#on suffering with a chronic illness

[akindplace]

My illness has no cure. It probably won’t have for the duration of my life. It won’t “get better” because the scientific community is still trying to understand it and there is not enough academic research on it, unfortunately. Many doctors haven’t heard of it, and they don’t always know how to help, how to treat it. Everything is always very experimental and there isn’t a single solution for the symptoms of my illness since every person suffering from it has very different experiences.

Yes, there is no cure, and they won’t probably find one soon. But there is something else that can be solved, there is a resolution to be found: it’s acceptance by society. Accommodation. That often involves people having to be educated, because often the worst judgments come from a place of ignorance. But I believe society can know better. I believe in advocating for the rights of disabled people. The quality of life of a disabled person like me can greatly improve when others understand that my body might work differently than theirs, that my limitations don’t always allow me to be the most productive all the time, that I am dealing with chronic pain, and chronic health problems, but I am still a person, just as anyone else.

As social creatures, we need each other. And it’s okay that different people have different needs. And needing more or less support should not define your worth or how integrated you should be into society.

[starfishinthedistance]

Friendly reminder that if you support reproductive rights and bodily autonomy but say that disabled people shouldn't have children because they'll pass down their genes which is "cruel" or "abusive", you do not support reproductive rights and bodily autonomy. Reproductive rights do not only concern abortion for cis white abled women.

[bardic-inspo]

*takes your face and holds it tenderly*

You were not made just to suffer. You are more. You are so much more than your hardest moments. 💜

[youngchronicpain]

Hey, you! Try that mobility aid you've been thinking about. If it helps you, then you need it. Easy as that! Most people start using mobility aids on their own, without a doctor recommendation. And that's perfectly normal and okay! If you're worried about using it correctly, there are many guides to get you started. I know it can be scary. But mobility aids can open up your world in so many ways. If it helps, then you need it!

[ohgreat-moretapes]

Tim I noticed a lot of indigenous patches on your jacket, are you Native?

Idk what my dad was 'cause I never knew him, but yeah my mom is (or... Was.. I guess..) Muscogee, the tribe native to the part of Alabama I'm in.

If I remember correctly she came to Alabama from Oklahoma (where a lot of Natives were displaced to in the 1800s) to "get back to her roots."

But yknow, I was separated from her in childhood (which tbh is upsettingly common for Native families) and I was raised in a very white very Catholic asylum so I'm not as connected to the culture as I'd like to be.

-Tim

[foldingfittedsheets]

Me, suffering the agonies: Why do I feel so shitty?

My betrothed, helping me carefully compile symptoms and timeline: Hm. You have low blood pressure, let’s get some electrolytes in you.

Me: …huh.

My betrothed: Yes?

Me: Do you think this is because of my blood draw on Friday?

My betrothed: Well now I do.

Me: Yeah… usually for blood draws I’ll come home and drink some electrolytes but because I didn’t feel bad after the last few I just. Didn’t this time?

My betrothed, lovingly and tenderly kissing my face: You’re so stupid sometimes when you’re on your own. You’re like a little dodo bird. You’re like, ‘I’ll just do this same bad things, surely the same thing won’t happen again!’

[absentlyabbie]

don't be afraid of buying things that make your life easier. don't talk yourself out of it, beat yourself up for being "lazy", or shame yourself for not being able to do things the "right" way so you don't deserve to try it a different way.

if there's a thing out there that can make something faster, more bearable, less painful, more tolerable, anything like that at all, and you can afford it? you have the right, you deserve it, and you should do it.

i've stuck for the last several years with exclusively those detachable sprayer showerheads, because i need to be able to sit down in the bath and it makes the entire operation easier, so i'm less likely to risk a concussion or pass out or wobble and slip.

for the last few years, i've been using one with a little powerwash spray setting and i use it before and after every shower and it keeps my tub and shower cleaner so much longer, which is great because i hate cleaning the bath and can put it off for months, and scrubbing kills my shoulders.

sometimes, whether it's the executive dysfunction, or the depression, or knowing that i become entirely detached from the concept of time when in the shower, if i can't bring myself to get in the damn thing and do a full-blown shower, and i know i'd just be uncomfortable and not clean and still keep putting it off (because i can easily lose well over an hour once in there), i will kneel on my (cushy, quick-dry, memory foam) bathroom mat beside the tub and lean over it to wash my hair and face and maybe soap up to my shoulders. then later when it feels like a way more manageable and shorter task i can do a quick scrub and rinse.

i've bought cbd for when my joint pain makes sleeping otherwise impossible (even though it's expensive) and a work desk that has expandable legs to be a bed desk if i ever need to work sick (i'm lucky to be remote since my job change).

i've bought the screw-top, 40oz, insulated mugs and extra long plastic straws (do not @ me) and the pop-bottom giant cube ice trays all because every one of those helps ensure i drink more water every day (and so does the faucet-mounted water filter).

i buy specific individual snacks that require little to no prep so even when the execution of making a sandwich is Too Damn Much, i can still make myself do some calorie intake.

i talked myself into a cushioned mattress topper to relieve my spine and because it's way cheaper than a new mattress. i bought blackout curtains for our old apartment because the outdoor lights were insanely bright at all hours and made sleep even more elusive.

i've purchased slip on-only shoes or no-tie laces because i hate tying shoelace knots, my hands are less dexterous than ever (and hurt), and because i struggle with time management and it's one small thing to shave off just a little more time so i'm a little less late.

i didn't buy all of these things all at once, definitely. i am, sadly, made of meat and not money.

but i started budgeting, slowly, more and more of whatever amount of disposable income i had after bills towards "thing to make life suck less and not be so hard" and i can't regret it in the least.

i deserve not only small comforts and joys, but also less pain and difficulty, and ways to make challenging parts of life a little more within my reach with not quite as much effort.

so do you.

[calmmyfears]

it is so fucking hard taking care of yourself while all you're longing for is for the pain to end. no i do not want to make dinner again, i want to live a pain free life thanks x

[minty-bunni]

Danny developing any chronic condition that leads to periods of joint stiffness (and other things, but the major part is stiffness) has a ton of angst potential in regards to his status as one of the living.

Imagine being something in between life and death and then your joints get all stiff for the first time. I'd imagine someone in that situation who is unsure of their humanity *might* just jump to thinking it was rigor mortis starting to kick in.......

[majaurukalo]

I’m feeling pretty sicker this summer and am really struggling to stand the heat. Is it because of the rising temperatures? Or am I getting worse? What is it?

I don’t even want to imagine how it’s going to be if every summer is going to be hotter than the previous ones.

[ineffectualdemon]

Word of advice

If you take a medication like methotrexate which upsets your digestion and you're also lactose intolerant DO NOT eat cheese on the same day you take your medication

[threezoz]

I've been struggling so hard for so long, i forgot what it was like to be quick-witted and feel smart.

i was gonna give up and just Get A Degree™️ but today, i read @teaboot post about filling yourself with love? I'm having different thoughts.

i want a degree that reflects my level of effort, how much pain i've had to work with to get here, what it's cost me.

no, it wasn't easy but i want people to give me a reason to punch them.

[th3wizardoz]

I’ve realized that people think I’m being hyperbolic when I talk about my pain because I am still functional despite it.

It’s not that I’m exaggerating or have a high pain tolerance, I’ve just never had the option not to function. Like ever.

[mpekamitzii]

Trying to get back to drawing ft. Orange

[fizziepopangel]

Chronically ill Vaggie headcannons? I feel like she suffers from back pain and flare ups from losing her wings

I love this idea, lowkey jealous that I didn't see that oppertunity, but so glad you brought it up! I hope you enjoy these chronically Ill Vaggie headcanons!

Chronically Ill Vaggie

Vaggie was a happy, healthy angel. She had experienced the occasional wing cramp or sprain, and the occasional strain from overuse, but nothing compared the the pain of having her wings ripped off her body…. At least that was what she thought after it happened. But what was worse in her eyes was the pain that came afterwards.

Healing the wounds wasn’t all that hard, especially with Charlie at her side nursing her back to health…. But the pain never truly went away.

Most days it was manageable; just an ache where the muscles had been torn, a few quick jabs of pain where the joints and bones had been snapped, but nothing a bit of stretching and an over the counter pain medications wouldn’t help, but some days the pain was nearly unbearable, bringing the former exorcist to tears.

She tries to limit the amount of lifting and bending she does (though carrying her girlfriend to bed is never off the table and she will do it even if the action brings her to tears)

Vaggie actually throws out her back more often than Husk, causing the old sinner to poke fun at her for “acting old” when her back goes out or she complains about pain.

So much slouching

While most people experience mostly lower back pain or mostly upper back pain, Vaggie has found that her pain shoots both up and down, and after Charlie helped her get a doctor that listened to her concerns, she found that there were several muscle groups and joints that were irreparably damaged, causing the pain to be something she would likely experience the eternity she lived in hell. Vaggie cried  when she realized that this was something she’d always experience.

Her pain does affect her combat style sometimes, but she does her best not to let it because she refuses to look weak in front of her friends and family, or her opponents. She definitely has pretty bad flare ups after any sparring or fights she's in though.

Different types of pain sensations in different areas of her back. Her lower back mainly aches while her mid and upper back tend to have sharper pain that Vaggie has compared to a hot knife being stabbed between the vertebrae in her spine.

Heating pads. Everywhere. Charlie made sure they are always on hand for her.

Her back pain causes pain in her hips and neck from the muscles overcompensating for the muscles and joints being unable to perform the way they normally would.

After noticing that her pain made it a bit harder for Vaggie to climb the stairs some days, Charlie began trying to make the hotel more accessible to her, adding an elevator and even making the room they shared a bit for disability friendly.’

Since the pain can make it hard to sleep some days, Vaggie takes naps sometimes during the day, sleeping with a body pillow that she sort of straddles to help relieve some of the pressure on her lower back.

So much comfort and support from her girlfriend (and Lucifer by association). Lucifer would gift her a duck pillow during one of her flare ups as a way to cheer her up.

Charlie giving massages unprompted on the days she notices her girlfriend flaring up, kissing along her spine as she does.

So much back cracking/popping. And yes,it sounds horrifying sometimes.

She gets the egg bois and Niffty to walk on her back sometimes. She’s asked Charlie, but the princess is terrified of breaking her.

Chiropractic and physical therapy weekly.

Hot showers and baths with epsom salts, though Vaggie doesn’t complain much since she can often get her girlfriend to join her.

Though she won’t tell anyone (besides Husk since everyone likes to bitch to the bartender), Vaggie often feels ashamed of being in pain since the constant pain makes her feel weak because she has to listen to her body’s limitations.

Even after getting her wings back, her back pain remained, she now has to adapt to the back pain being worsened every so often when she flies too much.

[honeyed-lemonade]

dysautonomia tips online say "cut out high fat dairy" and "limit carb intake" and """examine your reaction to gluten"""". have you considered I like these things.