punkwhenihavethespoons

[punkwhenihavethespoons]

I had a treadmill stress test done today. Next week I'm gonna get a heart rate monitor to wear for a week. Hopefully I'm getting closer to answers.

Also... during my first appointment with this new cardiologist my heart decided to beat at a normal rate while she was examining me and the doctor said, "just because it's not happening right now doesn't mean it doesn't happen" and I think that healed me a little bit.

[punkwhenihavethespoons]

guess who got really sick from the "gluten free" food I was provided???

I'm so nervous to be traveling out of state tomorrow for a conference. I haven't really traveled since I've become disabled and I've never traveled alone before. Wish me luck!

[punkwhenihavethespoons]

the traveling part went ok, but now that day one of the conference is over, I'm remembering how sick I get when I don't pace and I just do everything. trying to decide which session to replace with an hour or rest tomorrow. I just wanna be able to do it all and be a normal 20 year old.

I'm so nervous to be traveling out of state tomorrow for a conference. I haven't really traveled since I've become disabled and I've never traveled alone before. Wish me luck!

[punkwhenihavethespoons]

I'm so nervous to be traveling out of state tomorrow for a conference. I haven't really traveled since I've become disabled and I've never traveled alone before. Wish me luck!

[punkwhenihavethespoons]

10 days until my cardiologist appointment where I might actually get a diagnosis

[punkwhenihavethespoons]

I have another fucking head cold, just in time for finals week. I feel so crappy and I have to be on a plane in 8 days to go to a big-deal professional conference as my state's student representative. I guess this at least explains my flare up earlier in the week, but UGH I just want my body to function normally. I want to be able to do things. I have to go to the grocery store (I apparently don't have any cold meds) and to class and my workplace is having a party tonight that I was really looking forward to. And tomorrow I have a group presentation that's worth 10% of my grade. Fuck. At least being chronically ill means I'm pretty used to functioning when I don't feel well. I just don't wanna get anyone else sick.

[punkwhenihavethespoons]

I'm remembering even more of the things I said about myself to my professor. I'm kind of disgusted to think I said such dismissive and hurtful things about myself. I've still got a lot of self work to do I guess... AND I STILL FEEL LIKE SHIT MULTIPLE DAYS LATER!

my heartrate got super high in class today and I almost passed out, but I do remember telling my professor that I was really embarrassed and didn't want to be a burden for being sick. I knew I have a lot of internalized ableism, but I never knew it was that bad. fuck. anyways, my classmates were super sweet and kept checking in on me as I awkwardly sat on the floor.

[punkwhenihavethespoons]

my heartrate got super high in class today and I almost passed out, but I do remember telling my professor that I was really embarrassed and didn't want to be a burden for being sick. I knew I have a lot of internalized ableism, but I never knew it was that bad. fuck. anyways, my classmates were super sweet and kept checking in on me as I awkwardly sat on the floor.

[punkwhenihavethespoons]

i told my counselor that i age regress while i was little. she was super supportive, promising to learn more about age regression and apologizing for not putting it together sooner. i didn't even realize i had regressed around her before. anyways, this is just an appreciation post for my counselor.

[punkwhenihavethespoons]

getting my first real diagnosis the same week as the election is really fucking with my mind. like I can finally get some of the accommodations that I've been fighting for, but if I do I'll have a documented disability which sounds absolutely terrifying going into the next four years.

[punkwhenihavethespoons]

so... if I were to be writing a fantasy novel starring a chronically ill ruler and her girlfriend who are trying to uncover who is killing their friends while fixing their school system... would anyone be interested in reading it???

[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.

-------

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