#chronic illness fuckery

[swordsonnet]

the most annoying thing about me/cfs is that it's more like 10 different illnesses in a trenchcoat. i'll wake up with a new symptom and be like "oh okay, guess that's what we're doing today"

[insufficient-earth-skills]

For that last reblog I also forgot to add that bc/ o reasons my 4 is other people's 5/my level 5 looks like a 4. My output will always be better than ppl expect of someone with that level of fatigue. And that is just something that I never realized I was dealing with.

Brought to you by chats with my sister who had/still has (partly) debilitating long covid for over a year and the conclusion that we should embrace mediocrity more.

[clatterbane]

I can't help but be impressed again at the difference since I finally got on insulin and my cells can actually get/use energy.

Tonight, I am pretty worn out and probably should have already gone to bed. But, even after pushing through some post-viral fatigue on too little sleep and food, and probably getting more exercise this evening than the whole last week put together?

I am mostly just "normal" tired, and some muscles aren't too happy at how I've been treating them. But, even through the post-COVID blahs? It's nothing compared what a freaking grocery run would have done a few years ago.

I fully expect to be a little sore tomorrow, and probably sleep late. (At least as much for mental recuperation as anything else.) But, I do not expect to be absurd level wiped out for several days, with new things wanting to go haywire because fuck you that's why.

Hard to explain the subjective difference without feeling it for yourself. But, it is definitely there and it keeps kinda surprising me whenever I do things that I still half-expect to fuck me up much worse. After too long of the other thing, it is still refreshing every time.

[chronicillnesscaneffoffplease]

“The labs found something wrong!” 😊😌

“The labs found something wrong!” 😥😔

The two moods when labs actually come back with stuff out of range and clearly not right™️.

[unhingedraccoon]

I hate when I do hw for like 20 mins and then I get a horrible headache like please hEDS just let me pass college I’m begging

[goddammitstacey]

Me: My previous toxic workplaces definitely didn’t leave me with any lasting trauma

Also me: *hyperventilates any time I have to call in sick*

[jaywalkers-against-germination]

tragic that i can't just put "unidentifiable human suit fuckery" on my medical forms. i feel like it encapsulates the appropriate amount of information

[rawliverandgoronspice]

one of the wonderful things about being freelance are the clients who send you a huge email friday evening with tons of documentation to read and review for the 6am monday meeting 👍

[void-tiger]

There is just this rage that comes with realizing your body is just completely fucked while still outwardly looking Fine.

And then garnering the judgement of family who have convinced themselves you’re not trying hard enough.

And still waiting for a finished diagnosis to try petitioning for life-long physical therapy, pain management (that are NOT opioids when you can’t take nsaids, and you’re deemed too young for steroid injections especially as it is never brought up as an option), and ssi disability. Because what else are you gonna do. Especially when you’ll always be a burden. Capitalistic life isn’t designed to allow you to rest so you can still do Something within your limitations and not get injured, anyway. Or have energy left for yourself.

(No one is really clever enough to help, either. Is it even worth the risk to try contacting rehabilitation services when you need to stay on medicaid for a eventually-debilitating auto immune disease that has to have very expensive injections twice a month, all the while it’s the hypermobility that makes even being a student or hobbies or chores so iffy?)

And then trying to befriend some people. But there’s this wall there. They radiate concern. Sometimes affection. But I don’t want pity. (I don’t know how to accept actual sympathy to my face by their vibes and tone and body language, anyway.) I just want secure friendships. I just want—for once in my adult life, or my life period if including neurodivergence’s and the resulting cptsd from not even remotely accepting environments—to not be my Problems. Someone else’s Problem.

I just want to be human. I want to have fun and feel capable and not blunderingly or intentionally reminded that I’m not.

(Am I even worth being someone not pitied? Not judged? Will I ever be fun?)

[paradoxesofgalaxies]

Do I have a slight fever because I got sick at the wedding or just because my body is a piece of shit and sometimes spikes fevers just funsies?

Stay tuned to find out

[swordsonnet]

note to body: one chronic illness is more than enough. we don't need more

[potionofinstantdamage]

you me

🤝

stuck in the hospital solidarity

gods fucking bless lets go my dude. i should probably also clarify for the masses that i am not here for life threatening reasons

[chronicillnesscaneffoffplease]

I graduated from my bachelor degrees yesterday. It still feels like a bit of a dream.

I’ve got two fancy pieces of paper now, and a fancy hat, and a feeling of pride that I made it through uni, let alone while my health crashed and burned around me, through multiple investigative surgeries and procedures, and so many diagnoses, in the midst of a global pandemic. I, and many of my friends, and my peers, we made it.

But the day took a huge toll on me. Wake up early to get ready. Ready includes the waist-high compression stockings I sometimes don’t have the strength to put on. Struggle with them for a solid while. A beautiful dress, with pockets!! Wear sensible shoes, with a low heel and additional arch support. Worry about tripping or fainting while walking the stage for a good long while. Instead, trip and fall on the way to registration, banging my knee onto carpet covered concrete. Ouch. Sit in the shade, with sunnies on, hoping I don’t develop a migraine while waiting for doors to open for us to be seated in the hall. Walk the stage without any issues, but lean heavily on the bannister as I cautiously take the steps off the stage. Let loose and allow myself a glass of champagne to celebrate after. Roll my ankle again, walking to a photo location after the ceremony. Start to feel exhausted, but know we still have dinner plans. Majorly enjoy dinner, almost forgetting that my stomach will hate me for it later. Still had to take my meds, still had to pay attention to most of my pain and migraine mitigation strategies on this day that’s so special, but cannot be just about me, because it is also about my managing my illnesses and how they are never going away.

So here I am at home, resting, nursing a twice sprained ankle, a sore knee, a gastro intestinal tract that can’t deal with the excitement and nerves and lovely celebration dinner, a flu-like feeling and thermoregulation issues and malaise (so a fatigue flare up basically). But it was worth it.

I did it. And I’m going to keep doing it at my own pace as long as I can. I’ve been accepted for an honours year (or 2- part time) and I hope to do more after that. Disabled and chronically ill people belong in academia. Our voices are important.

[pursuitoftruth]

i need to take a minute here and vent. or scream into the void? yeah, i’ll go with scream into the void. 

and i realize how selfish and hypocritical this is gonna sound. 

my mom has several debilitating chronic illnesses. she’s had nearly 20 surgeries. she lives in chronic pain. 

sometimes she handles all of this with grace. 

sometimes she doesn’t. she screams in pain. she throws things. she expects me to know what she needs without ever verbalizing it. she maintains that her suffering is greatest, and therefore, the only one in our family who’s suffering is valid. no one else is allowed to complain about their own crucibles. (suffering shouldn’t be a competition. she’s never learned that lesson.)

i’ve been caregiving for her as long as i can remember. i’d give her migraine treatment injections when i was 3 or 4 years old.

due to a myriad of misfortunes (being a millennial and graduating during the recession chief among them), i’m 32 years old and still live at home. i’m readying myself - cost be damned - to move to a favorite city and find a job i can tolerate and finally begin my life. 

but.

i’m an only child. 

and my dad is 13 years older than my mom. 

i’m frantic and angry and scared and bitter over the thought of needing to return to this caretaker role in the next 5-10 years because of his age and her conditions. 

the underlying, unstated but obvious assumption is that it’s my familial duty to care for her. dad doesn’t think this so much.

i’m not built to be a caretaker. i don’t have the temperament. 

i also want my own life. 

and i’m starting to wonder if that will ever happen. if that’s in the cards. if that’s an unattainable dream thanks to american healthcare and societal structures and a ton of other failings. 

i also have several chronic illnesses. (i’m currently neglecting my month-long asthma flare to try and help her with an acute issue.)

i understand to a degree what she’s going through. 

i fear never being loved because of my conditions.

i fear never finding a partner that will stay and never view me as weak. 

i fear being a burden.

so i guess what i’m saying is - on the one hand i understand what she’s going through and don’t fault her. hell, i may need caretaking later in my life. but on the other hand, i don’t know how i can keep doing this.

[annieisyourfavourite]

"How blessed are some people, whose lives have no fears, no dreads; to whom sleep is a blessing that comes nightly, and brings nothing but sweet dreams."

Lucy Westerna, Dracula by Bram Stoker

[olskuvallanpoe]

no I don’t have sex hair. it’s just that if I don’t spend at least 80% of every day lying down in bed, I mentally and physically stop being able to communicate