*passes out*

your certified cardiac-arresting-sweetheart 🫀 storing my thoughts into little post boxes

[cross-my-heart-o2]

Well hello, there.

Welcome to my humble blog ⭐️

I post about many a thing, mainly my experiences with disability and chronic illness, neurodivergence, and a bit of my interests.

If you’d like to see some more neurodivergent and queerness content, check out my second blog, @ph03nix-by-th3-light-sw1tch.

🌻🌙🧀🚖☀️🎫🎺📒

Tags that i will tag things with:

#cardiac a restaurant: disability/chronic illness

#sunrays: hopeposting/i am happy about this

#wowee: interest i am so normal about

#conversing: answering asks

#talk show: something that does not fit into the above categories

[thecorvidforest]

be normal about people who wear diapers. be normal about people who need colostomy/catheter bags. be normal about people who need to wear pads or pad their mattress. be normal about incontinence. it’s not funny or weird or gross, it can happen to anyone of any age, and it’s frankly embarrassing that some of y’all can’t be normal about the aspects of disability that ick you out

[disposable-utensils]

the way audhd interacts with chronic illness. i can’t tell when i’m not doing okay until it’s really bad. so of course i use the energy and stamina i think i have but don’t and end up crashing at seemingly random times. love that.

[anxeious]

one thing about me is i’m gonna go lay down

[thevoidpeeringback]

Being in constant pain and flare ups truly changes you as person.

[tiredadventurer]

[terpsikeraunos]

ancient greek word of the day: κακοθερής (kakotherēs), unfitted to endure summer heat

[aphilologicalbatman-deactivated]

this literally means “bad at summer” pass it on

[zipstick]

Reblog if you, too, are bad at summer

[coffincutie3]

*sighs*

*slaps the reblog button*

[headspace-hotel]

i have this random theory that the amount of autism diagnosis seems to be rising partially because the sensory environment of the world is getting more hostile.

Things getting generally noisier, more screens/devices, more polyester in clothing. I'm not personally affected very much by lights, but maybe lights are different???

but like, kids generally spending more time in institutional settings (daycares/schools/extracurriculars) would also do it.

I was homeschooled K-12 (for disability reasons) and I really wonder sometimes how being in a "traditional" school environment would have affected me, like, developmentally. The number one thing that I absolutely Need to function and to Want To Be Alive is the ability to separate myself from other people and take downtime when I need it.

Situations where I have back-to-back activities all day are... I don't think I've ever been truly suicidal, but I've had times when the state of being alive felt so incredibly painful that I would cry for hours multiple days a week from the sheer crushing despair of having to live and be conscious through my life.

Sensory overload isn't the exact same thing as pain, but the "hurt" or suffering of pain is itself something that is not inherent to pain and only happens with pain above a certain threshold of tolerance and processing ability. So I think it's accurate to say: in the same way that an intolerable amount of pain hurts, sensory overload HURTS.

But every kid is expected to spend more than 40 hours a week in the same room as dozens or hundreds of other kids, and basically everyone thinks of this as the bare minimum for normal social development and literally cannot imagine anything else.

That is kind of an existentially dark thought to me

Discussions about how to make school (whether kindergarten, or college...) more accessible all seem to pathetically miss the point for me because fundamentally, the thing that would make "school" (being trapped in a room with stimuli that I have to process) accessible for me is for there to be FUCKING LESS OF IT

[aseriesofunfortunatetexts]

[violetbaude-deactivated20200229]

literally real life though

[fnord888]

Child abuse is a big problem, so it's important that we don't let children communicate with adults except their parents and other official authority figures. Everyone knows the best way to prevent child abuse is to keep children isolated and ensure all their communications are controlled.

[cross-my-heart-o2]

how to make swollen lymph nodes you’ve had for 8 days that have not gone down (and are spreading????) and low-grade fever that doesn’t go down with cold medicine and a bit of a sore throat also untouched by medicine and horrible fatigue and pain flare go away now

[cross-my-heart-o2]

lol this was PEM and my immune system getting weaker because of it and i had no idea

live laugh love myalgic encephalomyelitis

[cross-my-heart-o2]

if i wasn’t so disabled at this point in my life right now, i’d probably still be burning the candle at both ends, forcing myself to try and get ahead of the curve and hating myself for failing. i’d still be burning out constantly and having shutdowns and meltdowns often. i’d tell myself to do something, anything to make existence a little more bearable and then never do it because i didn’t think i deserved it. i’d still be hiding more than i needed to, and avoiding eggshells other people put down by stepping on the ones i put down myself.

i hate being disabled. i hate that i’ve lost so much of my life to my illnesses. i hate how uncertain my future is and how much independence i’ve lost along the way.

but if there’s anything wasting away and staring death in the eyes has taught me, it’s that forever trying desperately to fit in and be successful is no fun at all. it’s taught me that life is never as serious as it seems, and it’s even less permanent than everybody warns you it is. i don’t want to live a life i’m constantly trying to escape. i don’t want to live a life i’m trying to end.

becoming more and more disabled over the years taught me to choose joy. death taught me to choose life. my existence will never be the way i dreamed it to be, but it can be survivable, and it can even be really, really good. it takes practice and a whole lot of hard work, but i’m discovering my life is so much better when i’m living it for me.

[briarpatch-kids]

Oh man though, the kid playing on the work site today is making me anxious. He's like singing or something to enjoy the echo I think and it sounds almost EXACTLY like the hallucination I get when my air is bad and I hear people crying in the walls.

Like intellectually I know it's Son of Unrepentant Capitalist, but the soft angry animal in my brain that spent several years in chronic respiratory failure and had to listen to that says "aaaaa fuck off we JUST finally got to quit listening to that"

[briarpatch-kids]

Speaking of. If you have conditions that cause muscular weakness in your trunk (area between shoulders and hips) keep an eye out for steadily climbing anxiety levels and increased meltdowns that can't really be helped. The first sort of inkling I get that my air is bad is that I dream of swimming underwater and/or I have an increase in ptsd nightmares of getting strangled. Later on, I ended up having a lot of meltdowns in the morning but my brain would like... find a reason to explain the upset rather than being upset for a reason if that makes sense. I would solve the problem making me cry and then my crying would be over something else for HOURS.

When I got a cpap, then a bipap, it would solve the nightmares and as things got worse respiratory weakness wise, I would have these periods of interpersonal problems and meltdowns during the day that were solved by laying down for a "nap" on my cpap that actually made me perk back up too much to sleep. We didn't realize all of this was connected until I had already started hallucinating from co2 build up, hearing crying in the walls when there was none, I'm hoping this reaches someone BEFORE things get that bad.

If that all sounds familiar, try your best to get a sleep study, a pulmonary function test specifically for weakness not just asthma, and a 24 hour oxygen monitor study. There are more options than tracheotomies as well, there's non-invasive ventilation (what I use) and a type of mouthpiece that gives you a little pressured air boost only when you sip on it. I also found a smartwatch tracking my oxygen during sleep a huge help because it allowed me to bring a data set to back up the "well you see doctor, I dreamed about swimming in a drowned shopping mall last night and that means I'm not breathing enough in my sleep" with "and that made me check the data and it says my oxygen keeps dropping into the 70s when I reach deep sleep. Can we look into that just in case?" Day to day smartwatch data feels like a lot of noise so I avoid looking too closely at it, I personally don't find things like Visible helpful, but patterns are good. Doctors listen to patterns.

[we-will-all-be-stories]

Among the many amazing aspects of the Hadestown pro-shot, one of my favorites is the way Patrick Pages injury provides an excellent example of how disability does not have to be barrier to musical theatre. The way his injury was presented, especially in Hades and Persephone's dance, shows how with enough care, choreography and blocking can be modified for a disability and still present a beautiful story. In fact, the pro-shot shows how disability can not only be accommodated, but also utilized for characterization and storytelling.

[decadentqueentidalwave]

If a disabled person is waiting for an elevator, especially a wheelchair or bulky mobility aid user, you need to let them in, even if that means you have to take the next elevator.

Go watch the quest for the rainbow bagel, if it's still on YouTube. The guy has to wait as elevator after elevator after elevator is too full for him. Ultimately, he crawls down the stairs and has his companions carry his wheelchair for him. This is difficult, dangerous, and could break his chair- breaking his legs, essentially.

All because people who can walk were too selfish to let him on.

You can squeeze into a packed elevator. Bulky aid users can't. So get out, encourage others to get out, and let them in. You just have to say, "oh, you definitely can't go down the stairs, but the elevator is too full for you to squeeze in. I'll get out to make room for you and take the next one." It will pressure others to help.

This also applies to bathrooms, by the way. "Oh, you need the accessible stall. I can use any stall. Why don't you go ahead of me so that you can use it when it's available."

Standard disclaimer that non apparent disabilities exist and some might need the elevator/stall. If you have trouble with standing, I highly recommend getting a foldable seat or a cane seat. I sit on mine when I need to wait.

[cross-my-heart-o2]

my autism accommodations 🤝 my ME/CFS and seizure accommodations

[hazycola]

Being chronically ill is like having a curse where every 4 hours you get a random status effect, and most of which are debuffs.

Also you only have 1 action per day and long rests heal 2 hp. You're cooked.