I want to scream

But all I can do is cry

When I’m anxious and sick

But what’s first: the chicken or the egg

When water tastes like poison

But it’ll be my cure

When lunchtime comes

But I can’t imagine eating

When the dishes pile up

But I can’t get off the couch

When no one understands

So I hide away

[punkwhenihavethespoons]

I ended up telling her the basics last night. She said that her boyfriend has asked about my cane, but that she hadn't even noticed it. Which is kinda weird because I've never met her boyfriend, but he must have seen me leaving for class or something. Either way, she responded better than I expected her to, so yay!

I just googled 'how to tell your roommate you have POTS' and it gave me a bunch of reddit articles about people being mad that their roommates were taking cooking supplies.

As humorous as that was, how do I tell her??? How do I explain my chronic illness to one of the girls I have to live with for a year (the other girl is my good friend and is already super supportive even if she doesn't totally get it) in a way that won't scare her off? There's no instruction manual for this.

[punkwhenihavethespoons]

I just googled 'how to tell your roommate you have POTS' and it gave me a bunch of reddit articles about people being mad that their roommates were taking cooking supplies.

As humorous as that was, how do I tell her??? How do I explain my chronic illness to one of the girls I have to live with for a year (the other girl is my good friend and is already super supportive even if she doesn't totally get it) in a way that won't scare her off? There's no instruction manual for this.