Chronic Illness - Blog Posts

triggers for dysautonomia flare-ups ✿

these are some things I have noticed, either in myself or in other people, which tend to make symptoms of dysautonomia worse or even cause a flare.

environmental / external:

heat

cold

humidity

changes in barometric pressure

not meeting body's needs:

dehydration

hunger / low blood sugar

sleep deprivation

poor quality sleep

not taking breaks

other bodily-related stressors:

stress

exercise

being upright for too long

drugs / certain medications

raising arms above head

lifting heavy objects

squatting / bending over

strong emotions

standing up too fast

period / menstrual cycle

dietary:

caffeine

sugar

carbs

dairy

alcohol

fatty foods

artificial sweeteners

eating too much / too little

eating too quickly

what abled ppl think is a massive problem for disabled folks: 13 year old on the internet faking something

what is actually a massive problem for disabled folks: "well you don't LOOK disabled, are you sure you're not faking? I'm not giving you accommodations until you PROVE you're not faking. Please give me, a stranger, your medical info and explain your condition to me in detail so I know you're not faking and only then will I respect or take you seriously"

Weird kind of validation to having to call a physical therapy session early for the third time in a row. I got a cold a couple weeks ago so my heart rate is still being even stupider than usual. It's incredibly frustrating obviously, but it's also honestly nice to see some stats clearly representing a problem after my doctor refused to refer me to a cardiologist for more testing because he ran a preliminary test wrong 🙃

Also got told I should be walking less to recover unfortunately. I need to PACE and go for WALKS. Real stupid I think.

Sure, I might not be as healthy as some people, but can they do this? *stands up and passes out*

“Chronic illness warrior!”

Bro we were drafted

I'm thinking about chronic illness and wondering if others can relate. And I'm thinking this might sound strange to able bodied people, but it's something I wish I had more help with. My brain fog won't let me phrase it well, but I still want to write it down.

i had a long flare there, something mysterious, left me w brain fog and migraines and fatigue for a few weeks. I'm sitting up today clearheaded enough to do some work and I'm struck again by how it's scarier to be recovering than really ill sometimes. Being really ill is horrible but it's simple and straight forward. When you feel better you're hit fully with what you missed out on and how far behind you are and trying to prioritize which part of life to pick back up with the little strength you have. N it could just be a fluke - maybe I'll be back in bed tomorrow - so if I pick something to do that can't be finished and important TODAY, if I can't pick the one single thing that's worth doing this one good day that mightn't come again, I will feel like such a fool! I'm trying to be excited to feel better, and I am excited, but there's something so simple about the acute phase... "I just have to endure" is so simple. "What if I never get better" is a simple fear. When I'm properly sick I can't even torment myself with what I would do if I felt better, because I'm too tired. "oh, I could see my friends, I could work..." but I'm too tired to want that. "If I was well again"... I can't even picture it when I'm really sick, so my life doesn't look so bad because I can't compare it. When your strength comes back, your wants come back beyond the immediate and it's overwhelming. The fears are more complicated. I have the energy to compare again, and it really sinks in how much time I've lost to this. It's like the difference between being a child and being a grown up. I don't miss being a child, I don't want to go back to that ever, but my life felt simpler then and I could kid myself (pun intended) about so many things. It's not nice that recovery is such an anxious grieving time. Especially since I never know how long it will last, I feel like I don't have the time or energy to spare feeling frightened and sorry! I should be grateful to feel better, i should be excited and grab the opportunity. But it is a grieving time and I can't help it.

I think if providers laugh at us while we’re explaining our concerns we should be able to turn them into piñatas for precisely 40.3 seconds

me when my disabilities disable me:

having a flare up = forcing it on my blorbos of the month

zack revival after meteorfall au where he has chronic pain and cloud takes care of him on his hard days which is hard for zack because he's always been the one taking care of everyone around him. he was helping aerith with her flower wagons, he was trying to help angeal and sephiroth and genesis stay sane, hell he was trying to help cloud with his motion sickness!! and now his body revolts and makes him sore and exhausted for days on end.

cloud tries to convince him he really doesn't mind takin' care of him, that he loves him, but it's hard for him to take, y'know? it's hard to accept help when it feels like accepting defeat, and it's even harder to accept help when you don't exactly know what's goin' on.

ugh i'm so tired of this you guys

Sometimes it feels like i am already dead. Not part of anyones life anymore. Locked up in my flat. Just a liability for my parents who dont even like me. Like a ghost who is damned to haunt this room, but still has pain and wifi.

went to my general practitioner and suddenly got diagnosed with post covid and cfs. after he had not taken my symptoms seriously in the past. after years of medical gaslighting. i mean i still think its mecfs but thats probably as close as it gets. which is so much better than nothing. nevertheless i don't really seem to feel much about it even after i've recovered for over a week from this draining excursion. just endless exhaustion

I was outside today! For the first time in weeks except medical appointments. Went for a very short walk. It was great, but i'll probably have to pay for it and also i'm more sad now than i was before. The distance between where im at and where i would like to be is just too big.

Had an appointment with my neurologist today. Guess who went there with a stupid spark of hope to be taken seriosly this time and ended up crying ugly in the parking lot 🙃🙃

Does anyone else feel like they kind of have to train their able-bodied friends?

I know that sounds fucked up, but y'all know what I mean. Teaching them things like "slow down" and how to let me set the pace when we're walking, or how and when to offer help, or a HUGE pet peeve of mine: taking the ramp with me instead of splitting off to take the stairs.

I know they're not dogs, but y'all gotta admit that they do take some training.

Anyway,

You deserve family who try to understand your illness.

You deserve family who try to accommodate your illness.

You deserve family who respect your decisions regarding your illness.

You deserve family who nicely listen to you vent about your illness.

actually though medical trauma is often really glossed over in general discussions and depictions of disability. i always get the sense that fiction mis-attributes medical trauma to hating being disabled but like. even people who are perfectly fine with their disability can experience extensive and severe medical trauma. people who are diagnosed or undiagnosed. people who were born disabled or became disabled after birth. you have to submit yourself constantly to the whims of people with significant power over you! you're forced to consent to things that you might find invasive in order to access healthcare. if you're trying to access healthcare you have to expose your difficulties, sometimes pain, sometimes suffering up for someone else's dissection and perusal. and it feels like shit even when they don't dismiss you or berate you, or assault you, or gaslight you, or deny you healthcare. god help you if you're also trans or black or brown or can't speak the local language well or a number of other intersecting issues

Your friends and family with chronic pain aren't doing well.

Yes, even the ones that say they are.

Yes, especially the ones that are complaining and lashing out already.

Chances are high that however bad they will admit things are it's actually worse. By a lot.

We're conditioned to be "okay". If we're breaking down at non scheduled times we aren't coping well. I promise.

Your sibling/partner/bestie/parent who is breaking down without preamble on a Tuesday is suffering. Be kind. We're sorry.

How do people keep replying when friends ask how are you? I hate being so negative but often it's my reality like I couldn't do a lot of things today but I'm trying and nothing has changed!! I don't want to push them away by being the one who's always sick