#i do still have other chronic illnesses which are debilitating in their own ways

[bulldagger-bait]

LONG ramble ahead. Feel free to skip. (Also this stuff is probably a bit too personal but i dont really care tumblr is my diary and i just have to get these thoughts out)

I had my first almost completely pain free day today and... It was fucking magical. Like, I still had pain in all of the niggling areas i always do: muscle tension, joint pain.

But my nerve pain. My nerve pain! For a good while it just wasnt there. And because the pain wasnt there, the FND couldnt kick up a fuss. I felt strong. I could stand. I wasnt hurting.

When i woke up after my surgery nearly a decade ago, i was in the worst pain of my life. I was writhing and screaming and begging to die. 10 out of 10 out of 10. And over the course of my hospital stay it diminished. Went from 10 to 9 to 8. And then 8 is where it stayed. It became my new normal.

I forced my way through the first year of recovery waiting for it to get better... But it never did.

I tried to push through and not let anything hold me back. I dont know how many times i sobbed to myself quietly about how unbearable it was. I tried to take my life twice, and the pain was a significant reason why.

Eventually i got on meds that knocked it down to a 7, and a 7 is where ive been for the last 5 years. Every day.

Eventually i just kinda resigned myself to it. I couldnt think about the future because whenever i did, all i could feel was: "every moment of the rest of my life is going to feel like this". I accepted it, and i tried to move on. I found someone that i loved enough to stick around for. Someone who made living with the pain worth it.

And now, with this new cocktail of drugs... That burning pain is gone. Or at least, its no longer an electric, burning, blistering, grinding pain. Its tempered to what feels like a candle flame. And for a few rare moments here or there it goes away.

I dont know what to do with that. All of my other pain pales in comparison. They're their own little burning pains, but it doesn't feel like it matters. i can live with them.

And im finally hopeful about my future. Because for a few minutes last week i felt nothing. Blissful nothing. I was so shocked i couldnt even believe it.

When the pain came back i didnt even care or feel cheated, because all ive wanted for so long was just a few seconds pain free, and i got it. I didnt have to be drugged out of my mind (well ... Excluding the cocktail of drugs i was on). I just was. And when it was gone i wasnt upset because i knew if it could happen once, it could happen again. and i had a reason to be excited for my future; my long term future.

Im not just sticking around for other people anymore. Im sticking around for myself too. Because i deserve another five minutes without pain.

(sidenote: do i feel insanely guilty about having a break from my pain; and that its not fair; and that other people deserve it more than me; and that i shouldnt talk about it because its just rubbing it in everyones faces; and that i must have just been exaggerating the pain; and i dont deserve to even call myself disabled anymore; and that im scum; and that i should instead continue to suffer in pain because its all i know, and i dont know how to be myself without pain because its become such an integral part of who i am; and because its who ive been for near as makes no difference a decade; and that im just waiting for the other shoe to drop and somehow prove that im a fraud; and that the pain i had was never real, nor is the pain i have that the meds havent affected; and that im lying about everything; and that I dont deserve help; and that everyone in my life who has pain and hears me talk about this hates me, resents me; and that im terrified of losing the pain because it knows me intimately, and i know it, and that this severing is making me question who i am; and that the answer im getting in my head is: no one; you are no one without this.... Yeah, maybe. Maybe i am thinking that)

[am-i-the-asshole-official]

Would I be the asshole if I refused to pay my phone bill?

📱🧾♿️ <- To recognize my post for later :)

The title is probably already a bit of a red flag, but I genuinely didn’t know how else to word it…

For context: I am a disabled, chronically and mentally ill trans guy who recently turned 20. I haven’t left home yet for a lot of reasons, some being that my parents promised to let me live rent-free so long as I was in college (which I am, just not currently for the summer) as well as the fact that they really haven’t raised me to be very independent and rely solely on them (which is honestly a whole other can of worms), but primarily because of my disability. It isn’t safe for me to live on my own, as I faint commonly, cannot stand up for more than maybe fifteen minutes at a time roughly, and sometimes am unable to eat for long periods of time due to debilitating nausea which leads to weakness. I also have severe chronic pain in my limbs and gut, something I’ve had most of my life, while my chronic illness I’ve only had for about a year and a half now and am still struggling to adjust to.

Because of my disability, I also can’t work a traditional job. I offer art commissions online, because I’m very passionate about art and it’s one of the few things I’m good at, and I haul in a decent amount, but certainly not enough to live off of. I make enough to set aside some good savings (I’m currently saving for a wheelchair, as that might grant me more freedom and the potential to get a job at least for the summer) while also indulging myself in buying the occasional fatty treat (I’m very underweight so that’s not an issue, and I was raised essentially in an almond mom household all my life, so this form of eating is really the only sense of control I have over my life, as I’m fully dependent on my parents elsewise).

The issue has come upon relatively recently. I feel like a huge entitled brat for it as well, and if others believe the same, I sincerely don’t blame you.

My mom sat me down the other day and said that she expected me to start paying at least one bill. She offered my cheapest bill (which would be for my phone; my parents bought it, and it’s theirs, they’re just letting me use it as my own.. I don’t own a whole lot of “my” items myself) and asked what I thought about that. I was fully honest with her: if I had a steady stream of income, I wouldn’t hesitate to offer to pay for all of my bills, but with the way it stands, I just don’t make enough month-to-month to regularly afford the bill. I also do my commissions through my phone, so if I could afford the bill, my phone would be turned off, and I’d be unable to continue.

My mom got very upset and started talking to me like a child (though she really has every right to, honestly, and I know that). She went on a very long rant about teaching me responsibility, and how I can’t rely on my parents forever, and that I need to grow up at some point… All things that I fully agree with. I sincerely want to! I want nothing more than to be fully independent. But the way it stands, my parents cover my entire medical bills and they pay for my meds… And I just don’t make enough to survive on my own, and I can just barely afford a meal or two from a sandwich shop I enjoy twice a month to keep my sanity in check because I’m usually bedbound.

I tried explaining to her that I would if I could, sincerely, and that I’m not trying to be a leech or lazy, but she wasn’t having it. She just scolded me and said that if I can afford to eat out every month, then I can afford the phone bill. But again, with the way things are, I don’t think I’d be able to do it every month without tapping into my savings, which again, is for my wheelchair so I can regain some sense of freedom for myself. I’m seriously debating just telling her no straight out, but I don’t know what the aftermath might look like…

So, sincerely: Am I in the wrong here? Should I just swallow my protests and cough up the money somehow? I really don’t know and would love an outside perspective.

[clanwarrior-tumbly]

Remember the Pokémon trainer ask with having pokepastas in their team? Could I maybe request something angsty?~ basically can I get headcanons of Arven and Kieran’s reaction to finding out Trainer got in a accident and was suffering from VERY lethal injuries and in panic missingno..basically messed them up into a pokepasta trainer,kinda corpse looking and now in never ending pain because of the raw wounds that never fully Heal but ofc take medication to numb the pain down and look out now for they’re friends so they don’t suffer the same fate? :))

Oh btw have a nice day or night!!! Remember to drink water!

Arven

From the moment he, Penny, and Nemona discovered your team enjoying a picnic...he always wondered how you got something like Missingno on your side.

But since it nearly corrupted his damn pokedex trying to just get information on it AND you were reluctant to share your past, he figured you'd just say "don't ask questions you don't want answers to" and end the convo right there.

He definitely wouldn't let Mabosstiff near it.

Last time he went near a Pokémon nobody should've known about...he almost lost his companion.

From time to time, he catches glimpses of your wounds (not during picnics ofc), bandages, and the medication Nurse Miriam prescribed to you, and suggests you save some of the herbs for yourself.

And they do help with your pain management when incorporated into tea or sandwiches (especially the salty herba mystica, which relieves your aches for a little while).

They're not miracle cures, but it's something.

Eventually, there comes a point where you know Arven wants to understand how you acquired Missingno, why you have so many ghastly Pokémon by your side, and why you were determined to defend him and the others down in Area Zero.

So you sit down and explain how you found it by accident in Kanto, caught it, and realized it was simply a lonely creature who wanted a trainer it could love and protect. Like any other Pokémon.

Yet you didn't realize the extreme lengths it would go to achieve that goal....until you nearly suffered a lethal wild Pokémon attack (it was in the dead of night, and you were ambushed while chasing after what you thought was a shiny).

You were bleeding out, bones broken and gaping wounds all over your body, and unconsciously begged for help-

And Missingno somehow heeded your call, escaping its pokeball and reviving you.

But in doing so, you were brought back as a zombie..one who still remembers the pain of that night and often cursed the glitch for not letting you die.

In time though you've made peace with it, knowing you were stuck this way now and it wouldn't let you go...

To the point where it erased its own pokeball from existence and became a constant presence around you, invisible aside from a few occasional glitch particles.

Yet you knew Missingno didn't mean any ill intent--all it wanted to do was save you.

Now you vowed to save others so they didn't suffer the same fate as you, whether that be haunted Pokémon left abandoned in some town or atop a mountain or your human friends in Area Zero.

Your pains aren't as severe now thanks to the meds, and you're grateful for Arven introducing you to herba mystica.

You were afraid he was gonna be freaked out by your story (or not believe you), but..while he finds it horrific and sad at first, he understands you better and is simply glad you're here now.

He's also happy to help his buddy manage their pain better, even if the remedies are only temporary.

Kieran

You had to bandage and conceal a great deal of your wounds so nobody at BB Academy got concerned, with DISABLED giving you a consistent best Heal Pulse to ensure your chronic pain wasn't debilitating).

Even so, Kieran assumes you got better over the past year and is desperate to battle you and win Missingno..something he vowed to acquire after realizing he'll never get Ogerpon.

You try explaining that it's literally impossible for you to surrender it, and it's too dangerous to bring it into a battle anyway, but he thinks you're just lying to him again and bragging.

In the back of his mind, though...he kept wondering why you had so many injuries..

Ofc..he's too focused on being stronger than you to ask you.

But after seeing Missingno come out (in its Fossil Aerodactyl form) and literally glitch Terapagos' beam out of existence and use Cut on multiple falling rocks---he was amazed.

You finally invite him to your dorm to talk after the mochi mayhem events, knowing he deserved some answers.

He sees the pain meds littered all over your countertop, and you finally reveal to him why you need those, why you look the way you do, and why you keep Missingno around:

Basically, after catching and befriending it, you got attacked by some wild Pokémon, and they would've left you for dead had it not intervened.

You made it feel loved, cherished, never using it as a weapon or an infinite item dispenser...and it couldn't watch you bleed to death.

So it saved your life, but it came with a great cost: neverending physical pain with your wounds never fully healing.

You used to curse Missingno for not letting you go, trying to release it several times to no avail, and just being miserable in general.

Yet once you realized it attracted more misunderstood, tortured, and damaged Pokémon to your side..you came to forgive it, knowing it was just like them despite its uncanny appearance: a creature who just wanted to protect its trainer.

Now you take medication (and a few leaves of herba mystica) to numb the pain down, so it didn't hurt as much as it did before.

You wouldn't want anybody to have a brush with death like you did. Not even your worst enemy.

That's why you went so far to protect your friends in Area Zero, especially Kieran.

After hearing your story, he felt so torn up and guilty--and convinced he was being "overdramatic".

You were still suffering all along, for years..and he had no idea, only thinking about himself and his selfish ways and how his pain couldn't possibly compare to-

But you stop your friend from spiraling, holding him and letting him cry out all of his renewed guilt, telling him that his own suffering was valid, too.

He was starting to look like a corpse with the dark circles and paler complexion....and it scared you.

Seems like he took "I wanna be like you" a bit too literally.

But you're glad Missingno saved you--otherwise you never would've gotten the chance to meet him and help him become more confident in himself (ofc you wish things were different before and didn't require you shattering his confidence first).

Since that conversation, Kieran starts taking better care of himself and makes a promise to protect you.

Not from physical threats per se as you're basically immortal, but from rude stares and whispers of how "creepy" you are.

He tends to hug you a lot and lend you his jacket for warmth if you ever get cold in class or in the polar biome.

It does help with the chills you get so often, and makes you feel grateful that you two were still friends despite everything.

[bipedalembarrassment]

Have to vent somewhere or I'll go insane:

Does anyone else have issues with people with much less debilitating illnesses/symptoms trying to act like they experience the same level of disability/pain/all round awfulness as you?

Maybe the sickness is making me petty but one of my close friends/housemate is doing my head in.

She has endo (which no invalidation to endo warriors I know its incredibly painful and has lots of awful symptoms) but she got surgery for it years ago which is meant to (and did) make it much better and from her own account and from living with her I know for a fact she very rarely has any pain or fatigue or other symptoms from it anymore.

She's also able to work a physical labour job 3+ times a week and on top of that goes out and does things (runs errands, sees friends) constantly and in her spare time will garden/mow/move furniture around/do a bunch of errands and what have you.

In comparison between the extreme levels of pain and chronic fatigue I experience I'm unable to work, am able to leave the house maybe once a month if I'm lucky (and have to recover for days afterwards) same goes for things like gardening, if I were to do what she does in a day I'd be in bed for four.

Many days I struggle to even feed myself or clean my pets litter tray.

I've had ankylosing spondylitis without knowing for 8 odd years now and then the onset of the full blown psoriatic arthritis symptoms about 3 years ago now (when I was 25) completely destroyed my life and I still struggle daily with the grief process and ofc with the regular struggles of being constantly exhausted and fatigued and sick and in pain.

I have to use a walker if I leave the house and I'm just all round having an awful time and am pretty damn disabled.

I had to quit a job I loved and the idea of me being able to work with how sick I am is laughable.

Anyway I'm just so frustrated because she'll literally spend the day out doing errands, come home and garden (as a hobby not necessity) and do a bunch of chores and things and while she's doing it will literally tell me and our other (also disabled) housemate how fatigued she is and in conversations will basically assert that her experiences of fatigue and chronic illness are the same as mine.

She very very very rarely extends me any sympathy or checks in on me or offers to like grab me some groceries or anything when running errands (my car broke down and as I can't work I cant afford a replacement, PT is completely inaccessible to me) yet when she has any mild medical issue or needs to go get a medical test or something (something I obviously have to do regularly & never get support for) she will literally like have other friends over to take care of her, complain about it constantly, tell us how depressed she is, make multiple people come to her medical appointments with her (without giving too much away she recently had a medical issue that was potentially worrying, but turned out to be best case scenario, had a small procedure where she didn't have to go under or anything and only had to recover 1 day before going back to work. The results all turned out to be good, the procedure treated the issue and she now takes medication to prevent it coming back.

The entire time she went on and on about it constantly, made multiple people go to all her appointments with her (complained about how sick she was of all the testing/medical admin when she had to go see like 2 Drs, which y'know maybe don't say that in front of your friend who has had to do that constantly for 3 years without any support or sympathy from you and who is constantly being gatekept and gaslit by said system), she also like googled how rare the condition is (which sure interesting) and then multiple times told my other housemate and I and our friends about how rare it is in like this weird almost like bragging or like "see how sick I am" way.

She spent days telling us how depressed she was from all the medical stuff etc.

I really hate playing the suffering olympics and ofc dont want my friend to be sad or struggling so I attended appointments with her and was/still am sympathetic towards her and was like bringing her drinks and things when she asked or coming and hanging out with her in her room when she'd message and say she was depressed.

Like I really don't like playing the "I have it worse than you games" but I am factually much more disabled than she is and she knows this as she refers to herself as chronically ill and not disabled so it just does my fucking head in that she is living with me every day, having the levels of ability, mobility, energy, access and painlessness I could only dream of and she still invalidates me (and our other disabled housemate) constantly by bringing up her medical issues (for instance I just mentioned that I think I'm getting strep throat for the second time this month and instead of showing me any sympathy she brings up how she kept getting tonsilitis years ago when she recovered from glandular fever) whenever I bring up mine and acting like illnesses she's had in the past and doesn't experience any (or only a few) symptoms of nowadays (does this with lots of things, like when she was sick from iron deficiency years ago too) mean theyre like points on her illness check card and means our experiences are the same???

Like she's very much your classic "oh everyones tired" or like will say "I'm so exhausted" while actively running around using heaps of energy on hobbies/fun activities and will then pretend thats the same as chronic fatigue.

Also on top of almost never showing me any sympathy or concern or doing anything supportive for me she's multiple times joked about me being lazy or complained at me for not hanging out with her when I've been stuck in bed.

Has also made comments about like how lucky I am to sleep all day or whatever and idk just frequently doing these ableist microaggressions or just being generally insensitive as fuck and I'm getting really frustrated with it.

Anyone else had this problem of like people who are just straight up factually a lot less disabled than you are trying to act like this and being invalidating af??

Anyway big angry rant probably no one but me will read but fuck youuuu to my friend for being unsupportive and invalidating and shit while my lifes been permanently changed for the negative.

Its almost like cause I'm sick, fatigued and/or in pain every single day I'm not allowed to be upset or get sympathy or support or complain about it because its "too much" or gotten boring or something.

Guess what? I'm fucking bored too

[crippleprophet]

hi i was wondering if you or any of your followers had tips for dealing with chronic muscle pain (specifically hip and knee).

nothing i’ve tried has seemed to help (pt, otc pain meds, ice, heat, rest, acupuncture, cbd lotion, epson salt baths, stretching). and i’ve peen told that the only pain meds that would help would be narcotics (which i can’t take due to family).

also everybody has seemed to circle back to “it’s because of your mental health that everything is shit”. and doctors refuse to do any tests past moving my legs around and poking at them.

so i will try almost anything. thank you

i’m so sorry you’re dealing with this, i have chronic muscle pain & i know it can easily be so debilitating. regardless of whether there’s a relationship with stress or whatever, your physical symptoms should still be fucking treated! the abject cruelty of not managing your pain aside, it’s almost like it’s harder to handle mental experiences when you’re in pain all the time… you don’t deserve this bullshit & i’m really sorry 🖤

i am suspicious of your being told that only narcotics would help tbh — i don’t doubt that many folks need narcotics to effectively treat their pain, & opioids have definitely been the most effective treatment for me when i have access to them (although more for nerve stuff than muscle) but there are definitely medications you haven’t been offered yet that might be helpful.

idk if you suspect that your muscle pain may be related to chronic illness but my muscle pain (including what was dismissed as untreatable fibromyalgia symptoms) improved dramatically when i got on an immunosuppressant (hydroxychloroquine in my case). if you haven’t gotten a basic rheumatology blood panel done by your GP it could be worth a shot as my elevated inflammatory markers led to that prescription even though i’m definitely underdiagnosed.

i’m also like, really pissed nobody’s given you a muscle relaxer jesus christ. i’m on 4mg tizanidine from my PCP & it’s been immensely helpful for my muscle pain, i choose to take it probably once a week because it’s more effective at knocking me out all night that way lol but i also use it as a rescue medication when i’m having severe cramps. really helpful to just get a fucking break & some decent sleep every so often. in that thread i’m planning to ask about starting prazosin at my next appointment, it’s prescribed for nightmares (which i def have lol) but can prompt a certain level of muscle relaxation which is part of how it helps with sleep

idk if this is an option for you due to family etc but delta8 (weed equivalent that’s technically legal in the US) has been vital for managing my own pain. expensive as shit but so it goes.

idk if you already use a mobility aid or if that’s an option for you but it could be worth looking into! redirecting some of the force applied to your muscles might make things like walking easier or could help with balance if you experience sudden weakness / cramps.

super depends on your situation but it could be worth paying attention to your feet as well, getting plantar fasciitis house shoes vastly improved my knee-hip-back pain, knees in particular. mine was more joint related than muscular but from studying biomechanics it’s all interrelated & from my perspective anything that helps may make it a bit easier to keep going until you find a better long-term solution. so even if it doesn’t seem related to your pain if there’s anything that might make your life easier right now i encourage you to consider it!

other folks feel free to respond with things that have been effective for you! i really hope you find some solutions that make things more bearable for you 💓💓

[gubbles-owo]

the oc ask meme,,, urchin, mantis,,

13 & 19 for both,,,, please,,

13. How do they deal with pain (physical or emotional)? Oh Mantis can take one hell of a beating, physically. She may stand at a breathtakingly steep... 152cm tall (on her toes), but true to her real life animal counterpart (the mantis shrimp!), she packs one hell of a punch. Doesn't bruise easily. The real hard hits will still get through to her though. Tries to act all tough but you can clearly see through the act. "Yeah, I'm fine!! ow fuck shit ouch Never felt better!! >:D" Emotional pain... similar response. Seems fairly resilient, but she's not very good at hiding it when something's wrong. Either she'll deny it, or downplay its effects, only admitting with a strong enough confrontation, or an emotional pain too great to bear. Takes a lot to break her. Urchin on the other hand... ho boy. So physical pain. Fun fact, Urchin is ✨ chronically ill! ✨ Just imagine like, hundreds of thousands of little spines all over your body that you can retract at will. Now imagine you don't have much direct control over them, and instead seem to be a more reactionary response of the automatic nervous system-- at least to the best of your knowledge. Now imagine all those little spines are ever so slightly misaligned with where they're supposed to come out! Congratulations, u experience chronic debilitating pain!! So yeah, given the magnitude and agonizing breadth to which their illness pans out, Urchin has some incredible fuckin' pain tolerance. Winces, deals with it in the ways they've learned how to over the years, though it ultimately results in them not getting around much. Mostly solitude, sedentary. Not out of choice, of course. They're afraid of getting too close to anyone else, physically or emotionally, and accidentally harming them with their own stupid sickly spines. Additional pain-- that is, from outside the body-- tends to throw them off kilter, upset the ANS, and resultingly make the internal pain worse. Fun! As for emotional pain... ouhhf... let's just say Urchin has a lot of baggage, and lots of alone time to ruminate on it all :3c 19. How do they connect with the people around them? Love language, how they offer comfort, etc.

Mantis (similarly to Cuttle) loves meeting new folks, but is probably not quiiite as charismatic. Her love language is typically intense/loud, but it can take more subtle forms as well. For example, Shrimps loves challenging those she loves, both in friendly competition and in their own assumptions, in the interest of spurring some sort of growth or new perspective. She will (lightly (for a mantis shrimp)) punch ur shoulder and u will like it. Contrast that with the little things... like, okay, let's not mince words here: Mantis can be absolutely oblivious. Many things tend to sail clean over her head. No thoughts, head empty. However! She will notice little things about you. Your shuffles and posture adjustments. The way you fidget with certain objects. The one or two particular photos or memorabilia tacked to your bedroom wall. Small things that often draw your attention or otherwise indicate where your mind might be at. And often she'll make lil gestures that demonstrate such fine observations. Like "Hey Urchin, I notice you kinda nervously tap your keyboard when you're at your desk, so here's a matching keycap that i affixed to a lil box, so you have something to keep in your pocket when you're elsewhere!" I wonder how she got so selectively observan- autism its definitely the autism On the other hand, Urchin... has an extremely difficult time figuring out just how to connect with those around them. Can I hide in my room? No, we're out of the apartment. Can I run off to some other room where I can close a door, or get some space to myself? No, s-so I really have to stand here around these other people? ...shit. Um. How do interact. Is my presence bothering them. What if I say something rude or insensitive. What if they bring up something upsetting or triggering. How do I get out of here. Fuck. It's no secret that Urchin does not hold themselves in very high regard, so how is it that someone else could love them? They must be manipulating someone in order for them to express such feelings... right? Throughout their life, their presence has ranged from passive lack-of-existence to "burden". They do not know how to properly express love. They do not know how to give comfort. They don't know how to interact with anyone without believing they are causing harm in some way. So how the hell do they communicate with another person when they're slapped in the same room together? Simple: avoidance, social awkwardness, and constant self-doubt. Hope this helps!! :3c

[compo67]

struggle bus

this is a mental health/chronically ill post/personal info dump

cn for suicidal ideations, bipolar disorder, depression, mental health

my therapist is on leave for a month, so in the meantime, i'm meeting with my DBT group leader for therapy once a week

the mental health struggle has been real this past month. lots of depression, anxiety, and voices that get so loud that tell me what's even the point of living

i struggle a lot with managing my bipolar disorder and depression. i struggle with getting dressed and showered most days. even the stimulants i'm on don't help as much as they used to before. i spent all day last saturday asleep or crying. i lost a whole day of working on my big bang, something really important to me, because i just couldn't wrangle my brain into functioning in a positive or healthy way

i'm hopeful about sitting with my psychiatrist this thursday and talking about switching antidepressants and maybe upping either the mood stabilizer or the anti-psychotic

i'm also hopeful that he'll be on board with one of the two treatments my other providers have recommended: keta and TMS

both are concerning to me, but they're both recommended for treatment resistant depression

i can't hardly picture what it's like not to be depressed

i know this might be weird to read, because i write such happy/romantic stuff, but it has been a continuous struggle to deal with being so depressed, especially in the past 2 years

i can't keep up writing or my patreon as much as i want to because i'm either too depressed or in too much pain and i just... feel like i let people down because of it

i have been avoiding doing really important paperwork (applying for financial hardship assistance and LTD stuff)

now it *has* to be turned in and the deadline is looming

coming back to this post a few hours later and i feel a bit better sharing this. it's important to me that i share not just the happy stuff but the other stuff that's going on too

i know i will get out of this spiral/flare. it's going to take time and effort, but i *want* to do it

it just gets really hard sometimes

especially when i'm under so much pressure from financial stress

like, i am doing my best to take my benefits and dig myself out of debt while at the same time trying to stay afloat with things like my car payment, car insurance, gas, phone bill, groceries, medical/dental premiums, medical expenses, and everything else

i am hopeful that doing some light SP work will be another income stream and lessen the pressure, but i can't depend on that until you know... i actually start. and who knows how many hours or projects i'll be offered and can physically do?

this flare up has just been awful. i've been flared up since the end of march and prednisone is not doing the trick, which means it's not inflammation, it's probably just EDS

i say just EDS like it's a cold or something when it's a genetic debilitating disorder/syndrome

i think EDS is one of my biggest struggles. it just takes so much energy to keep my joints together

sigh

i just want to be back working full-time, thriving and surviving on my own

but it's not possible at the moment

if i go back to work too soon, i'm just going to wind up in the same place i was in 2021--a big mess

i've been on and am still on the struggle bus

even if it's a struggle bus, i still want to stay on a bus

i still want to be "here"

even if some voices get really loud and try to convince me otherwise

if you made it this far reading, please know i appreciate it

you didn't have to read this but you did and therefore, i <3 you

things will get better.

[acacia-may]

Some Blog Updates, My Apologies, and Words of Explanation of What Has Been Going On Around Here Lately...

I really am sorry for the sporadic way that things are having to be run around here. For everyone who has pending asks and requests from months ago, I am so sorry I can't fulfill them for you right now. I have not forgotten about you and still plan to respond to all the asks as soon as I am feeling better. In an ideal world, I would respond to all asks in the order they were received and wouldn't have so many promises still pending out there, but unfortunately, that isn't something I can do right now due to serious chronic health issues.

I have still been writing a few self-indulgent pieces as a form of escapism & coping when I can, if only to try to keep my spirits up during what has been an extremely difficult time for my health, and I hope you all understand that this isn't me ignoring you in favor of working on personal projects rather than on fulfilling my obligations. I do genuinely feel very guilty for leaving you & your asks/requests hanging, but honestly writing "self-indulgence" is generally all I even barely have the energy for at the moment when it comes to fic writing since it takes the pressure off of making something "perfect" for the one who requested it and I find a little extra energy in my own passion and self-indulgence for the topic.

That said, I started that new ask game with the song + heacanon because it was easy for me (and didn't require a lot of effort or writing on my part) so I thought it was something I could actually fulfill for you as a thank you for being patient while you all wait for the bigger, more time-consuming asks.

I really am sorry for not explaining this better before, and if anyone has been confused or hurt by this, I am very, very sorry. That was never my intention. I have included more details below the cut in case anyone wants a more detailed explanation. These are not excuses, just my attempts to explain where things are and what's going on since I understand how it may look out of context and I didn't want there to be confusion or hurt feelings.

Thank you all for being so kind and so patient and for sticking around through all of this chaos! Cheers & much love to you all, friends! Please take care of yourselves. 🥰

As I'm sure some of you know from previous posts, I have been on and off hiatus due to severe chronic health issues for the past several months. The flare of my illness plus accompanying debilitating fatigue has unfortunately forced me to give up most things in my life (both online & in the real world) while I go for treatment & try to recover. Please know that it has never been by choice that I haven’t been around.

All of that said, writing fanfiction has always been a sort of an escape for me and a way for me to cope when I’m dealing with these kinds of serious health problems, so I have still been writing a little bit whenever I am able as a sort of outlet & escapism, but it’s mostly only the most self-indulgent pieces--trying to keep up spirits during what has been a very difficult time. To be perfectly honest with you, I feel the writing I have been doing recently has not been my best work, and I know there have been lots of problems with it (i.e. continuity errors with the canon, dumb spelling mistakes, and grammatical errors ect.) which have been kindly and constructively pointed out by others or mortifyingly noticed by me then fixed--and I do feel a little insecure about the roughness of my recent work to tell you the absolutely truth. 😅 That said, since it is mostly all self-indulgent, I tell myself that it's okay that it’s not perfect because it’s just for me.

Which leads me to the matter of my inbox and all the pending asks. I am so sincerely sorry for all the delays, and I have felt so guilty for having to leave everyone hanging. However, as you have probably guessed from my bleeding heart for fictional overachieving perfectionists, I myself am an overachieving perfectionist, and I know I would feel much guiltier trying to fulfill my requests knowing that whatever I could come up wouldn’t be my best work (since I am unfortunately lacking the health and energy to do that at the moment). I always want to give my best work to everyone who writes into this blog, but this is especially true when you have already had to wait such a very long time for something I have promised. I spend a lot of time on all of my headcanon and fic requests and answers to asks because I really just want it to be perfect and good enough for the person who asked for it. Since I feel like I can’t do that right now, I have decided to put the majority of my asks on hold rather than trying to fulfill asks with what I know will be my roughest work. I promise if you do have an ask in my inbox right now, I see you and I love you. I have not been ignoring you or forgotten you. I just want to give you my best work, and I can't do that right now so I've been holding on to your ask until I feel that I can.

All of that said, I have felt so bad and so guilty for leaving you all hanging (especially while I've been working on personal projects) so I thought of that new game I made because it was something I felt I could actually fulfill and complete, since it didn't require as much effort or writing on my part. It mostly consisted of songs that I pulled from fandom, character, and ship playlists I had already made, and the headcanon tends to go with the song in such basic terms it almost writes itself: i.e. the song mentions going to the beach, so the headcanon is this character’s favorite beach activity is building sandcastles (or something like that). It’s honestly just kind of silly but I felt I owed everyone something I thought I could do (if that makes sense?). The writers ask game I reblogged is just personal questions about my writing process—easy, short answers and low pressure, so that’s kind of in the same “I can do this category.” I plan to wrap up the asks for both of these games, and I don't know what will happen after that. Maybe we'll have to keep playing easier games like that for a little while or (hopefully) I'll be feeling well enough to circle back to more serious, time-consuming asks. I honestly can't say.

In the meantime, I wanted to reiterate how sorry I am for all the delays and also if there has been any distress, disappointment, miscommunication, or hurt feelings for how things have been having to be run around here. I'm sorry this blog has not been run in the way I had hoped or planned, but please know I am still trying my best to make wholesome content for you all to enjoy.

Thank you so much to everyone who has stuck around during this chaotic and difficult time and for your continued support! Cheers & Much Love!! 💕

[babs-zone]

a covid conscious road trip diary

los angeles to portland and back, no viruses allowed | april 2023

by babs ✨

hi yes good to be back n writing here on tumblr dot com, and what better place to start than with a little joy? in this series (a companion guide to my tiktok vlogs) i'm going to share how my partner and i traveled from LA to PDX and back without contracting the novel coronavirus.

click here for the full playlist on tiktok. click here for the above video.

⏤

who this is for:

people still using mitigation against SARS-CoV-2 looking for ways to get out and have a lil adventure without throwing caution to the winds

people who stopped using mitigation and are tired of getting sick

people who stopped using mitigation and want to start again

anyone else that finds it interesting ;)))

who this is not for:

people who don't think SARS-CoV-2 is a big deal and don't care to have an open conversation about why that is

people who want to police others behavior— i understand that we may not always see eye to eye, make exactly the same choices, etc, but there is a way to have those conversations while still acknowledging the reality that i have never knowingly been infected with SARS-CoV-2; while there's no accounting for luck, there's got to be something to what i'm doing

on that note, let's talk about my covid reality so we have a baseline knowledge of where i'm coming from:

29 / have fairly stable lupus and sjogrens syndrome / white (ashkenazi background is the lineage to carry the autoimmune diseases with 3 known cases in my fam) / (F) on medical charts but she/they to y'all tytyty / queer

my most *acutely* debilitating recurrent symptom is head and facial pain, which can be (though isn't always) triggered by mask wearing. i experienced this pain prior to the pandemic, but as time has gone on, i've had multiple episodes of pain directly connected to the pressure of a mask on my nose/sinus area (kind of in the same place as the malar rash), that extends into my eyes, up/over/around my skull, and into the clothes-hanger area of my bag, which can then in turn irritate my ribs (though not always, chronically ill people know how these things can cascade). this pain leaves me with intense sensory sensitivity (so in the dark, quiet, unable to do a lot of things), and can also include vomiting. for this reason, i try to spend as much time outside as possible.

10a-6p day job in communications where i work in person ~twice weekly at minimum (gotta Make Content and photos), as well as freelance photography, so my work is hybrid. in 2021 when i returned to work after i got vaccinated, i was still working the same food service job i'd been at since 2016. i ultimately quit that job in september of 2021 when i wasn't able to take enough time off to safely travel to photograph a wedding i'd committed to (driving takes way longer than flying), but had that not happened, i could've easily continued in that position despite the risk, as i'd structured my freelancing around that service job.

polyamorous and live with 2/3 of my partners (one works hybrid, one in service so all in-person), but we all have our own bedroom (even if we sleep in each others sometimes)

our household is in a pod with our other partners' household, which is three people in two bedrooms, all of whom work from home

my entire pod masks indoors outside of our homes unless the environment is intentionally controlled (prior testing, planning, etc); this has been a basic rule of thumb that has not changed the entire pandemic

a few of us, myself included, have access to tests through our jobs, so my household ~usually~ gets two PCRs and two RATs per week

both households have at least one HEPA filter (though all the filters need changing ngl)

both households have one aranet4 CO2 monitors, which is passed around based on need

we've had two covid positives in the pod: separate incidents, both in 2022, where both individuals were successfully isolated before further spread. blessedly, no longcovid symptoms from either of them.

so going into this trip, we brought

a good plan based on the swiss cheese model (above)

lots of different kinds of masks, as switching up the way pressure hits on my face can mean longer time able to mask

a bunch of covid tests

that's it

we considered taking one of the HEPA filters, but, as mentioned, they need changing and we just didn't have time to do so

likewise, didn't bring the CO2 monitors so others could use

ok, i think that's good background, now on to the fun!

⏤

day 1 - LA to silicon valley

after packing up the car, our first stop was coffee at the palm in burbank (which has online ordering and a walk up window), then we drove drove drove.

next stop was for lunch in bakersfield at vida vegan eatery, which has outdoor seating, but it was covered on three sides with plastic. we could've asked the folks working to lift the plastic, or we could've just taken the chance and eaten outside there regardless, as we would've been the only ones out there, but we chose to eat in the car, because this was a driving day anyhow.

drove drove drove some more thru gilroy, the garlic capital of california, where we masked up to stop at a lil farm stand.

made it to silicon valley, where we stayed at the sunnyvale ramada. we looked at a lot of chain options in the area, and chose this one not because it necessarily had the best reviews, but because it clearly had rooms that opened to the outside as well as the AC unit visible on the window, so the room takes in fresh air.

when we arrive at hotels, we mask up while do the requisite once-over (check for bed bugs, etc). we turn the ventilation up real high, open any windows, and prop the door open. masks stay on til we get all the bags in, when we usually settle in.

on this night, we threw on some nicer clothes and took a rapid test (negiii) before heading out to grab my cousin for dinner. they mask regularly, and also rapid tested negative before we headed over. even so, we keep masks on and windows down when we share the car with anyone outside the pod.

ended up on a nice pedestrian street in mountain view for dinner outdoors at yugen ramen and it was so quiet; we truly had the place to ourselves. finally, topped off the night with a quick pop into the patisserie down the street, maison alyzée. it was close to closing, so mostly empty outside of the unmasked proprietor, but, to be frank, we went into this trip assuming we'd be the only ones masked anywhere.

alright that's all for day one, eleven more to go!

[chorizoconpapas]

i am doing pretty well in life honestly, like i own my car and my home, i make a good income and have a good amount of savings, i can buy everything i want and need, go on vacation on average every other month, i love my family, i have a good relationship with them and see them regularly, i have a few close friends that i consider to be family, and current job instability aside, i'm in a career i love that pays well and has a lot of upward mobility, if i succeed at nursing school. my mental illness and chronic health problems are well controlled and i can afford my meds/health care even without having insurance. i'm at a point where i feel comfortable with my body, that i can start caring about my appearance again bc i can balance looking good in a way i like that also doesn't trigger debilitating dysphoria

there's still a large part of me that feels like a failure bc i don't have kids yet but realistically for my generation in this economy? having kids in your 20s is not viable, and i know this, it's just hard to feel it. i don't actually care about having a partner, i know myself, like unless i found someone extremely similar to me, it wouldn't be fair to the other person. i just like having things checked off like yeah i have this life experience.

i'm also not doing anything crazy to help the world like yeah my job definitely does make the world a better place but it's very small scale stuff. which like i'm always telling myself to be like santa teresita, but it's still hard not to want to have a big impact. and i'm not academically smart anymore which does hurt but. again not actually indicative of worth, i just have to drill it into my head

idk it's just like. by most metrics i honestly have an amazing life and am doing really well. i need to truly focus on that and learn how to not just stop thinking about negative stuff, but truly believe in the positive stuff.

and also i do think that i just genuinely enjoy life less than a lot of people. like i am learning to be glad that i can be so content, even if it means i won't get to experience the highs that so many people talk about. like yeah it would be amazing to experience life the way others do, but i think being autistic makes me different in some small but fundamental ways. i think my life would be worse if i felt things more strongly.

[j0kers-light]

Hi chaos! I hope you’re having a good day!

I saw your headcanons post for joker x reader who struggles with anemia & loved it so, so much! It’s always lovely when we get to see our favorite characters caring for us in little ways like that, especially when it comes to our daily struggles that often go largely ignored by society. I was wondering if you’d be willing to do a joker x f!reader with Ehlers-Danlos Syndrome sometime? And as always, no pressure at all <3

— 🌹

Welcome my sweet 🌹anon!!

You ask, and I deliver! I had to do some extensive research with my mom to make sure I was accurate with this request! I learned so much via articles and short documentaries! Shoutout to my chronic pain sufferers! Chaos acknowledges you and I loves you!!

If anything doesn't sound right let me know 🌹 anon so I can correct it! I hope you enjoy! There are several sub-types of the disease but we'll focus on hEDS for this head canon 🖤✨

Since your disorder is rare and hereditary, there isn't any known treatment or any medical studies/research done to cure the illness. There isn't even a test done to diagnose its so vastly ignored! 😡😡

Society turns a blind eye to _EDS, simply chalking it up to hypermobility and being non-life threatening. WRONG.

hEDS is life threatening and sources fail to address the lifelong chronic pain and other debilitating issues that the rare disease causes. There are 13 sub types with their own crippling ailments.

Joker would hardly notice anything wrong until you go and hurt yourself, which is rather easy due to your fragile skin and joints.

Your body doesn't heal well after injury so bruises linger, scars are permanent, and dislocations are a common occurrence. Yay to pain. 🙃✨

Growing up, it was cool to show off your double joints and overly flexible body but as your age hit the double digits, you noticed the complications of your parlor tricks pretty quickly.

Muscle weakness was the first indicator followed by scarier issues like weak blood vessels and potential organ ruptures. Chronic pain is a reality that you have to endure since your body fails to function properly.

Life grinds to a halt when you have a flare up and Joker arches an eyebrow when you stay in bed for days at a time and work remotely.

Just moving is an impossible feat and your body punishes you for defying its demands for rest. You still have to live your life! Somehow.

Joker tries to crack jokes but you roll your eyes and ignore him. You’re just not in the mood.

He doesn't understand how you can go from practicing yoga in the sunroom to being bedridden in the same hour so he assumes you're faking being sick and that thought makes you cry.

Knowing that your lover believes that you are acting, hurts more than your aching joints and Joker immediately notices when your mental health begins to decline.

Now he's worried. When you can, you do as much as you're able, never knowing when your body will betray you and confine you to bed. Every moment is precious and Joker will never understand that.

Life returns back to "normal" but Joker demands answers. He's still in shock.

Weren't you on death's door just yesterday? Now you're returning to work, laughing and smiling, as if nothing is wrong. He doesn’t know what to think.

So he disappears to search the internet and after hours of clicking away, he's just as confused as when he started. (I feel you J..)

Joker refuses to believe there is nothing he can do to help his Bunny. This hEDS can't keep you down forever. Right? 👀

Why aren't there any studies, or any institutions pledging to find a cure for this?! Does he have to kidnap a doctor or two to get the ball rolling?

Joker remembers he does have a doctor on his payroll. He calls up Sarai and bombards her with the same questions he typed into Google.

WHAT IS WRONG WITH MY BUNNY?🧑‍💻

Sarai doesn't give him much else to go on except keeping you comfortable, well medicated if you take any, and to continue your physical therapy but not too much exercise as to aggravate your joints.

Great... so he's back to square one!

Joker hears you groan from the next room and goes to check on his poor Bunny. He would find a way to make you feel better himself.

You had dozed off for a long quick nap and woke up to the sound of something falling over in the bathroom.

It still hurt to move but at least it wasn’t agonizing anymore. This current pain level you could tolerate.

You were willing yourself to toss the covers back when Joker appeared in the doorway looking rather sheepish.

“Hey doll. Uhh are ya feeling up to move?” He scanned you over as if he could gauge your pain tolerance by sight. Your small smile gave him some hope.

“Mmm. I gotta get up and fix something to eat.” You were weak and probably dehydrated from lying in bed all day, but that was to be expected.

Joker watched you swing a leg over and rushed to your side. “I uh.. ran a bath. If ya want. A Reddit post mentioned ah.. hoT water being helpful.”

It didn’t dawn on you just what Joker was saying. All you heard was the latter part of his sentence. “You have a Reddit account?”

He smacked his lips while helping you slowly walk towards the en-suite bath. To your surprise, the bath was waiting for you with a rolling cart next to it, hopefully with something to snack on.

You were speechless. “J… you did all this for me?”

He looked away and you got the impression that he was blushing. He still had his clown makeup on so you couldn’t tell for sure.

“Thank you J. I mean it.” He helped you sit on the nearby wooden bench after you kissed his cheek. “Um. I can undress myself.. if you need to—ah! Okay! You’re seriously doing this.”

Joker started with your socks and worked his way up until not a single thread of fabric was left on your body. You felt so exposed sitting there nude while Joker dipped his hand into the bath water.

It was hot enough to be medicinal but not scalding. He snapped his fingers and dashed over to the storage area to grab your bag of epsom salt before dumping a few cups in.

You got to see a rare softer side of Joker hard at work. No one would believe you if you reported this. The Joker, Gotham City’s worst nightmare, was preparing you a bath with the greatest care.

“All-right-yyy ya ready pretty girl?” Joker’s voice snapped you out of your daydream. He playfully flicked some water at you to get your attention.

You couldn’t flinch away and huffed your displeasure.

“I couldn’t resist, Bunny. Now in ya go! Hold onto my shoulders, yeah?” He picked you up as if you were made of glass and gently lowered you into the bath. “Easy doll, I know it’s hot. Just relax.”

Joker shushed any whimpers you made and held you steady underneath the water. For the next few unbearable moments, Joker was right there whispering sweet nothings to calm you down.

Finally you relaxed with a deep sigh, “This is perfect.”

“Good. If ya want, you can rest a bit. I’ll keep you.. well you know.. from drowning. But ya do need to eat something first. Here.” He dried his hand off and fed you a [insert favorite snack].

You felt like royalty and Joker had no issue helping you adjust to the role. He fed you piece by piece, offering you sips of water in between while holding your hand and rubbing soothing circles on your skin with his thumb.

The contact warmed your heart. Joker may not know much about your medical condition, but he would always be there to support you.

You couldn’t ask for a better partner.

[star-anise]

This might be an odd or heavy question so I'm not exactly expecting a response, but what exactly is disability? I'm aware that typically people who need glasses aren't called disabled, that there are invisible and mental disabilities, that the legal definition is flawed, et cetera, but the exact definition still escapes me.

(the catalyst for me asking is my piling health problems; chronic bronchitis and several kinds of heart problems cause me to be unable to climb more than two flights of stairs without breathing like a fish and yet I still feel guilty for taking the elevator. I'm just trying to get a definite answer so my own mind would stop nagging me about it)

This is exactly my shit because disability activism was so important in shaping me into the person I am. I'm neurodivergent, but also physically disabled; I have congenital birth defects in my hands and feet that fuck me up more than you might expect, I'm mobility impaired, and now live with chronic pain. My life is way better when I don't have to take the stairs, I can only work about four hours a day, but I don't meet my government's definition of "disabled".

Disability has been an intense battleground. For centuries society has had a very narrowly defined view of disability, and treated disabled people in a very particular way. The Disability Rights Movement, meanwhile, has involved disabled people getting together and saying: The way we are viewed and treated sucks! We don't like it! Things need to change!

So one major key to things is the social vs medical model of disability. The medical model views disability as when someone has a serious impairment or illness that prevents them from being normal and healthy, and needs to be medically treated or cured. The social model views disability as the result of society failing to accommodate the full range of variation in human ability, which fails to allow the disabled person full inclusion.

Like, if someone cannot walk and uses a wheelchair, and therefore cannot get into a building, the medical model says we should focus on making them able to walk. The social model says that we should focus on making the building accessible for people with wheelchairs. A major issue here is universal design, the belief that our buildings (and by extension, our institutions and society) shouldn't just be set up for abled people. It should anticipate the presence of disabled people, and plan to include and accommodate us so that we can enjoy an equal level of autonomy and inclusion in society as everyone else.

Disability is really complicated partly because it's really diverse. There are so many different ways of being disabled. Neither of these models is 100% right or 100% wrong. Some people love what makes them different from the norm and don't believe it should ever be taken away or cured; others hate their disabilities and want them to go away yesterday. An operative issue to keep in mind is when the medical and social models are useful.

Under the social model of disability, people who wear eyeglasses are a perfect example of an impairment that's socially accommodated so that it isn't normally debilitating. Society doesn't have huge narratives about how it's tragic or pitiable when someone wears glasses; it's not generally seen as heartbreaking for parents to take their child to the optometrist. Glasses are more-or-less affordable to the everyday person. It is, in fact, solid evidence that we can and do treat some kinds of physical differences as routine and unremarkable.

So at the base of it, here's the reality about the definition of disability:

Abled society has historically had a lot invested in keeping "disability" as a very narrowly defined category. Only the most truly deserving get the special resources that make up for the fact that they're excluded from employment and public life. There's only one elevator, so you'd better make sure that you really need it before you use up that scarce resource.

Disability activism, meanwhile, benefits from making the definition of disability as broad as possible, to argue that we aren't rare exceptions, we're 1/5 of the population and shouldn't be excluded to begin with. Literally anyone could be hit by a bus tomorrow and become disabled. Excluding us and denying us our civil rights isn't acceptable. If too many people are using the elevator, maybe the building shouldn't rely so much on taking the stairs.

This ties into what the disability community calls "the curb-cut effect". When a space is made more accessible for people in wheelchairs (by putting in curb cuts, for example), a whole lot of other people benefit: Parents with strollers, delivery people with hand trucks, travellers with luggage, and ordinary pedestrians who just found them easier to walk across. The design feature made life for everyone so much better that it became adopted everywhere, and demanded as a standard piece of urban architecture. Wheelchair users benefited because everybody wanted the kind of space they could travel in.

When you use a resource or accommodation intended for disabled people, you reinforce the idea that disabled people are common and should be routinely included. Although this sometimes puts stress on a system when multiple people are using the resource at once, the solution should be to increase that resource's availability, not to decide who needs it less and kick them out.

(This topic reminds me that hey, I'm disabled and don't make a lot of money because of it. This week I'm trying to find an apartment that doesn't require taking the stairs, but those are literally twice as expensive in my city. So if you want to support me for the work I do, here are my Patreon and Paypal!)

[timemachineyeah]

I am so tired of being disabled. Having one of those Bad Health Days of the kind that make you want to find every single person who ever even implied this was all in your head or something you could will your way past and just, like,

not even hurt them really

just force them to feel it, and then tell them to do the dishes or something while feeling it.

Because when I do not feel this bad, sometimes I get down on myself and think, "maybe other people really do feel as fatigued and impaired as I do" but that's when it's like...it's normal place. Like a 5-6. Where it lives. Where even when I'm being kind to myself I can wind up thinking, "I mean, if I really had to, I could make myself do things, so therefor doesn't that mean I should? And am being undisciplined to not?"

But then it's to 7-9, where it does its dirty work, and I'm just like, "No actually, I could not. Not even if I had to." Like a man could come bursting in here with a fucking gun right now and point it at me on the couch and be like "run", and I'd, like ??? shuffle out ??? or stand and then fall over ???

(and it usually gets to that place because I did force myself to do things anyway while at a 5-6)

Thought this at work. My work takes me to courthouses, where they have things like security and metal detectors and also sidewalk chalk vandalism that says things like "GO BUY ANOTHER AR-15" and "BUY MORE GUNS"

Which means, much like any student attending an American school, or anyone who has ever been to a bar, club, movie theater, concert, hospital, church, or any public location in America, I have had the chance often to think, "What would I do if a gunman showed up right now?"

On bad disability days, days like today was for about an hour where I felt very very bad (but in a boring way that was better than how I feel right now), or like a lot of days where I kind of have to physically coerce my own body to do the thing, when that hypothetical pops into my head, "What if there was just a guy with a gun right now?" I think "Oh, I would absolutely not be able to run. I am so fatigued I don't even know if I'd be able to react."

Thinking about that post about chronic pain. The one that's like, "broadcasting our pain constantly would just be exhausting" (or something like that), as like an explanation for why someone can be in a LOT of really debilitating pain and still be, like, normal on the outside.

And like, yeah, constantly broadcasting how bad you feel is exhausting. And you know what fatigue doesn't give you any extra of? Energy.

But not only is broadcasting a feeling tiring. Feeling is tiring.

See, this is where I start to see how people can mix up chronic fatigue and depression. "Are you sure it's not just depression?" Right? Because a symptom of depression is not feeling anything. And also because depression can have physical symptoms. And because depression is legitimately debilitating on its own and if that were it I shouldn't seek a need to find a more "legitimate" explanation for my illness, as depression is a perfectly legitimate illness and can be disabling all by itself.

I think when people see people with chronic physical illness getting insistent about the physical nature of their illness (see and here is where things get pedantic, of course, because where is the line between a physical, mental, or neurological illness in a microscopic macroscopic strict taxonomy kind if way?), they assume those people are, like, just unwilling to believe their illness could be a mental illness due to stigma. But that's not it. At least for me, it's not it.

(I have, and have had, some great doctors in the ~eight years since this all started, but my first doctors when this all started were not).

But the thing is, at least for me, do you not think "maybe it's just all in my head" wasn't one of the first places I went?

The only way their way of thinking starts to make sense is if you take it to mean, not, "I think you might be dealing with debilitating mental illness, and that might be the best strategy to seek care", but "I think you don't want to get better." And of course, that's wild, because anyone going through what I'm going through would want to get better. And on days like today that is so apparent to me. So the only conclusion becomes, they do not believe me when I tell them how bad it is.

That's what becomes implied. Because if you wanted to get better, you would. It's not really about whether they think my illness is truly mental or physical, it's about whether my illness is real at all. To view me as maybe wanting to keep my symptoms, they have to be able to view them as tolerable, as not that bad, as worth suffering for the excuse to play hooky on life. And the only way they could view my symptoms that way is if they think that I am faking my cooperation, faking my effort, faking the severity of it, lying.

Especially when you are talking to Americans. Land of the Self Help Book. Going to the doctor costs money and I can watch yoga videos online for free. If it's just about getting more sun and talking through my feelings and being kind to myself, uhm, I have done that before. I have gotten so good at that. Let's go. Make lists? Identify problem areas in my life? Clean my damn room? Those are affordable and easy, sure I will do that.

Like do you not think I have done that? Or that I wouldn't if I could?

And not because I don't feel like doing it, in the send of "not in the mood", but because I am not reasonably able to. Which I might express out loud as, "I don't feel like I can", or "I don't feel like doing it", and which a listener may then take to mean, "I lack confidence" or "I am not in the mood", but which in practice means, "I physically sense that I cannot" or "I feel physically restrained from doing it".

But because of the way we use "feel" to mean both "emotion" and "sensation" it comes across twisted. WAIT

EMOTION

SENSATION

Is that the difference??? Wait I feel like I'm having an epiphany.

AUTONOMIC SYSTEMS = your weird body. INPUT and OUTPUT. The shit Cognition don't know 'bout. Takes inputs from everybody, gives outputs to everybody except Cognition. Cognition has to learn about everything it does secondhand from one of the other actors. Other actors can become permanently or temporarily, partially or wholly, incorporated into Autonomic Systems when Cognition loses contact with them.

EMOTION = moods. INPUT and OUTPUT. Like Sensation, it is received by Cognition as External. Unlike Sensation it always has an internal bodily source (so far as we can measure). It receives Inputs from all but Action. Cognition is only partially aware of it. These are basically Sensations that would not exist without Cognition, and are more easily influenced by Cognition than regular Sensation.

SENSATION = physical sensation. INPUT and OUTPUT. Listen, even if your emotions can give you physical sensations, we all recognize the sensation and the emotion are not the same thing? Like how taste and smell are buddies but they still have different jobs. Sensation can have an internal or external source. Sensation can only get inputs from the Autonomic Systems, so gets all other information secondhand. Sensation can only Output to cognition. For this reason Sensation is often (but not always) the most reliable at communicating what Autonomic Systems are doing to Cognition. Sensation is the communications system between not only your Cognition and your Autonomic System, but also your Cognition and the external world.

COGNITION = thinking/intention. INPUT and OUTPUT. What some might (erroneously, in my opinion) call the "self". Your youness. The you that is on purpose that you feel you understand and control. This is where imagination and stories are. This is where math is. This is where your friends' names are. This is where you notice your cat just took a really stinky shit. Your mind palace. Your consciousness. Your continuity of self. IDK. You get it.

ACTION = doing. OUTPUT. You know how you do stuff. And people can see it and hear it if they're around. And you mostly do it on purpose but not always? Ye.

Okay so like if we think of mental illness, mental illness is usually, like and EMOTION and/or COGNITION problem, that are in turn creating more problems down the various lines of communication/interaction, right?

And if we think of physical illness, that's like, more towards the AUTONOMIC SYSTEMS or SENSATION side of things, right?

Oh, now I wanna draw a map. God speaking of self help books I could absolutely make a self help book outta this. Like obviously this is not literally true; it's like a way of thinking about how we've categorized things in health and why, and what that means when trying to communicate your health experiences to your healthcare provider in a way where you won't be misunderstood and can get better as quickly as possible.

And that's I think it.

Is that I want to get better so bad.

Not in a "depressed person in a hole wishing I knew where to find hope" way, but in a "I am so brimming with hope it's heartbreaking every time I get a reality check" way. And as you can imagine, the latter can result in a mood and demeanor that certainly would resemble (and maybe even become) depression. But in the latter depression is not the core cause. In the latter depression is a symptom.

Which is all to say I have thought about my mind and my body and the ribbons tying them together a lot. I have absolutely entertained the idea it's all in my head, and tried to do anything I could to address that if it was the case.

Because I want to get better. So I'm not just going to ignore a perfectly reasonable possible explanation. Sensation gets input from everyone, so maybe it IS something awry in Emotion or Cognition that I'm just only clocking when it gets to Sensation and back to Cognition again - creating sensations like fatigue, pain, and drowsiness, and impairing Cognition further.

But like, my mental health is pretty fine, actually. Like, I'm really good about it. You have never met a more emotionally indulgent and yet incredibly level headed bitch. I have more optimism than I have a right to given the preponderance of the evidence. Is some of that being held together by a couple slices of scotch tape and a sticky note that says "I'm sure it'll all work out :)" holding together, like, something that really shoulda used a hefty portion of a duct tape roll? Yeah probably that's why we don't look at it too long, let's move along on the tour.

But, like, as this bizarre ramble probably illustrates, I am more than willing to examine myself at length to determine if there aren't better ways to think about things or do things that wouldn't make my happier and more productive. I am clearly not lacking introspection or drive.

Which is finally REALLY all to say that on days like today, I may not be confident why I am feeling what I am feeling, but I am one hundred percent damn sure that no one else feeling it could be doing any better.

[justaratswriting]

Batfam and Mental Health

orOkay so I love Batman and all the things surrounding it. Like the idea of a random rich man who happens to be an orphan just suddenly adopting a ton of children is ridiculous, and thoroughly entertaining.

But I am also a big fan of psychology, and learning about the mind. So mental illness and related things are fascinating to me. 

I notice that like strangely there is very little stuff about the batfam having mental illnesses or dealing with psychology or therapy. Don’t get me wrong there is still a lot addressing these things, but still with the things the family experiences you would think it would be a lot more prevalent in the writing about them, and especially fan fiction about them.

Like I think showing mental health through  beloved characters would be really cool and could be a tool to destigmatize them. Like showing hero's with them would make really great representation, people could see them and think Oh I can still be a good person and helpful even if my mental disorder makes it hard and for things like depression or ADHD showing which misconceptions are harmful and don’t work. 

I can also see this in the physical aspect, like I wish a hero would have something like chronic pain or one of the many invisible illnesses. To give representation and show how pushing through the pain can shut a person down for days. 

The specific disorders I think would be really interesting of the top of my head is, depression, Anxiety, POTS, Fibromyalgia, Chronic pain, eating disorders, nerve damage, ADHD, Bipolar, OCD, Chronic fatigue, PTSD, c-PTSD, Autism, Elhers Danlos syndrome, And the one I really think would be interesting DID. 

Like fore depression, showing how hard it is to get out of bed. Not showing constantly being sad but showing how it can be numbing. Acknowledging that in a disorder like this logic doesn’t always win even if you are the most logical person to live. 

For anxiety showing how debilitating it can be. Looking into their minds to show the thought process, the mind fight itself and logic. Knowing their fears are unreasonable but not being able to shake the feeling. Show how for different people different things cause anxiety. 

POTS or Postural Orthostatic Tachycardia Syndrome, (super simply put it is a circulation disorder where upon standing up blood rushes to extremities and can cause all sorts of problems like fainting, pain in your feet, Dizziness, poor temperature regulation, etc. Also I am assuming people know what depression and anxiety is.) would be fascinating to me. Like having a hero that is constantly sitting down or biting down and pushing through the pain even a hero that has to slowly stand up. So in the middle of a battle being shoved down having to slowly stand up or risk fainting or vision completely blacking out for a while. Showing a hero who has learned to fight with no sight because of that very thing. 

Or Fibromyalgia (This one I am a little less educated about but from what I understand, it is a disorder characterized by muscle pain and tenderness usually with no known cause, so from what I understand it usually is diagnosed after a ton of other disorders are eliminated and the pain is still occurring, often also has affect on sleep and memory/mood.) Like showing a hero having a particularly hard patrol and having to take a couple days off and constantly going places or trying things to help with the pain. 

Or Chronic pain ( from what I understand the main difference between Fibromyalgia and Chronic pain is chronic pain has to do with the nerves and Fibromyalgia has to do with muscles, also Fibromyalgia has other thins to go with it like energy levels and mental functions so memory/mood.) Like a hero having constant pain even if they didn’t have a big fight, maybe showing them icing, heating, or taking pain meds and the rest of the family or team being super confused as to why. Before they know showing them freak out and worry that they went on a mission without telling anyone. Showing how it is a constant battle, that sometimes treatments will work and other times, for seemingly no reason they won’t. 

I would also like to see eating disorders portrayed by the bat family. Showing how it’s not always a conscious choice, sometimes it is more along the lines of choosing something else over eating. Showing how people can use it for control or to punish themselves. Letting there be a male example, reminding people that they can happen to anyone. Allowing people to have representation. Show a recovery, how it is not impossible for anyone but not down playing how hard it is. It is a true and hard fight, and show how it can sneak up on you and drag you back. Not just one easy recovery, that recovery is a choice. You have to want it but you also need help, it is a long hard process and accessibility is everything. Show a family member making them food, show them sometimes eating it and others not. Also don’t only show under eating show how people can’t stop themselves from eating. Having cabinets locked to keep people out, for their own safety. 

Or nerve damage, showing how years of their work and fighting can really mess someone up. Show someone suddenly losing all feeling or sensation in certain parts of their body or constant pain or even pinched nerves. Show how confusing it can be to not know what you are feeling. Show how weird it can be when you realize you are fine or that nothing is touching you or taking it in the opposite direction and not realizing you are hurt or someone is trying to be your attention. I would also love to see the batfam explain any of these injuries to the hero community or to the public. Maybe show the hero community really starting to look into mental and general health services. 

ADHD or also ADD, showing how people can use it but also showing how hard it can be to control and fight. How much it can impede focusing and show situations it can put people in. Show a hero forgetting a huge part of their plan and falling but because of some random information from a hyper focus they still save the day. 

Bipolar, showing the wild swings and how confusing it can be. Feeling like a different person, struggling with identity and their own decisions. Show them accidently pushing people away but also how hard they work to maintain family and friends that despite how unpredictable they can be their friends still stick around. Or if their friends can’t handle it show them peacefully and respectfully stepping out of their life. Show how hard that can be to except but that the future can end up better than you could ever hope. 

OCD is really one I wish we saw in the hero's. Show their routines and things they do. Show the thought process, like if I don’t properly put the dishes away in fourteen seconds the joker will escape arkham. Show how terrifying the thoughts can be, but show how detail oriented it can make people and the beautiful art and amazing work that they can do. Show a person putting them selves at risk to comply with their routine. Like ignoring injuries to write a report. Show them and family or friends working to change the routine. Show how hard it is the moments they want to turn back and continue and how much they want to stop but show them not giving up and making the differences they want. Show them accomplishing things, show their compulsions actually keeping them safe.

Or even chronic fatigue, Show the fight each morning. Them saving energy, the disconnect between how exhausted you are mentally vs. physically. Show a hero that 50% of the time physically is too exhausted to be in the field so they offer technical support. Show a hero crashing, suddenly just not having enough energy to finish patrol or even get home. So someone has to come pick them up. Show them getting stuck in a fight and how hard it can be to do anything much less a fight. 

Let the characters have PTSD or c-PTSD, show flashbacks and being stuck in your head. All of the bat family has lived through horrors please show it affecting them. Show how they get help how they work through it show what can happen and how bad it can get if it is unaddressed.  

Show them having autism and how it is just a different way of life that there is nothing inherently wrong with it and how the ignorance that surrounds it and similar disorders can hurt and affect people. Show how it can be simple things that can show it or affect it. Try and look at it from their perspective and what things happen that should not just because they way someone is. 

Elhers Danlos syndrome, show the pain, the misdiagnosis, the process, the fight. Show how disabilities like this and several others including ones I have mentioned can cause a person to need medical equipment such as wheelchairs and braces. Show how not everyone using a wheelchair can’t walk. Show how limiting it can be and the precautions you have to take but don’t make everything about how hard it can be. Show how using a Wheelchair while not ideal can open up so many opportunities. Show them actually being able to go on family vacations and amusement parks because they have a wheelchair. Show how important it is to have ramps and accommodations for similar things so people can participate and so people can actually go places they want. Always show how hard people with disabilities and such work. Show them trying to get treatment and trying new treatments show how it isn’t as simple as getting a knee brace or two. 

And finally coming to one that absolutely fascinates me, DID or Dissociative Identity Disorder formerly known as multiple personality disorder. But don’t do this one completely uneducated, it is already a very stigmatized disorder. Show how Alters communicate. Show how they all work together and that they were made so the body and mind could survive. Make full characters just put them in one body. Show the confusion once they find out, show them slowly realizing and learning signs and what happened to them. Show each of the Alters having different friends and maybe understanding and knowing the family different. Show the different reasons and setups systems can have. Show system responsibility and each Alter working on themselves and to make a life for the system. Show the roles Alters will take. Show the horrible process of fragmenting and what things can cause it but also show healing and people supporting and accepting systems. 

Overall showing good parts of all the struggles people can have but not ignoring how hard they can be or glorifying them to people who don’t understand. Showing misconceptions and how support can affect these disorders. And most important in my mind, giving hope and a future to look forward to for the people with these disorders.

[wild-stallions]

Hi, I’m Maddi! and WOAH! asking for help like this is very, very scary!

A few years ago I woke up and heard my collarbone snap— since that day my entire world changed.

Fast forward through a tonne of investigating and as of right now, I have diagnosed Osteoporosis, CVID (Common Variable Immunodeficiency), L & R Trochanteric Bursitis, and have developed Fibromyalgia as a result of so many fractures/nerve damage/inflammation.

There’s some other puzzle pieces like infertility and undiagnosed (seemingly idiopathic), disorders that are still being investigated; involving my eyes, brain, bone marrow and blood.

I genuinely couldn’t tell you the cumulative amount of time I have spent bedridden, in hospital (whether it be on ward or in ED), the amount of bones I have broken/fractured, or ambulance trips I have taken.

Thus far, I have been lucky enough to be supported by the government through the NDIS, and have a workplace (family) who are so kind, understanding, compassionate and flexible.

This has meant I’ve been able to live independently for years, and still feel somewhat like a 28 year old gal with the world at her fingertips.

However, since 2020 and with the world the way it is, I have reached the point where I need to swallow my pride *gulp* and ask for help.

With monthly medication expenses, specialist appointments, weekly GP appointments, various procedures, invasive biopsies, scans, infusions, injections, hydrotherapy, travel costs, and compensating for the time I need to take off work, I am struggling to maintain the independence that I need in order to keep functioning.

I routinely see a rheumatologist, pain specialist, pain psychologist, immunologist, haematologist/oncologist, neurologist and endocrinologist.

As grateful as I am for Medicare and our amazing healthcare system in Australia, unfortunately without private health cover… it adds up.

It’s been discussed that the next logical step in my journey will be genealogical testing, which I want to be financially prepared for.

SO, if you can spare a few dollars over the holiday period to help me prepare for what’s to come, or simply share my story around— I would be extremely grateful.

It’s so bizarre putting myself out there like this, especially after juggling it on my own for so long, but it’s well overdue.

It’s extremely challenging trying to balance life whilst living with an invisible illness and chronic (often debilitating) pain.

What I would give to be able to go out with friends with no physical repercussions, wear heels, or simply vacuum the house without my whole body hurting! Honestly, if it weren’t for you all (and my beautiful fur babies), I wouldn’t be here right now.

So I want to thank all of my family and friends for their unwavering support; my team of INCREDIBLE doctors, the staff at the Austin Hospital, Olivia Newton-John Cancer Centre, and the Alfred Hospital in Melbourne.

If you would like to reach out, please do! I’m happy to answer any questions you might have. And if you’re struggling, I am always here to talk, or simply listen.

All my love and gratitude,

Maddi x

P.S. If you have any ‘miracle cures’ or advice for me— I can assure you, I’ve already tried it.

[newhologram]

I've been doing some thinking and realizing just how far back this all goes. Those of you who know me and my family IRL may have a hard time believing the emotional abuse and gaslighting because whenever you've met them, they seemed fine. They may have even bragged about me to you which made you think that they thought very highly of me. They also may have neglected to inform you that I have been disabled by chronic illness the past 10 years (many of my other family members had no idea until they spoke to me personally. It's... really fucking weird? To just not tell anyone that your offspring is in bed all day in horrible pain and constantly at the doctor/ER?). Unfortunately this is also part of the gaslighting, putting on a persona of parental perfection so that no one believes me when I try to talk about it. Instead people, even within my family, make excuses for the abuse and say that I should just be grateful. Behind closed doors it's always been very different. In the event that me processing this in private spaces gets out to them (which WILL endanger me): This isn't about *~exposing~* or *~revenge~* or *~punishment~*, it's about putting the pieces together and saying, yeah, I'm right to finally put my foot down about the way I have been treated. This is my experience. This is my trauma. I'm finally claiming that after a lifetime of being told that these experiences and my pain around them are apparently "not real" (gaslighting). By talking about this, I am not victimizing myself, but empowering myself. Because none of this treatment was ever my fault. None of it was ever deserved. And none of this is to be blamed on my "response" to abuse. I hope that by talking about this I can paint a picture of the dynamic and inspire investigation into the health of your own family dynamics too. "But they're family" is literally what enables this kind of abuse to continue. And I'm done. My health and survival is more important than upholding a toxic family system. They're learning that the hard way, finally. I don't think my family members are bad people. I truly do love and care for them. They have some amazing qualities. They love animals and they've come a long way to now being LGBTQ+ allies even if they don't always use the right words. But they have a lot of flaws that most likely come from their own trauma... But these aren't just self-contained flaws. Because I am the one who will be undoing the damage for the rest of my life. I don't know if they will ever go to therapy themselves, but I certainly won't be waiting around for them to work on themselves if it means I'm going to continue to be mistreated and re-traumatized. - It's always been this way but things definitely got worse in my home when I became disabled (possibly bc it triggered insecurities in them?). Both parents ignored me to my face all my life. I'd say or ask something, and there'd be no response most of the time. If I said, "hey, I'm talking to you, that's rude" they would blow up at me about "WHAT. WHAT DO YOU WANT ME TO SAY. I HAVE THINGS ON MY MIND OKAY I HAVE MY OWN LIFE". This happened even when I was a literal child. I grew up believing that nothing I had to say was worth hearing and that if they ignored me that it was because I was unimportant and annoying. But if I ignore them or take too long to respond because I'm thinking, they scold me me about being rude, that they are my parents and I need to respect them. My emotions and pain have been invalidated since I was a child too. I would get picked up from afterschool care, or my bully's house, and of course I'd be crying from enduring a day of bullying. I would say, "I didn't do anything to them, it's not fair." And my dad's response was always, "WELL GUESS WHAT LIFE'S NOT FAIR. WAIT UNTIL YOU'RE AN ADULT IN THE REAL WORLD." He has continued to say this to me on a regular basis whenever I am struggling, either with work, friends, relationships, a death, or my chronic illnesses. I wonder why he has never considered my world to be real? Why is my reality not real to him? What

makes that even more painful is that I was still sent day after day to the school where I was bullied, to afterschool care with my bullies, and to my bullies' homes. No matter how much I was always crying when they picked me up, they just kept sending me back. And then a few of my dad's girlfriend's had children who bullied me too. I literally could never escape it. If it wasn't that, his response to me crying about something would be, "YOU HAVE NOTHING TO CRY ABOUT. YOU'RE LIVING THE LIFE OF LUXURY HERE, YOU DON'T PAY RENT! JUST WAIT UNTIL YOU'RE OUT THERE HAVING REAL PROBLEMS!" Again, he said this to me when I was a 24 year old who was suddenly in the span of a year so disabled that I could barely work. I was scared for my future, because I had taken the time to educate myself about my illnesses, and I knew that things were going to be hard for me. What I needed was support, not "tough love" and emotional invalidation. I was also scared of the situation I am in now. I was scared that I was going to be too sick to afford to move out and that by age 30 I would still be stuck at home with a parent who did not see my reality, my pain, as real. I am living that and it's not fun. Whenever I tried to talk to him about this invalidation, it just turned into a fight, because he refuses to admit the things that he said, and says things like "That's a You Problem" which he has said since I was a child in response to him hurting my feelings. I have always thought it was worth the effort to communicate to my loved ones this sort of issue, because that's what I was taught at school. If there's an issue, you talk about it. But my family doesn't believe that I guess. - When I first got sick, I was throwing up a lot. It had built up over several years since I was 19 but then after I was officially diagnosed with my Big 4 (colitis/fibro/ME/narcolepsy) I started having really dangerous vomiting attacks. The first attack I had lasted 6 days. I lost 12lbs. I overheard my dad complaining on the phone to a friend that I was keeping him up all night throwing up. I felt so bad for bothering him, I had learned to value his comfort over mine. But after the third day of nonstop vomiting, I told my dad I needed to go to the ER, that something was wrong. He sighed and rolled his eyes and said I didn't need to go. He was so annoyed with me for being sick. I was completely pale. I hadn't eaten anything. I could barely keep water down. I argued but he wouldn't listen. I went back to throwing up, at this point just dry-heaving. A while later I said, "I'm taking myself to the ER." I grabbed my car keys and my dad stopped me. He said, "That's ridiculous, you aren't driving yourself to the ER, I'll do it." But he still wouldn't take me for some reason. I don't know if he just didn't want to pay the copay or what. But I was literally trapped. I tried to fight it and said, "If you're going to take me, then take me. If not, let me take myself." I kept throwing up for three more days before he finally agreed to take me. The ER was packed so I ended up going to urgent care, where the nurse scolded me. She said I really should've gone to the ER after the third day of vomiting. She said that if I had gone a 7th day I could have collapsed. I didn't know how to tell her that I had tried. She asked where my family was and I said my dad had to go to work so he had just dropped me off. She had tears in her eyes and she held my hand. She said, "he should be here with you." THAT is how sick I was. That year, I went to the ER three more times. Each time I would be sobbing and ashamed of myself just for bothering my dad and for him having to pay the copay since I was too sick to earn the money myself. Again, that's how little I had learned to value myself and my health. By my birthday that year, I was suicidal from this shame. A few months later, in the new year, I started having vomiting attacks again. My dad stood over me while I was hunched over the toilet gagging and he said something I will never be able to forget, "You need to snap out of it

because I can't go through this again." He was the victim of my illness. He was the victim of my pain. This year was when my dad told me that he and his gf had been "talking" and that they had decided it was "time for me to be independent". He said they'd even help me find an apartment. I cried and said, "Dad, I'm sick. I've been so sick the past year. How am I supposed to afford even splitting rent with a roommate when I'm in bed in a neckbrace all day long?" and his response was, "But your dad needs his bachelor pad." I couldn't even identify what I was feeling. I was so shocked. Did he really think having the apartment to himself so he could have girls over was more important? But he was always telling me that I was the most important person in his life. I was so confused.

He gave me a time frame to move out and I was terrified. I thought my life was over. But most of all, I thought, "it's not fair to my dad that I'm sick." I thought so little of myself and my pain because that is what I learned as a kid. I blamed myself for not being "strong enough" to power through these debilitating illnesses. I blamed myself for my dad's money troubles. I literally could not live with myself knowing that my dad had to support me. I was so ashamed that I learned to vomit quietly so that he wouldn't notice. I was in a constant state of suicidality for several years after this. And it's no wonder, because year after year my dad has barged into my room to harass me about "it's time to be a Real Adult! It's time for you to Contribute to the household! You need to Make Money! I'm HEMORRHAGING money supporting you! I'm having to use my savings!" and because I was too sick to do this, I felt like a complete failure who did not deserve to live. I was self-harming constantly because I hated myself for "doing this" to my father. He had convinced me that I was the villain. I would start freaking out about money, forcing myself to work even if it meant vomiting literally on set (and almost being sent home bc of it, but I insisted I was fine to work). But I still couldn't make enough to afford my medical expenses. So I would shame-spiral and be suicidal again and then suddenly the story would change. My dad did a complete 180 and said, "Why are you even worried about money? We're doing fine. Even if I didn't have to support you, it wouldn't make that big of a difference in the money that I spend on this household. Don't worry about it." And then as soon as bills were due, he was back to telling me that I needed to make money. Back to saying we spent too much money on food despite me not eating that much. Back to refusing to try shopping somewhere cheaper when I suggested ways to save money. When I brought this up to my therapist back then, she said, "He's giving you mixed messages. Maybe you should bring this up to him so he realizes he's doing it." But when I did bring it up, of course my dad denied doing this and called me ungrateful even as I worked two jobs. When I eventually got a third job (fucking up my health more) to pay off my medical debt, my dad patted my back and told me how proud he was. When I told my therapist that he denied it, she suggested I bring him in so she could help us communicate. When I asked him to come with me to therapy, he got angry and said, "I am NOT going to therapy with you, that is ridiculous." But even with those 3 jobs it still wasn't enough and I was constantly being pulled between "YOU HAVE TO MAKE MONEY RIGHT NOW END OF THE WORLD" and "uhh why are you even worried about money, you need to work your mindset..." When bugged about money I would ask, "What else do you want me to do? I'm working 3 jobs. I'm not hiding money from you. I'm sending you everything that is leftover after I pay my own bills. I've even been buying a lot of my own food, I've been living off ramen and cans of ravioli." And he never had an answer except "just make more money." -- Now to the dynamic I'm currently living in. My dad moved his gf and her dog in without talking to me about it to see if it was going to impact my health. She was only supposed to stay here for maybe 4-5 days while she figured out a new home situation. But when I asked my dad about it in the days leading up to her arrival, suddenly the answer was "oh, she's staying indefinitely." I had no say in it. But we had a talk about what I needed to make this work. I said to my dad that the most important thing was that I have some scheduled quiet time. If I'm recording content or editing audio, I'm going to need quiet that morning so I can get my work done. If I'm resting, I need there to not be shouting or slamming doors happening in the house. He assured me that this was fine and that it'd all be easy for the three of us. The first weekend she was moved in, I let my dad know that I was editing audio that morning and needed

some quiet. He was cheerful and said, "No problem!" I thought wow, this is different. This is nice! This is going to be great for my productivity and health. As soon as I started editing, his gf was blasting music in the kitchen (right next to my room) and they were both laughing and talking loudly just a few steps away from my door. I thought, okay, we talked about this. But I'll just power through. When I was done, I went to my dad and said in a calm manner, "Hey, so this morning I let you know ahead of time that I was editing audio but there was still a ton of music and stuff in the kitchen, so it made it take a lot longer for me." His eyes immediately went dark. He put on an angry parent voice and said, "Okay, I am about to pop. I have enough going on without worrying about making too much noise for you." I said, calmly still, "We talked about this, though, and you assured me it wasn't a problem that I needed this quiet time for editing. So I'm not sure what to do. I'm just letting you know that there was still loud music right next to my room even though we had talked about it." He responded, "Then you need to be more specific because I don't know what you're doing in there." I corrected, "But I told you this morning that I was going to be editing audio and you said it was no problem to have some quiet in the kitchen while I did so." He got more aggressive, "No, you need to be more specific." Again, "I was specific. I told you the time frame that I was going to be editing audio in. You said you understood. I don't know what else to do to fix this other than by openly communicating to you about it." I started crying because--I mean, uhh?? This is gaslighting. I couldn't believe that mere hours after I had specifically told my dad that I was editing audio and that he had assured me it was no problem to have some quiet, that he was accusing me of not telling him what I needed, and that he had not agreed to it or something. Like wtf. He got nastier and blamed me for his stress. But me crying triggered his guilt so he tried to soothe himself by hugging me like he does and I pulled away. I tried to emphasize to him that I'm not just making content for fun. I'm literally trying to make money and contribute to the household like he has told me I need to do for the past 8 years. And when he disrupts my editing process, it just makes it take longer, and it makes it harder for me to earn extra money. His gf was also super rude to me when I tried to be friendly and have a conversation with her. I was telling her about how great it felt to have my sister initiate a conversation about my gender identity and she interrupted me (like she does constantly) to say, "YOU KNOW YOUR SISTER DOESN'T ACTUALLY GIVE A SHIT, RIGHT?" (wtf...) After this, I didn't speak to them for three days. I was feeling the urge to self-harm that whole weekend and all I could do was stay in bed crying after that. I knew if I spoke to them I would just get triggered so I was protecting myself. My dad felt guilty and tried to talk to me in my room. I tried to explain how triggering this whole situation is for me and he said he would do anything to make it easier for me. I had told him what I needed but that he had gaslighted me about it. - This next and last part is going to illustrate the priorities in this household. A few years ago, I started having problems with hives. I spent almost a whole year having very painful breakouts all over my body. It kept me up all night and caused me so much discomfort during the day. I kept telling my dad about it (no response, or annoyed responses), I went to the doctor several times about it (useless ointments), and suffered month after month. I tried so many things, I thought maybe it was bugs, spiders, etc. My asthma was also acting up and I remembered that an ex-neighbor had been suspicious of mold because of their health issues getting better the second they moved out. They had told me back then that we should test for mold. I brought it up to my dad that I had been suffering from this for

long enough and that we should do something about it (mold also makes fibromyalgia and ME way worse). He angrily snapped, "What do you want me to do about it?" I suggested we ask the landlord to mold test the apartment. He refused bc he doesn't like to bother the landlord. I said that I would just order a mold kit myself and he said, "No, let me do it, I'll pick the right one." But he wouldn't even after I kept reminding him. Even after I sent him links to mold kits that we could order. After I got rid of my mattress, my hives got a lot better but I still have issues every now and then. For years I have just lived with this because I couldn't get him to even care about the fact that I was spotted with these big pink hives. When his gf moved in, we had a random rainy day, which seems to have activated the mold. His gf got one tiny little hive and the sniffles. She said to him once, "Hey, I think you have mold in this house." Want to guess what happened after that? You're right. He immediately ordered several mold test kits. I said to my therapist, "How am I supposed to feel about that? Is it really unreasonable, am I really in the wrong to feel hurt by that?" My therapist said, "I mean, I would feel completely invalidated and like I didn't matter." This isn't the first time empathy has been withheld from me obviously (above examples during my flare ups), but sometimes even when it's right in front of him he just can't bring himself to care for some reason. One time a big piece of glass was in my thumb. I said, "Ahhh, glass, help! Glass!" He was eating snacks in the kitchen and just glanced at me, didn't move or say anything. I realized he wasn't going to help, so shaking and bleeding, I managed to pull the glass out with tweezers very painfully. It bled so much and I stood over the sink trying to stop it. My dad just kept eating his snacks, not asking if I was okay or anything, he didn't even look at me. After 5 minutes I still couldn't get the blood to stop and asked my dad if he could help, maybe get me some gauze. He put food in his mouth and sighed, "Just put pressure on it" and walked away. It feels like he's just disgusted with me. I know that he does love me and that he's trying the best he can with all of his mental/emotional/personality flaws but he thinks that just because he puts a roof over my head that he can treat me however he wants and not work on his issues, that it's my fault for being hurt. He thinks that his issues are all on me to learn to endure and it's not right. I know that he resents me for getting in the way of him having a relationship because that's the only message I have gotten since childhood, with every woman he's brought into my home. But in the end his relationships always fall apart because the woman ends up realizing, and stating to him, that he is "emotionally absent". And every time, I comfort my dad through the break up. When he has tried to blame his ex I said once to him that therapy can really help him with his emotional issues and relationships. But he refuses, so. That's on him. But I refuse to believe that I am in the wrong here for saying enough is enough. But he's going to keep trying to make me believe that the problem is just me and my feelings, not his behavior. Nope. Boundary is up. I just have to keep to myself and do what I need to do to stay safe until I can move out. Because I guarantee you he's going to realize he doesn't get enough validation from his gf and then come running back to me as always and then be angry that I'm still holding my boundary strong. I know that this will hurt less as I get distance from it, but I don't like the idea of my pain being my fault when I grew up with this toxic stuff. I'm working so hard to make it hurt less but I can't heal if it keeps happening, so all I can do is back away from what is hurting me instead of being surprised when I'm hurt again. THAT is on me 100%. Hopefully he doesn't grab my desk and slam it against the wall again like in 2014 when I first tried to set this boundary. And of course when he

"apologized" he accused me of "punishing him" by not spending time with him. Jee-zus, dude. Get therapy. I can't be the only one in this family bearing this weight and working on my shit.