#there are many times i can remember where my chronic pain stopped me from doing things i love

[kunaigirl]

Happy Disability Pride and awareness month! Let's talk about Epilepsy!

Hi there! I got tired of seeing my condition (that impacts my literal every day life) being left out or forgotten about during discussions about disabilities, so I made my own post about it! Let's go!

First Off! What the heck is epilepsy? Epilepsy is the fourth most common neurological disorder in the world, and it's a chronic medical condition. Epilepsy is a brain disorder that causes recurring, frequent, triggered, and unprovoked seizures to occur.

The official Epilepsy Foundation describes seizures as follows: "Seizures are sudden surges of abnormal and excessive electrical activity in your brain, and can affect how you appear or act. Where and how the seizure presents itself can have profound effects...Seizures involve sudden, temporary, bursts of electrical activity in the brain that change or disrupt the way messages are sent between brain cells. These electrical bursts can cause involuntary changes in body movement or function, sensation, behavior or awareness." (Source link)

Sounds like a lot of fun right? This is our life. Even with medication, we can be VERY limited to what can be safe for us. Seizure medications are NOT a cure, they only exist (at least as of now) as a tool to help have your seizures less often, or be triggered less intensely. Even on medication, seizures can still happen.

If you have epilepsy as a child like I did, it impacts your entire growing and developing experience. I spent MANY times as a child in and out of hospitals, neurologist and specialist offices, an getting so many EEG tests done. The pain of scrubbing the glue out of your hair for DAYS is horrible.

At a young age my seizures were so frequent and serious, it impacted my brain's ability to retain information. I had to re-learn the names of things at age 8 and 9. I had to re-learn HOW TO READ at age 10. I had to be home schooled because the public school system of my state at the time refused to work with me. I have VERY distinct and vivid memories of crying over my little baby ABC's book that I needed as a 4th and 5th grader. I knew I should've known this by this age. I knew that at one point I already did, and it was TAKEN FROM ME.

As an adult, I'M NOT ALLOWED TO DRIVE A CAR. And I can NEVER go to see a movie in theaters or go to see concerts or live music. There are entire TV shows I don't get to see. I can't go to clubs, arcades, dances, or raves. I miss out on A LOT of fun things. I always do, and I'm WELL AWARE of the fun I'm missing out on. The social, casual, and fun life experiences I'll never get to have. That WE'LL never get to have. And oh yeah! Seizures can KILL SOME OF US. Yep.

And the list goes on, and every person with epilepsy experiences it differently. There are multiple different types of seizures you can have, they're NOT always convulsing on the floor. For example, I have complex-partial-myoclonic-seizures. Meaning my muscles DO twitch when I have seizures, but I'm not always completely unconscious and sometimes I'm even able to stay sitting up. However, I'm still very "off" and can't focus or remember much for a good while after the fact. I can't talk or communicate during one, even with my slight bit of consciousness.

My experiences are not universal, I just wanted to talk about it and bring it up. It helps to talk about it even a little bit. Here's more about different kinds of seizures. Here's more about common seizure triggers. Here's more about CORRECT seizure first aid. And here's more general information/resources.

Please stop leaving us out of disability awareness. Please stop ignoring us or saying we're "not really disabled" or anything else like that. Please. Why does it always feel like the only people who care about epilepsy, are people WITH epilepsy? We're so tired of being ignored by others who don't have our condition.

If you're an epileptic person reading this, I see you. I love you. You're so strong, we all are. I believe in you, I believe in us. We're so much stronger than we get credit for, and it's going to be ok. Your anger and frustration are valid. Your emotions and struggles are real. You're valid, and I see you. Hang in there, we got this.

#epilepsy #epilepsy awareness #actually epileptic #disability pride month #disability awareness month #disability awareness #ok to reblog #disability pride

[kmackatie]

shadowgast fic rec list: the modern au edition - part one

This has been a long time coming, and hopefully the start of a few, but I have been intending to make some fic rec lists for a while. I am time-poor and generally bad at remembering to bookmark fics, but I figured I shouldn't let that stop me.

I have a love for modern au's, I write many of them, and I often see arguments against them when the source material is fantasy based for a number of reasons. But, I wanted to shine a light on some out there that tickle that box for me of being delightful.

Listed below the cut are a bunch of fics I have enjoyed, in no particular order and of varying lengths. I will of course forget some, but I hope to do some more lists in the future as I have more tabs open than I can reasonably fit in a list.

Fundamental Forces Other Than Gravity by mllekurtz (TheKnittingJedi)/@mllekurtz (1/1 chapters, 40,676 words, E, no warnings)

- A shadowgast college au with great characterisation and weaving of the Nein throughout. This one has chronic pain Essek, and I love how it is handled. As a note, Essek is briefly one of Caleb's professors, however, there is little power imbalance between them.

the fire kept closest (burns most of all) by mousecookie/@ariadne-mouse (3/3 chapters, 21,822 words, M, warnings: MCD)

- The fic that created the vocaleb tag. Essek is scientist on a research team studying a volcano, for which a tragic accident occurred years prior. It's told in a series of present and past, and the slow build of the relationships throughout the fic are gorgeous. For those eyeing the MCD warning, know that it is also tagged with 'angst with a happy ending'.

I've been lost before (and I'm lost again, I guess) by toneofjoy/@fireryn (21/21 chapters, 165,080 words, E, no warnings)

- The boys are rock climbers in this one. I know, it sounds odd, but trust me and read this. It has incredible characterisation and conversations about sexuality and gender (I hold the cafe scene in my hands so gently), as well as some wonderful sexual tension that builds until it bursts. This fic also got me into recreational rock climbing and I owe the author for it big time. As a note, Essek is Caleb's coach in this fic and this is a plot point for the background of their developing relationship.

starting with your heart (bright heart) by 2manyboys/@cluelessheroes (1/1 chapters, 9,914 words, E, no warnings)

- This has the sentence "Have you been taking four legged showers with Essek Thelyss?” in the summary and it has lived rent-free in my head ever since. Modern-wth-magic university au where they are both students with some lovely build-up of sexual tension between them. Hot smut to go along with it.

disputable presumptions by hanap/@callingvoicemail (3/? chapters, 9,606 words, E, no warnings)

- The corporate lawyer au of my dreams where they are friends with benefits and hiding it from the rest of the Nein. This has a delightful background of plot, along with ambiguous not!wizards hiding their true feelings behind an air of casualness, and snappy writing that keeps you reading.

Inside Edge, 3 Turn, and Closed Hold by MithrilWren/@mithrilwren (3/? works, 16,060 combined words, T/G/M respectively, no warnings)

- The shadowgast figure skating au I didn't know I needed until I read it. I've reread this one so many times and keep coming back to the characterisation and the way the story is slowly told across all three fics. There's a richness of the world behind what we see, and I adore coach!Beau in this one. Another with chronic pain Essek, and generally a careful understanding of the risks that go into the sport.

Labor of Love by OMGitsgreen (6/6 chapters, 43,331 words, M, warnings: CNTW)

- Bakery au. It's a classic, and it's done so well here. This is one of the earliest fics I remember reading, and it's a warm hug on a cold day that is great for when you're wanting something nice.

fermata by canyon_wizard/@canyon-wizard (8/8 chapters, 65,403 words, E, no warnings)

- A classical music au (there really needs to be more of these, please) where they are both piano students. The focus of this one is less the music world and more the character dynamics, and they are incredibly well done. The smut is hot, there is delightful miscommunication, and tense dynamics (ha) throughout.

(your face in my hands is) everything good I need by mllekurtz (TheKnittingJedi)/@mllekurtz (8/8 chapters, 25,884 words, M, no warnings)

- Professor au where they meet at a conference, Caleb a professor of modern history and Essek an expert in Latin. This fic has everything--wizards being nerds in every universe, first kisses, developing feelings, long distance relationship, emotional stakes, and dramatic declarations of love. I adore Mlle's writing (it really should not be a surprise at this point) as they have a way of capturing emotions and turning them into stunning pieces of prose. This one is also a love letter to Paris and Berlin, and please give it a read!

#shadowgast #critical role #critical role fanfic #essek thelyss #caleb widogast #the mighty nein #fic rec #fic rec list: modern au #my writing #I have definitely left of fics but I am intending to make a second list eventually #authors if you wish to be removed or untagged please let me know #cr: fanfic

[that-nerd-who-writes-fanfiction]

Something I wrote yesterday for a chronic pain werewolf Merlin fic sitting in one of my doom folders

(I’ve been through and checked spellings a bit but please don’t be too harsh.)

—

Arthur hadn’t said anything yet, he realised.

“You’ve been through so much,” the prince murmured, astonished. His voice sounded so soft and genuine and reassuring. Merlin had heard that same voice when he spoke to people in the aftermath of attacks. “I promise you, I’m going to do everything to make sure you never have to deal with anything like that again.”

Merlin shook his head again, “You can’t promise that. I’m a werewolf in Camelot.”

“It won’t be like this forever,” Arthur tells him and Merlin hangs onto it like a prayer. A breath of destiny and hope for the future where tomorrow won’t taste of dread and ash from pyres.

Merlin doesn’t know how he’s supposed to respond to it, so instead he turns his hand over and holds onto Arthur. The promise seems so tangible here, in his room after the most terrifying morning he’d ever experienced, second only to waking up after being bitten or waiting to transform the first time after.

“Why did you come to Camelot?” Arthur asked quietly.

Merlin huffed, “Will.” His eyes stung. For all he loved his friend, Will had almost gotten him killed so many times. “He got drunk while he was visiting the capital to petition Cenred to help our supplies over winter, Cenred told him no and he said his angry werewolf friend would rip them all to pieces for being complicit in tyranny. A week later, we had knights searching the village. It was either finding myself on a pyre for sure or taking my chances. So I took my chances.”

“But why Camelot of all places?” Arthur asked, his hands were still cradling Merlin’s, thumbs tracing the callous scars Merlin had collected over his lifetime.

Merlin shrugged, “I kept getting hurt. Badly. Then I woke up with this,” he drew one of his hands back and traced a scar on his neck, jagged lines and raised pale silvery skin, usually covered by his neckerchief. Arthur’s eyes followed the movement, then tore away to look at Merlin’s face. “I thought I was dead for sure, I managed to find a patch of yarrow to slow the bleeding and I tore my shirt for bandages, then healed what I could remember, but it wasn’t safe anymore. She sent me to Camelot because Gaius already knew, she hoped he could teach me how to be a physician and take care of me until I figured it out myself. I can set bones and dislocations, stop bleeding, stitch wounds, I’m learning, but it’s… still scary.” He confessed, stomach twisting.

He felt a bitter sense of grief creep up on him. The life he could’ve had if he wasn’t a monster.

“I’ll take care of you, too.” Arthur whispered like a vow, breaking Merlin free of a spiral before he’d even taken the first step. “I know sorry won’t make anything better so I won’t say that,” his hand lifted and traced the scar at Merlin’s neck, then Arthur tenderly cupped his jaw, thumb rubbing over what felt like a faint bruise on his cheekbone. Their eyes met, and it felt like sparks attempting to fly between them. Arthur shook his head, looking away and taking a breath, then said “I was never good at words, but I’m going to prove that things can be better. And hopefully by then, I’ll have found the right words to tell you you’re too important to me to ever lose you to this. Hopefully by then I’ll be able to tell you that as long as I draw breath, you’re never going to go through anything alone. And if I haven’t found the words, then I’ll prove it in my actions.”

Arthur was looking at him again, holding his hands and cupping his cheek, eyes looking deep into Merlin’s soul like he could uncover every detail or insecurity or fear and detach it from the tentative thing he hesitantly labelled hope. Merlin leaned forward, closing his eyes against the hot tears behind his eyes and pressed his forehead to Arthur’s, breathing him in.

Arthur’s hand never came away from his face, gently caressing the bruised skin. Merlin’s back was red hot under the uncomfortable fabric of his oldest and softest tunic. Leaning forward as he was did him no favours, but he refused to pull away. Refused to lose this because of the wolf like so many other parts of his life.

—

I hate that the first four chapters of this are crap cos this bit could actually be halfway decent with a few edits.

Anyway

#bbc merlin #merlin #fanfic #unfinished #merlin fanfic #merlin emrys #merthur #arthur pendragon #hurt merlin #werewolf merlin #hurt/comfort #soft arthur pendragon #i still can’t write without it getting angsty apparently #light angst #merlin bbc #i’m bad at tagging #fic writer #i need sleep

[cookinguptales]

frank discussion of gynecological issues and frustrations with OBGYNs (especially re: chronic illness) under the cut, but I guess also potentially useful information for people who want to hear about it

so... some of you might remember when I was going to OGBYNs a little while ago. I have endometriosis and PMDD diagnoses, so going to OBGYNs isn't exactly unusual for me, but I ended up going to see more than I usually do.

this was largely because the hormonal therapy that I was taking for those disorders was starting to fail and I was bleeding a lot. like... for weeks at a time over a period of months. I had to deal with some... frustrating OBGYN advice in this time (such as the rage-inducing "well, women have to bleed") but I also discovered that like... I mean, I think I always knew that I had more vaginal pain than other people I know, but a lot of things hurt me so I just kind of... ignored it?

but they tried to put me on the nuva ring for a little while during this period and my body just... straight-up rejected it. it hurt like a bitch to put in, it kept coming out, I could feel it in there and it hurt, etc.

I ended up comparing notes with some other people I know and realized that my problems with insertion were probably more severe than I'd thought. like, it is not unusual for me to cry during pap smears and have cramping for days afterward. I cannot use tampons without massive pain. your body is not really supposed to physically expel something like a nuva ring several times a day. tmi I guess but I have not found penetration of any kind pleasant.

so I talked to... I want to say four or five different OBGYNs in this period, and none of them gave me a real reason for this. the prevailing attitude was mostly "oh yeah, that happens sometimes. lmao."

the best I could get was a diagnosis of "vaginismus" on my chart, and when I pressed for more information, they basically told me it was a psychological thing where your body is afraid of penetration so it clenches up and won't unclench. they literally grilled me on my history of sexual abuse to see if they could find the source of my dick phobia.

now... not to get too into it, but I do have a history of CSA -- but my pain problems predate it. I got my period relatively early and I've never been able to use tampons or anything like them. every time I've tried has ended in literal tears. again, cramping pain for days, even after the period itself has stopped.

so I get the dick phobia diagnosis from two different doctors, but one of them says she can do a transvaginal ultrasound if I'm really worried. we do this and it is uh. excruciating, honestly. thank god it was in California and they let me get high as a kite.

in the end, they can't find anything "physically" wrong with why I'm in pain and they send me on my way, dick phobia dx in hand.

today. today. YEARS later. I am googling tips on how to try a menstrual cup if you have vaginismus (prep for the trip abroad; I don't like Japanese pads) and I see someone saying "oh, I'm glad that treatment worked for you, my problems are because of ehlers-danlos syndrome."

you know, one of the chronic illnesses I have and one that I divulged to every OBGYN I saw.

what.

paging Dr. Google!!!

I come to find out that folks that have EDS, because of their connective tissue issues and extremely brittle skin, sometimes deal with extreme gynecological pain. it's partially pelvic floor issues, partially the fact that the skin in your vagina is breaking.

so all those times that I said "it feels like it's cutting me" or "it feels like knives" were probably because it was fucking cutting me. all those times I said I felt scraped raw for days was probably because abrasions take a long time to heal when you have EDS.

I cannot believe. I cannot believe. that I went into so many different OBGYNs who told me that my pain issues were because I had a psychological fear of dicks and when I told them I was a lesbian were like "oh well then problem solved" when actually my body was physically tearing. I had even seen blood sometimes and it had always been dismissed as spotting.

the anger I feel rn is indescribable, tbh. I never bought that my problems were all in my head (probably because doctors used that line on me so often when I was a kid and getting other chronic illnesses diagnosed) but the fact that gynecological health science is still so fucking awful that we shrug off pain that is the symptom of dangerous chronic illnesses as "well that happens sometimes" or "have you considered that maybe you're afraid of sex?"

I JUST

this reminds me of when I had to find out from a fucking tumblr post that vaginal secretions are made from blood rather than glands, so if you have bad blood pressure/flow it'll often cause itchiness/dryness/pain. bad blood flow like... idk... maybe POTS.

so again, it was actually one of my known chronic illnesses causing gynecological issues, not any of the other bullshit reasons doctors were giving me, like age or stress.

I hate that I'm fucking 33 years old and I still have to learn stuff like this from google searches. I still don't know how my shitty body works, and it's largely because of stuff like this. what the fuck. I'm so mad. why do doctors still treat vaginas like a fucking scary mystery?

I'm well aware that Dr. Google doesn't always know what the fuck it's talking about, but apparently neither do my doctors! which is why, yet again, I'm up all night reading medical journals in the vain attempt to figure out how to actually live my life!

ugh!!!

#also the idea that vaginal pain only matters bc of sex and potentially deadly gynecological issues only matter bc of fertility #like your organs are only useful for sex or babies #and just not wanting to fucking hurt in daily life doesn't actually matter #makes me feel like my body is only useful when it can be used by others #hate that! #cw: #gynecology #ehlers danlos syndrome #postural orthostatic tachycardia syndrome #ask to tag ig

[tetsunabouquet]

Hello again and sorry if i ask you so much 💞😖can i request GoM + Imayoshi headcannons to how they would react to their partner with asthma having a respiratory attack on the court while practicing with the team and they would be scared not knowing that the reader suffered from asthma, I have been kicked from several teams due to this already Either because they discriminate against me or they don't see me capable and many times I hide my illness due to criticism :(

A/N: Baby, I want requests! It's okay to ask, that's why my askbox is open ;). Trust me, I get the drama. I was born with GERD, which is an chronic illness that can also cause the development of other illnesses. Thanks to it, I developped IBS (the radiology appointment I mentioned at the start of the summer was due to that) and you can also develop asthma from it. I actually did became more sensitive to things like fumes and smoking people due to it, so asthma is probably next on my comorbidity bingo card.

When I was a kid, my teachers would always treat me like I was over-exaggerating during P.E and I'll never forget the time when I was like 9, I wasn't feeling too great and a ball was thrown with extreme intensity into my chest by this upperclassmen in a game of dodgeball. Instinctively, I ran to the shower to puke it out, and my teacher's response was to get back in the game and to stop making such a fuss. So I had to, and I remember not trying to burst into tears for the rest of the game. I ended up developping a hatred for working out, and that's the reason I ended up developping a shoulder injury when I finally dared to follow my dreams and sign up for acrobatic classes. Because I exercised less then the other girls outside of our classes which was a shame as I did have talent actually. If only my teachers had taken me seriously on the moments I was too sick to exercise, I wouldn't have been skipping P.E by the time I hit my puberty.

So trust me, I get how painful this topic can be. Because basketball is a single sex sport, I'll be writing this male coded.

Akashi

-Him. Him not knowing his s/o's chronic illness? Not happening. This boy has only been pretending not to know because he's waiting for the day that you'll open up about it yourself. -When the attack happens, this boy's thinking is going at the speed of light. -He does everything according to the book, knowing how to help you. -He's a perfect gentleman throughout the event. -Your coach knows better then to reprimand you or to kick you off the team, feeling Akashi's intense aura even from that distance. -Everyone is too scared to even crack a ligh-hearted joke about it to you in the locker room, they're too scared Akashi will hire hoodlums to set their homes afire.

Midorima

-He actually also secretly knows. This boy might be dense about other people's social lives, he's not that way about his s/o. He cares so deeply about you, he wants to know everything about you. But he always plays dumb because he doesn't wants to be exposed as your secret stalker. -When the attack happens, this future doctor knows exactly what to do. -He's not simply good at knowing what to do, oh no, this is the one area where he beats Akashi. -Midorima even carries around a small pouch in his schoolbag that contains various tea blends that he read work wonderful after a respiratory attack. After you've finished up in the locker room after practise, this boy will start preparing some iced tea with the flavor you picked before you can blink. -You're not the one receiving criticism, or the butt of the joke. Midorima, and his secret nursing pouch is. -Shutoku's coach is a bit worried about you, but considering Midorima is less selfish around you, he's willing to forget this happened as he can recognize you improve the team.

Murasakibara

-This guy, and a medical emergency? Oh, it's hopeless. -First he stands around, just gawking at the scene. -Then he fumbles around, wondering what to do. Himuro is honestly the one directing his actions with instructions. -Coach Araki might be a strong willed bad-ass, but I bet she can have a motherly side to her, so she's worried but supportive of you. After this, she developped a bit of a soft spot that depending on the type of person you are might be a bit annoying, but you understand it's coming from a good place so you shrug her off with a smile.

Kise

-Similar to Murasakibara, but for a different reason. -Like, first you have a short pause where he gawks at you, and then he shoots into panic mode. Kise is trying to be supportive by hyperventilating. -The entire team has to pause the game to help you and get Kise to calm down. -Kise won't calm down until you have recovered and waved your hands in his face telling him to shut up, to which he responses with kissing you. -The coach refrains from making any criticizing comment towards you, fearing another Kise tantrum but he does make the mental notes to be more strict when he was seeing signs of an attack coming up.

Aomine

-This guy is known for not being so sensitive about these things, and thus I think he would have the worst reaction out of everyone. -For one, it needs time with this fucker to sink in that it's serious. -It takes Momoi rushing to you and checking up on you on the edge of a panic attack for Aomine to notice you. -He tries to help, but he's incredibly clumsy about it in a cute way though. -The coach lets this incident go by, I mean, this asshole just ignores Aomine and potentially Sakurai's mental health issues, so I can imagine him to just downright ignore a player's physical health issues as well.

Imayoshi

-Honestly terrified. -But he does manage to keep a cool head and not to go straight into panic zone. -Doesn't knows what the fuck to do but he's willing to learn. -He's very caring when you're trying to recover and practically never stops with petting your shoulder. -Considering he's on the same team as Aomine, the coach's reaction will still be the same. He doesn't gives a fuck about it.

#knb #kuroko's basketball #akashi #akashi seijuro #knb x reader #kise #midorima #midorima shintaro #kise ryota #imayoshi #imayoshi shoichi #murasakibara #murasakibara atsushi #aomine #aomine daiki #asthma reader

[longsleeveleper]

Can’t put into words what finding Nurgle meant to me

Not long after Halloween I got chronically sick and was confined to my room with naught but my computer to keep me company. During that time I fell into Warhammer 40k via a let’s play of Dark Crusade and as a Warcraft 3 kid oh man love at first sight. I’d fall in love with fantasy later but that’s another story.

The funny thing is chaos isn’t my favorite faction, though it is one of them. My favorite faction is Orks. And the Death Guard aren’t my favorite chaos warband, it’s the Night Lords (yes yes edgelord I’m aware it’s what I’m here for). So I don’t really identify with Nurgle on a tribal level, I don’t love him because my favorite character or faction is Nurgle. I identify with Nurgle on a philosophical level, because of the value they had to me metaphysically.

Now let me clarify, I don’t want everyone to die of super-mega-pneumonia. Quite the opposite I want nobody to ever be sick because I now know for an absolute fact being sick SUCKS. But, I am sick, and I have been told I will be sick forever. This is where the value of Nurgle to me enters the picture.

Nurgle and Nurglite worshippers are the first time I can recall truly see people with diseases being represented with strength. It definitely want the first time such a thing was presented to me, but Nurgle is such a strong and repeated example of it that it I couldn’t ignore it. Because illness is strength for those who worship Nurglites. They are some of the most stubborn damn near impossible to kill just straight up fuck you try me durable. In mechanical terms being a nurglite will make you tougher to kill. Because they are sick, because being sick is a gift from their god to make them stronger. WOW!

There are so many further layers to my love of Nurgle. For one, Nurglites are described as being able to feel no pain. Now pain has an important biological function, but let me tell you, I have way too damn much of it. I haven’t been without pain for 13 years, I haven’t fully relaxed in 13 years, I haven’t been able to think without a dagger in my head in 13 fucking years. So the notion of feel no pain has quite the appeal to me, even if on a rational level I understand that feeling no pain would be it’s own dire problem.

There’s also how the Death Guard fall to Nurgle, where so much pain and suffering is inflicted on them to the point they begged on someone anyone to take the pain away. And yeah Nurgle is the guy who made them feel away, he is evil remember. But hey I’ve been there! I have begged and pleaded and prayed to doctors to please do something anything to make the pain stop, to make me feel better. And you know what? At least the death guard got a fucking answer. I’m still in pain! No one’s answered my prayers. So I understand the utter desperation of a situation like that.

But speaking of what Nurgle does let’s talk about him! Grandfather Nurgle, that’s his title, because that’s his demeanor. He’s a doting fatherly god who loves and cares for his worshippers, giving onto them lovely gifts. Sure, those gifts are horrific diseases. But he’s one of the few deities to show anything close to benevolence in the entire setting of 40k. A lot of his followers follow suit as well. Whether it be the jovial Great Unclean Ones, the feral shitkid nurglings, the Beasts of Nurgle who are literally described as puppylike, or an amicable friendly cultists who smiles at you through rotting teeth a lot of Nurgle’s followers are *happy*. The notion of finding happiness even in a setting as terribly horribly bleak as 40k inspires me to hope I can find happiness in our much happier reality.

There are many, many things I love and adore. So many things that have meant the world to me, that have taught me something that isn’t irreplaceable. But when I chose to get a tattoo I picked the Mark of Nurgle. Because to me, that symbol means love, but it’s also something that will never ever not be a part of me. It means acceptance of where I am and who I am. It’s an attempt to salvage what strength I can from a situation that has rendered me weak. So whenever I need to remind myself of that meaning I touch my tattoo, and I try to embody what Nurgle means to me. My illness isn’t something I can beat. But it’s something I can endure.

#nurgle #warhammer fantasy #warhammer 40k #chronically ill #chronic pain #sickness #illness tw #physical illness #disease

[crippleprophet]

any tips on doctors who just try to push physical therapy on you?

i have chronic muscle pain (hips + knees) and have already done 4 months of pt for supposed pfps (turns out i don’t have it) and it did absolutely nothing to help with any of my pain (i did a lot of stuff for strengthening muscles around my hips). i told the doctor that exercise doesn’t help and that i’m in pain the whole time and they didn’t care

god i’m so sorry you’re dealing with that, myself & tons of others have been through this experience & i so wish i had better answers for you. unfortunately as far as i can tell you’re at a juncture where your decision is basically whether to become a “noncompliant patient” or not –

you can try doing what the doctor suggests & continue putting yourself in pain through physical therapy with the hope that eventually the doctor or physical therapist will be like okay this is doing fuck all let’s try something else

if you’re in a position where this is an option, you can go to a different doctor, but they might just do the same thing

you can keep going to this doctor without continuing pt, with the knowledge that they’ll probably label you noncompliant & will likely treat you more like shit

i wish so badly that there was a certain response that would make them respect you, it’s a shitshow & a crapshoot & you don’t deserve this. you shouldn’t have to put yourself in more pain to receive healthcare & i’m so sorry the system is so fucked. it is always okay to stop going to physical therapy if that’s the decision you want to make, i wish it didn’t carry so many potential punitive consequences from physicians who think their word is god.

the best resources i can suggest are around resisting medical gaslighting; community support + experiences + theory around both noncompliance & exercise intolerance have been very affirming for me wrt like, i’m not making this up. it can also be helpful to journal or whatever to document how you remember your symptoms being worse after exercise, pt, etc so that if later you’re doubting you were “actually” in worse pain you can read back over your experiences.

the mindset that’s also been helpful for me is that even if pt would help, it’s okay not to do it. i don’t owe anyone an able (or less disabled) body, & not exercising doesn’t mean i deserve medical neglect; no one deserves to be in pain even if they’ve “brought it on themselves.”

again i am so fucking sorry. your pain is real, in the vast majority of cases if pt was gonna help there would’ve at least been some sort of improvement in 4 months, & so much current medical science including around physical therapy is rooted in ableist misconceptions. you deserve further testing & pain relief no matter the cause of your pain (or whether that can even be determined). my heart goes out to you & i can’t always respond quickly but feel free to talk about this more if you need to 💖💖

#physical therapy #exercise #noncompliance #medical gaslighting #exercise intolerance #asks

[demigodofhoolemere]

Mystery pain question for my fellow chronic pain folks:

For as long as I can remember I’ve gotten irregular pains in my ankles. I don’t know how to describe this pain, other than that it’s not dissimilar to growing pains, and for years I kind of figured it was probably just part of that. At some point after becoming an adult and clearly not growing anymore, that was obviously not the case.

Nothing ever causes this pain; it will just come on out of nowhere with no obvious reason or trigger, usually just one ankle at a time, and there’s no predicting when it will happen because sometimes I’ll go weeks and weeks without an instance of it and other times it’ll come back fairly quickly after the last time, even successive days in a row. No doctors know what the heck this is and pain meds don’t really do anything to make it stop.

In the past few years it’s extended from only ever being in my ankles. It can now present itself in any of the four limbs, in any spot throughout them. Sometimes it’ll be in one of my knees or wrists and so on, and I’ve now fairly often had it be throughout the entirety of a given limb. At the moment of writing this I have this pain all through one of my legs. Sometime in the past year it was so excruciating throughout an entire arm that I was nearly completely disabled by it, it was agony to do anything with it and I was at the point of tears, which my various chronic pains/illnesses almost NEVER bring me to no matter how bad it can get, my pain threshold is very high. This particular mystery pain is not usually disabling, more just uncomfortable than anything but I can still function well enough during it, but it’s a bit concerning that it’s become enough of a problem that that can happen now. Sometimes it will also be in multiple limbs at once in various spots which is a little annoying; rarely was it ever in both ankles at once throughout growing up so there’s little precedent for it being on more than one side (or limb, now) at the same time, but that’s where we’re at now.

I wish I knew how to properly describe what the feeling of it even is, no description of either muscle or joint pain has ever sounded quite right and I’ve only ever been able to refer to it as simply “my ankle pain” regardless of where it now chooses to present itself. It’s just… this painful discomfort that sort of sits in the spot it’s at, not exactly pulsing or radiating but just… there.

I’m thinking this may be a weird fibromyalgia thing? I’ve never been officially diagnosed with that, but my mom has been for many years now and with the benefit of hindsight she and her aunt think that her mother must have had it based on things she would describe but wouldn’t have had a word for, and as time goes on I’ve developed more and more of my mom’s fibro symptoms. She doesn’t have this same particular problem but I wouldn’t be surprised if that’s what this is and it was simply the first symptom that hit me even as a child and now it’s gotten worse into young adulthood the way that some of my mom’s symptoms got worse with time.

Does anyone with fibromyalgia understand the kind of pain I’m trying to explain and can confirm that it’s likely fibro? Or anyone with some other lesser known thing that this could be? I don’t know what to make of it anymore.

#chronic pain #fibromyalgia #fibro #ankle pain #mystery pain

[skyfallscotland]

I’m going to put this on anon because I like to keep some privacy sometimes but I just wanted you to know how much your writing has touched me

I have chronic back pain. Yesterday was one of the worst days I’ve had in a long time. Like, couldn’t move when I woke up, took way too many meds just to stand, one wrong move from falling apart kind of pain. When it gets that bad, it even hurts my chest, my ribs, and then I can’t breathe and it fucks with my asthma and just— it was a really really bad day. The sort when I seriously question what the fucking point in all of this is. I know I have people that care and that would miss me but sometimes I can’t stand trying to be strong just for others.

So I reread Dangerous Devotion and a little bit of Fear and Flame. I cannot express how much it means to see someone struggling the way I do, and how even if I don’t want others seeing me weak it can be a kindness to stop hiding the pain. And then I saw the snippet you posted today and I just lost it. It’s fucking hard but sometimes it just takes an asshole telling you to get it together to remember to keep fighting.

You don’t have to respond to this if you don’t want to. I guess I just wanted you to know you aren’t alone in this messed up world. It’s hard and it hurts but it means so so much what you’re doing with your writing and you’re making a difference, for me at least. So thank you.

You know, when I posted that snippet just now, I wrote hold on because there are probably a lot of people who need to hear it, and it’s true, you don’t know what you might miss and who will miss you. But staring at the words, I also thought privately about how it’s a kindness to myself accepting that it’s ok to go if I have to.

I always feel torn between needing to be here for everyone else’s sake, because of how they would feel, and the struggle of knowing you’re staring down decades of agony. I’ve always thought acute diseases sounded easier, you know? Chronic pain is just one hit after the other, knowing it won’t kill you, but it will hurt and hurt and hurt forever.

This is why I wrote Fear & Flame, because I can’t conceive of a world where people manage to live in pain like this and just…carry on, perfect mental health. I don’t blame RY necessarily for not including it, she doesn’t have an infinite word count to work with, but it sucked a little; not seeing what I feel is the most pervasive aspect of living in chronic pain.

I’m so grateful I can give that experience to other people, to the ones who didn’t see themselves in Violet.

Remi is mine, but she’s yours too. I write her for us. Thank you 🖤

#you all mean a lot to me too #more than you know #amy’s mail ✨💌

[lacefuneral]

talking abt the drawings

ok so.

i've had chronic pain for as long as i can remember. in high school i literally walked around with a wrist brace on each hand 24/7

despite this, i really wanted to go into art. and i did. i managed to get into art school, studied for 5 years, and earned my degree.

my chronic pain was always there, but when i was on T, weirdly, it lessened. that made it easier to do studio work. with T, though, i had a lot of other medical issues, and decided to stop it in my final year.

regardless of pain, i've always had a "craft" issue. that's what professors referred to it as. it's like... you struggle to color in the lines. when you fold a paper it's crooked. when you trim a print it isn't a perfect rectangle. and anyone who has ever received a wrapped present from me will know. it's like, the messiest thing you've ever seen.

i've always had some kind of like. fine motor difficulty. and that never went way even with my training. in many cases, it resulted in lower grades. but i just kept going.

and i'm unsure if it's due to craft or something else, but i was never a strong illustrator. and that's not too uncommon for some graphic designers. illustration and graphic design are different tracks, even. a lot of us rely on shapes, typography, and patterns instead of very elaborate drawings.

the pandemic (and other circumstances) uprooted my life. instead of going right into a graphic design internship, i was jobless and stuck at home. i sank into a deep depression, and my pain worsened to the point where making art even for fun hurt my body too much.

i think the first time i bothered to try traditional art again was when i made a portrait of my ex boyfriend a couple of years ago, but then i stagnated again.

and right now, i'm in a period of my life where choosing to live each day is very, very hard. but i want to. and i want to try to make art. so i am challenging myself to draw as much as possible. i'm being mindful of my pain and stopping when i need to. and i'm trying to be kind to myself. even if the craft is bad (it will be) and if the end result is Bad Art. because making Bad Art is okay, and because i'm trying to regain muscle memory i lost years ago, and improve upon it.

this is a new medium, too. i have never worked with markers previously. my traditional 2D art was always pencils, pens, charcoal, or acrylic paint. the markers i have are very cheap, and marketed as highlighters for books, not as drawing materials. i'm taking advantage of the pastels, and challenging myself with the limited color palette.

i'm having fun so far. i was always scared of markers for some reason. maybe because "real" brush markers are expensive. maybe because markers have a reputation through bleeding through paper (which i've since learned is often a paper issue, not a marker one.) and i think the permanence, too. i can't erase a mark after i make it. but that's letting me sit with my mistakes.

[meimeikyu]

Dump as many geno headcanons as you physically have and want to share ( also ink ones if you have any )

ONGOMG OK I HAVE. MANY.!!! ILL ALSO DROP ANY INK ONES I HAVE BCS. I LOVE HIM TOO <333

theres no order in this its just. brainrot chaos

Okay first off, I think geno would be really really sensative to colour, both in the savescreen n out of it. Esp with his escaping the savescreen end, I think the ton of colour everywhere would be like super overstimulating for him since hes been in. a black void with minimal colour and light for. A very very long time- i like to imagine hed have like tinted glasses (something like sunglasses but also prescription glasses? i <3 geno with glasses) to help block out the colour n light.

i also think hed have chronic pain and dizziness/fainting spells (totally not just me protecting huh noo) due to having only a part of a soul, snd the fact its affected by determination, i feel like itd cause him a lottt of issues. he would experiment on himself and make his own little gear n gadgets n aids n stuff to help with it bcs. science boy. If he gets too emotional in any capacity (especially anger, but also like too sad even too happy just. too anything) he starts melting again starting from his socket. i think his scar would still bleed out of the save screen. it wouldnt hurt unless ppl are touching it but i think itd always bleed magic. which would be very inconvenient- he also likes to wear white and light colours due to the colour sensory issues which makes the bleeding scar a lot more obvious- i call it a magic defect in my head, basically just a permanent issue with his magic that he cant stop but also isnt inherently harming him.

i think about this guy sm i love him

continued geno ramblings hed keep doing science stuff outside of the save screen, both experimenting with his magic and (when he can rope him in) the other sans of their verse (who i call after). Geno n after would have slightly different memories. i think geno would remember past things after cant, but after can remember like the active timeline better then geno. geno would also have more science knowledge then him i think. Geno would probably lose tract of time in the save screen and have no idea how long hes been there. I also hc hes like. 100s of years old if you count all the time in the savescreen. he doesnt know that though. I think geno would get really paranoid that things would reset and he would get trapped in the save screen again. i dont think he likes the colour yellow. i think this man has (better than in the past) but still very bsd mood swings, which coupled with the fact he could melt and die if its too intense is not great. hed have to relearn a lot of his magic after injecting the determination and it still will never be the same as it was before, i think the determination would fuck with his summoning abilities especially.

(do monsters melt when they have too much determination because monsters are made of magic and determination fucks with and breaks down magic? am i only thinking if this now???)

i think his socket would have melted first because his eyelights have strong amounts of magic. i also like to draw him with not just the socket melted but like. that entire side of his head melted when hes in the savescreen. i think once hes out itd be a bit less melty but still not. pleasant. he has a little fabric thing he made that he wears out that covers that half of his skull to hide the melting. he only sleeps on his left side because if he sleeps on his right or back the melty stuff will get everywhere. I think hes put his hand through the goop into his skull more than once. for. scientific research. if he touches the inside it makes a ringing noise n gives him a massive headache. i think head get migraines very easily and be very overwhelmed by sounds bcs of the melty side as well. his fingers are slightly shorter than afters because the tips (where i hc magic like. pools.) melted off.

I dont know why I have this one but i love the idea of geno being a good singer. i dont know why but i love it. i think hed listen to music a lot, esp to calm down. He would hyperorganize things, and like to keep things on shelves and in draws and trys to keep the floor clean. his workspace would be less clean though, the floor would be clean but hed use the trusty old 'shove everything in the corner of the desk' method. He wears baggy clothes a lot and prefers them. He doesnt like the public. I think hed constantly hear a slight ringing in his head and it would annoy the hell out of him- robbed from my fren but hed always have some sort of sound on like music or white noise and hed have like. at least 2 fans in his room for noise. kinda from cpau but. he would not drink much and gets drunk vv easily (i had another headcanon to put here but. i switched to typing on my pc and i forgor it :<)

this guy is. so silly. so so very silly. is he even a guy? no one knows. i hc hes genderfluid and also pangender n i think hed use a bunch of like microgenders and the promply forgor all of them. i. i dont think he sleeps. i dont think he knows how. until he runs out of paint and WHOMP collapse asleep. I love him being like, nice but very blunt. i think he has 12 projects running at all times and none of them are the same medium. he has an ao3 account im 100% sure. wheres that one gif hold on

uhhhh overall i love this man so much but holy shit he needs a hug and. all the therapy. just all of it. like. yesterday. but ilove him so so much spins him around in a microwave in my head.

THE INK ONES!!!!

oh also he speaks french

THIS ONE!!!! HES JUST DOING THIS IN MY HEAD CONSTANTLYY (i cant find the source if someone has it pls let me know)

yeah i cant think of him without thinking of this gif its permanently my preception of him. hed bully kids on roblox but like in a silly way. i think hes like constantly making little changes to his outfit that no one but him can notice the difference but hed like proudly show it off. i think hed listen to at least one song from every genre and have at least 2 songs he adores no one in their life has ever heard of. he doesnt not have playlists he has one large thing of all his songs and runs it on shuffle. I think bcs of his paints the colours around him can influence his mood, and i also think the saturation of stuff would, n i also think thatd affect his art. Like when hes really happy hed paint with super bright colours but if hes more sad hed use greyscale and dark colours n stuff like that. I think he has a massive collection of art exploring really fucked up things he doesnt show to anyone. I do not think theyd just be sad art too, i think some of them would be but hed also have like max saturated color gore artworks. this guy has never kept a pencil or eraser or pen long enough for them to run out. he has a hoard of supplies bcs he always loses things. I think he has a list of a bunch of aus he wants to draw that he keeps on him at all times (not like aus to create but like, aus he wants to visit and create based on the scenery). i think broomy has a secret compartment on him that ink stores art supply backups and vial backups in. he does forget about it sometimes and has accidentally popped it open in a fight before, scaring both him and whoever he was fighting. speaking of i dont think hed be big on fighting, but i think he would do it sometimes as a way to try and explore how the people interact. i <3 having ink love to like. study others emotions. he has a ton of artworks just of peoples faces portraying different emotions. I dont think hed just draw and paint i think hed write and make music and do any form of art you can think of. except cooking. hes been banned from cooking and baking. he knows why.

overall rating: 6/5 Stars, so very silly

#TYSM THIS WAS SO FUN!!!!! #I HAVE SO MUCH BRAINROT ABOUT THEM I CAN TALK ABOUT HEADCANONS FOR HOURSSSS #LITERALLY FOR LIKE ALL THE SANSES I HAVE A MILLION LITTLE THOUGHTS #oo and alt versions too #i love exploring like. different multiverses #where they all work differently #fgod and mcq have my soul forever #and like.. i have my own little version thats just all my little thoughts about them and making them all interact in the ways i want #not really canon #its just for me to be autistic <3 #i should make a blog for it sometime n like #draw all my versions #ANYWAYS THATS OFF TOPIC #i lvoe rambling #AND AGAIN TYSMMMM I LOVE RANTING ABOUT THEM #ink sans #geno sans #headcanons #my headcanons #infodumping #asks

[not-poignant]

*waves* I want to start off by saying that your works have been a huge comfort in my life over the years. They've helped me through some really trialing times and I'm forever thankful for everything you've done, even when life hasn't been kind to you. I've slowly been coming to terms with the fact that I have chronic pain, maybe fatigue too, unknown still. But it's been a hard pill to swallow, I feel so angry that I can't do stuff. Do you or any of your followers have advice for accepting this?

Hi anon,

Firstly, I'm so sorry you're going through this process, especially one that also involves fatigue, because fatigue is a son of a bitch. (You can - to a degree - treat some forms of pain, but there's almost nothing out there for genuine fatigue except rest and the core needs, and even then, it rarely listens).

My advice is going to be from stuff I've mostly learned for myself, but everyone's journey is different. What I like to tell myself might hurt someone else, so if I say anything here that doesn't work for you, remember it's important to find your own things too.

If necessary, look for support groups, if you have no diagnosis yet but have chronic pain and fatigue, groups for ME/CFS (Myalgic Encephalitis / Chronic Fatigue Syndrome) and Fibromyalgia are probably the best places to start.

As for advice, the first is that it's normal to be angry and it's normal to feel betrayed (by your body and by a very ableist society) and it's normal to feel sad and upset. Acceptance isn't the absence of these feelings, it's not a place you get to where you transcend these emotions, because it's normal to grieve what the course of life has taken from you. And part of the journey of chronic illness re: accepting where you find yourself, is also accepting the emotions that come with it, even if they feel really ugly or you don't want them. Not being able to do stuff you used to do, or the way you used to do it - of course you'd be angry, because that's loss. And loss by nature, creates grief.

Acceptance is the moment - for me - where you have a bad day re: anger and resentment and can stop and go 'oh of course I feel this way, I have lost a lot, but even though I'm annoyed or angry at my body today, I'm going to be kind to it and care for it to the best of my ability, because I'm sick, and that's what I'd want to do for anyone who was this sick. And I'm going to check if I need to ask for help, and remember that I don't have to do this alone.'

There might come a time when you're ready to brainstorm and problem solve, or days where you have more energy. For example, I can't hike for hours anymore, and haven't been able to for years. But I can stop and think 'what did I like most about hiking?' And it would be - the things in nature I can see. Well, I can still get out to nature, especially on accessible paths, or places that have carparks and botanical gardens. Or it would be physical exertion - well, I can do purposeful physical exertion with very gentle physiotherapy, it's not the same, but it still gives me a feeling of physical accomplishment. Or it would be I really like being in nature - thankfully there are a lot of places you can be in nature if you have friends or Ubers to take you there, and you can also bring nature to you re: plants in the home.

Generally speaking, getting creative with what is lost is part of the process of acceptance. But it doesn't always come straight away, and it doesn't always come without resentment. I have days where I'm still fiercely, fiercely angry that I can't do the things that I used to do. The fact is, the world is ableist, friends have internalised ableism, I'm often feeling guilty or frustrated that I can't do things when I just...can't do them and it's not my fault. I'm just sick.

Definitely consider organising some kind of therapy or even vent sessions with someone you trust (who has the capacity to handle it, though not many folks do, understandably) - medical trauma, and the experience of a chronic illness, can be traumatic. And look around for a good doctor and professional support network.

Pain on its own causes fatigue, so look at enrolling in a pain clinic (they have wait lists, so it's good to get the ball rolling now), and make sure that you've had at the very least a blood panel of your inflammatory markers because many causes of chronic pain can be treated or medically supported.

It's worth making friends with some folks who have chronic illnesses and spoonies, or the people who just 'get it' even if they don't. People who will never pressure you when you have to cancel. People who love you when you don't see them for months at a time. People who understand when you vanish from an online conversation halfway through without saying goodbye. These folks are worth their weight in gold.

There's things like - it's worth exploring concepts like mindfulness in chronic illness, as well as pacing (I hate pacing, but the one time I seriously tried it, I felt better and could do more - it's just so frustrating in concept). It's worth writing down the things that trigger bad episodes of pain or fatigue for you, and then thinking of ways to accommodate those things (for example, socialising causes flares for me, so I don't do it often, and I try not to do too much in one week). Research the 'energy envelope' and learn what yours is.

As to the grief and the anger, this is also something you will go through again and again, though the periods of acceptance may last longer, and feel more genuine. We're not trying to stop the emotions of grief and anger, but it is worth learning how to wrangle those emotions when you turn them against yourself, when you look for something to blame and hurt yourself in the process. Remember, if society accommodated disability and invisible illnesses better, your life would probably be a little easier, some things are actually down to how society treats us. If I knew I could access a program that delivered meals because I'm medically too tired to cook, my life would be easier. So when I go 'fuck my body is useless' - the truth is - society is pretty fucking useless, and my body is doing its goddamn best.

But you can be extremely mad at society for dropping the ball on all of this. Or upset. Or disgusted. Or betrayed. It's all valid. Society drops the ball on chronic pain and illness and fatigue every damn day.

The chronic illness train, for nearly all of us, is one that we board eventually, and it almost always has multiple stops. We never just acquire one thing, because age tends to give us age-related chronic illnesses too (arthritis, hypertension, type 2 diabetes, osteoporosis, etc.). These declines can each come as a new shock, and going through one new illness or symptom isn't always going to look as the same process that preceded it. A new chronic illness might feel like nothing at all if it's easy to manage (see my acquisition of allergic eczema) or it might hit you really hard if it comes with pretty reduced mortality (see my acquisition of COPD). You might get decades between one thing and the next thing, or you might not, but it's a train that in the course of humankind billions of people have been on.

The people who treat you badly for being sick are the ones who refuse to believe the train exists and that it's coming for them. They often think that if they live 'well enough' they can avoid the train (they can't). Maybe that was something you once believed as well. I know I did (and sometimes still do).

And as for when we treat ourselves badly for being sick - some of it's grief and trauma, and a lot of it is internalised ableism. Having a chronic illness is not your fault anon. Even though it doesn't feel like it, your body is doing its best for you, and the process of acceptance is learning that we need to also do our best for our body, and that we should expect society to do the same, even though it often doesn't.

Idk if this was anything along the lines of what you're looking for. Tbh I still find it really hard. December just gone was one of the hardest months I've ever had the misfortune of living through not just because of chronic illness but because of my emotional reaction to three new diagnoses I wasn't prepared for, and I spiralled hard when I realised just how sick I was (no one likes to see 'possible severe liver disease' on a CT scan). We never just go through the anger or grief once, but it does get easier, and the periods of time where we just make our lives into a new shape that pleases us become longer.

Anon, you will find new things that please you and fulfill you even as you lose old things. The new things won't replace those old things, but they will bring moments of ease and comfort and joy. We all experience this process. But do chase them down. Look for them when you have moments of energy. Seek them out. The simple things in life that nourish you, whether it's soft blankets, or good food, or a particular movie or show, or a book. Pain and fatigue are bitches, but many of us with it are avid collectors of 'things that nourish, fulfill and are joyous to us.'

I wish you well with it all! The chronic illness train can feel like a very lonely one because it races us away from the people in our lives who aren't on it yet - but the truth is hundreds of millions of us are on it right now, and there will be lots of different types of advice and support waiting for you, and very few of them will deny you your anger at the situation you find yourself in. Very few people find themselves excited to board the chronic illness train, and often you don't realise it's picked you up until you learn you can't get off.

That part sucks. But accepting that it sucks goes a longer way than trying to convince yourself it shouldn't.

#asks and answers #chronic illness #dodgy advice #you don't need to find any peace or meaning in chronic illness #it's just allowed to suck #but if you like to look for peace or meaning or philosophy #might i recommend mindfulness #and also taoism for me #buddhism works for others #tbh i often settle on 'we are imperfect suits of flesh and this was inevitable' #'but damn i really enjoyed that bubble tea right now and that's all that matters in this one second or minute' #you're gonna get so good at collecting things that you love #but give it time #and be patient with yourself #if you love animals #treat yourself like a puppy that's just acquired a chronic illness #a lot of love #a lot of play #a lot of rest #and support when necessary and possible #i have had days where i've had to: if i was a rescue dog how would i treat me' in order to get through it - and weirdly it helps sdaflkfjsa

[alostlittleriverlotus]

so like. I'm getting an inhaler for the time until I can see a professional about my breathing difficulties and possible asthma. And legitimately almost didn't get it despite having it be so bad I can barely even handle things (probable POTS doesn't help and neither does allergies with a deviated septum) cause my mom didn't want to get it in case of side effects cause when she had tried an inhaler years ago, it hyped her up and stuff. And she says she's sensitive to medicines and was worried about side effects if i use it.

1: I'm someone that seldom experiences side effects with most medicines. The biggest one was with an allergy medicine causing me stomach pain and another causing me leg cramps if I took it too frequently.

2: I. AM. NOT. YOU. I am so sick of my mom trying to keep me from stuff that could genuinely be a help cause she's worried about it. Stop it. Just stop it!!! She didn't get me any sleep aids despite my sleep problems yet using some melatonin on really bad nights has actually helped me sleep cause my friend got so worried she bought some for me and I haven't actually needed one in a while. And she didn't want me to go on anxiety meds cause she was worried and she got rid of my Xanax since I "wasn't using it anyway" cause she was worried about it since it's addictive (I asked her if she thought any of us would start using it often or worried about us being addicted and she said no.) And I legitimately had many moments over the past two years where ichave felt i needed one.

Luckily my anxiety meds are handled, I have xanax just in case, and I've got everything I need. But I am sick of my mom controlling my fucking medicine and other shit because of HER WORRIES. When I'm literally given a choice or it's prescribed by doctors. Like stfu. Stfu!!!

And the fact my mom treats me like another one of her. My issues with my brothers got downplayed and she expected it to play out like hers. She ignored my autistic traits because she saw it as "just needing to change cause that's how the world works" like she did. She ignores how high needs I am because she thinks I just have "mild" autism and am "barely on the spectrum if I am on it at all."

Stop it. Shut up. I'm fucking reliant on her cause I'm terrified of doing things on my own and lose speech a lot and can't remember things easily. And she pays for stuff. So I have to have her there, but I'm sick of her acting like she gets the final say on MY medical stuff. I've had breathing difficulties worsen the past 5 years, worsen since I was a kid actually. Like. Let me have the inhaler until we can get in with a specialist and know for sure, let me see if the inhaler even fucking helps since legitimately doing small tasks leaves me gasping for air!!!

I am so sick of her dictating what my reality is, what my life is cause she thinks I'm just another version of her. And whenever I exist outside of this mini version of her, she shuts down and doesn't understand. She thinks I can control my emotional issues cause she did it and so I'm not trying hard enough when I have fucking episodes cause of the fucking stress and neglect I still fucking face as an adult!!!

And even then. Even in tbe appointment. She wanted me to get better and ease my pain so I could actually do stuff. Not in the like...regain my favorite hobbies. No. She means be independent. She still thinks fixing my physical pain is gonna do that. No. I can never be truly independent. I probably won't get a pure fix for my pain either. She still wants me to be functional and independent and acts like because I can't be, it's some terrible thing and it's so fucking condescending and insulting.

I am deeply traumatized, I have somewhere between medium to high support needs, I am a fucking polyfrag system, I have chronic pain and fatigue, I struggle to socialize cause of disorders and energy levels. Shut. The. Actual. Fuck. Up. My goal is NOT to be independent or functional or able to give to society. My goal is simply to lessen my pain and be fucking happy and get everything I was fucking denied as a child cause I was told to just fucking try harder. I will never be independent or functional even if my physical issues were all magically fixed. Cause i am still someone deeply traumatized with the type of trauma most people can't even fucking conceive of. And I am fucking fine with that. I am also someone that cannot be fully independent cause of shut down, mute episodes/speech loss periods, struggling with simple tasks, and more. And I am fine with that. My darling safe person is too. Stop expecting my end goal to be that I can be an independent abled functional person. Because I will never be that.

I simply just want to live and be happy and not be in constant pain or at least be able to manage my fucking pain. To have mobility aids and be patient with myself and to not push myself past limits. I just want to have fucking support and help with my disabilities. Shut the actual fuck up. I hate my fucking mother.

#actually traumatized #actually autistic #actually disabled #semispeaking #semiverbal #abusive mom #neglectful mom #controlling mom #chronic pain #chronic fatigue #possible pots #pots syndrome #heds #hypermobile ehlers danlos #hypermobility #ehlers danlos syndrome #disabled #mentally disabled #medium support needs #high support needs #actually semiverbal #actually semispeaking #system #polyfrag system #programmed did #programmed system #tbmc survivor

[kamianya-ttv]

I really hate the ADHD tax, in some ways more than the physical disability tax.

Because yes, it sucks to have tons of medical bills, to need more expensive precut veg, or lots of microwavable/easy meals. To need to pay for a car rather than be able to take public transport in the city because your body just can’t on trains and buses. To need to have the air conditioner on high despite the cost because otherwise your body stops functioning. Etc etc etc.

Yes, there's so many ways that being physically disabled and chronically ill makes life WAY more expensive. 

But in some ways it's not as painful, as, say, throwing out the leftover chicken wings from yesterday that were supposed to be dinner today, because I left them in the oven ‘til now (8pm the next day).

Because not only do I now have to suddenly face using extra unplanned for spoons to try to figure out new dinner (and I’m writing this right now instead because my brain is having trouble coping with the idea), it's also my fault. 

Not society for the way disabled people are treated, or lack of accessibility.

Mine. 

And yes, there's a big way in which that's not true. I have ADHD. I have memory issues. They're made worse by my physical issues. 

But I still have no dinner ready, I still can't begin to conceive how to fix it today, and it's still because *I* left the chicken out.

I know this is a very specific situation, but this isn't the first time I've had this EXACT case (hey. chicken wings are easy to make, but I have a cat so they stay in the oven until I'm ready to put them away). 

And it's emblematic of the overall issue.

If I could just remember to call Verizon while they're open and I have the energy, I could get the financial aid discount. If I could just remember to return that item before too late, I'd get my reimbursement. If I could just remember those veggies in the fridge, they wouldn’t go bad and need to be trashed before I can cook with them, causing both food waste and money waste.

And not only does every little forgetting-late bills, repairs getting forgotten until they're much worse, a car issue forgotten except when in the car, etc etc etc etc-add up and up and up? They're my fault. There's no one to blame but me.

And DAMN that hurts.

I don't have tips or tricks this time. I have no solutions. I have knowledge that it's technically something out of our control, but still knowing that rarely helps the guilt. 

So yeah, that's what we mean when we say "ADHD tax", and that's why it can be so freaking painful to deal with.

I don't really know where I'm going with this, except to share that this is a thing and that if you do it too, you're not alone. 

If you do it too, feel free to speak up here.

But right now, I’m going to mourn my delicious wings that would not be safe to eat, and try to find the energy to make something new or the money to order something..neither of which I have right now.

#ADHD tax #adhd brain #adhd life #spoonie life #I am so sad and so mad at myself right now #And just hope that maybe this post can help someone feel less alone #or help someone understand more about what ADHD can be like #because out of sight out of mind can be an absolute curse #long post

[cripple-culture-is]

this might be a very weird question bc i dont know how to word this but. i have tmj and im pretty sure i have hypermobility joint syndrome (not diagnosed?, my family has a history of it) but im not sure how to bring it up and a doctors appointment is expensive. its currently at a point where im constantly in some form of pain, especially in my knees and my fingers- im trying to save up for compression gloves or knee braces bc the pain is so overwhelming. everyone i know is able bodied so i dont really have anyone to go to for advice, where do you think i should go from here?? (sorry if this is a bother!! feel free to delete this i know its a lot)

This is a difficult one to answer. I'm honestly not that knowledgeable about the diagnostic process for a lot of conditions, mostly because I was diagnosed with my issues so young that my mom and grandma did all the work. I haven't officially been diagnosed with anything since, even though I believe I have undiagnosed issues (an autoimmune thyroid condition being one of those).

Have you brought it up with your family at all? You could tell them that you've been experiencing symptoms.

Just because you're undiagnosed doesn't mean you don't have a certain condition. Unless it becomes a severe issue, you don't have to get diagnosed right away, especially since you may not be able to afford it. Remember that diagnoses can take a very long time in some cases. Sometimes they even take decades. I was diagnosed quickly, but that was because my family already had experience and my grandma and mom are very stubborn and fought for me.

I'd recommend bringing it up to your family. If you can't get diagnosed, maybe try speaking with those in your family who have that condition, if possible. Get their advice, their perspective, ask about their experience, etc. Do some online research on it and ways you can help yourself. Go onto social media and search for people who have that condition.

And if you think some sort of aid will help you, definitely save up for one. You don't need a diagnosis to get things that will help you. Plenty of undiagnosed disabled people buy themselves mobility aids in order to help them. So if you firmly believe that something is wrong with your joints, don't let your lack of a diagnosis control you and stop you from doing something to help yourself.

Diagnoses are a thing of the modern era. Diagnoses like we have now haven't always existed. Modern medicine isn't as old as many people think it is. And many of these conditions are lesser known. Which means that even if you were able to go to a doctor, medical gaslighting is still possible, even for those who actually have a diagnosis.

I have a friend who has been diagnosed with multiple disabilities, multiple chronic illnesses who was told by a doctor that she was faking, even though she has a bunch of diagnoses. So that's just one of many obstacles you could run into when attempting to get a diahnosis.

I hope this helps

If anyone else has any tips for this user, please comment 😁

#cripple punk #cripplepunk #crip punk #cpunk #physically disabled #physical disability #physical disabilities

[iris-writesx]

loves me like i’m brand new | gentlebeard

read it here, or read it on ao3 <3

soooo i know i posted one fic on this account and disappeared, but one of my dearest friends encouraged me to watch ofmd with them a couple of weeks ago, and i am obsessed. i’ve watched the show like three times since then and have been grabbing at any fics i can get a hold of, and couldn’t stop thinking about some of my own. so that what i’m going to be doing :) this is my first fic i’ve written for ofmd (and the first fic in a while) so it’s probably not great, please be kind <33

i feel like it doesn’t need to be said, but just in case, i don’t actually know the canonical history of ed’s tattoos it’s all my interpretation

the title is from “call it what you want” by taylor swift x

2k words — fluffy and domestic, post-canon. recreational drug use and chronic pain is mentioned.

༶•┈┈୨♡୧┈┈•༶

From their little inn on the shore, the sound of the waves against the beach was a constant and grounding sound. Of course, that sound had been a constant for as long as Ed could remember — he had spent more time at sea than he had on land, the sea was always there. Even tucked away in his little bunk on Hornigold’s ship, in whatever bedrooms he claimed as his own on his many raids, or, more recently, in the confinements of the Captain’s quarters on The Revenge, the sea could always be heard.

Of course, from their little shack on land, the sound of the water was much more distant. It was nicer, in Ed’s opinion. It couldn’t be heard unless he focused on it, unless he sat and listened.

It helped when he was grounding himself… or whatever the fuck Stede called it when he needed to calm down.

The wind was gentle so the waves lapping against the shore were gentle and kind, just a soft noise that drifted in and out of his focus. As soft as the gentle candlelit glow of their bedroom, or the gentle strokes of Stede’s calloused fingers as they moved up and down his arm. As gentle as he felt, with the haziness that was building in his mind.

The smell wasn’t quite so gentle. Ed only smoked tobacco on the regular, so he hadn’t quite come accustomed to Stede’s preferred smoking habit. But they had been at their inn for coming up a fortnite now, and on their last adventure into town Stede had bought some. After years at sea, just like Ed, he knew that Stede sometimes got achey. Like Ed’s fucked up leg, his partner also suffered from pains, and Stede insisted it helped. And Ed’s fucked up leg wasn’t going to get any better, so he had agreed to try it with Stede.

They had waited until they could just spend the evening doing nothing. The living room was all painted after a day’s work, and whilst furniture still needed to be bought, and walls needed to be fixed, it was slowly but surely becoming a home. Stede wanted to get the crew over for a visit as soon as possible, and whilst Ed wasn’t quite so eager to disturb the peace, he admittedly did miss the group. With Izzy as the new Captain of The Revenge, he knew they were in the safest possible hands.

But he did miss the unlikely found family.

“Ed, darling,” with his eyes closed, he felt the warmth of Stede’s hand against his chin and tilted his head backwards without any further insistence. Stede’s thumb pressed to his chin and urged his jaw to slacken, lips parting, and soon enough he felt the warmth of Stede’s breath as he pushed the smoke from his mouth, which was pulled right into Ed’s lungs on his inhale. After practicing all evening, he knew to hold it, before Ed exhaled the smoke for a second time. “There we go.”

Ed could smoke tobacco until the sun went down, but weed? He had tried earlier, after Stede had meticulously rolled them, but he had almost hacked up a lung in the process, to which he had been urged to stop. And to be honest, he preferred this option — the closeness between them, the warmth of his breath, Stede’s hands gentle on his face to guide him where he was needed. At first, when Stede had first suggested shotgunning the smoke instead, they had gotten a little carried away and made out until they were both hot and out of breath. But after a few shared joints, they had both fallen lax and mellow. Ed was splayed out across Stede’s lap, his head against his boyfriend’s thigh, whilst Stede was propped up against the wall beside their bed.

His hair had long been pulled from the braid it had been held in all day, which allowed for Stede’s fingers to drag through the grey strands until his eyes closed and the haze of his mind grew even hazier. If left long enough he could’ve easily fallen asleep there in his lap, high and satisfied.

Stede’s fingers were on his arm again. But as he focused on the touch, they weren’t mindlessly stroking. It seemed like he was tracing patterns into his skin, and it was only when Ed opened his eyes and looked down, he realised that his tattoos were being traced. His eyes flickered upwards, and Stede looked so concentrated. It was almost entertaining.

“Like ‘em?” It was a silly question. Ed often caught him staring, especially at his tattoos. Some of them had been inked into his skin for so long that he often forgot that they weren’t supposed to be there, thought that they weren’t anything special. But Stede? Fuck, Stede looked at him like he was God, and he looked at his tattoos like they were biblical scriptures. He didn’t think he could ever get used to how Stede looked at him, how he made him feel. He hadn’t felt loved in so many years that it felt new, it felt overwhelming, but it certainly felt good.

“They’re beautiful,” Stede’s voice was soft, his eyes flickering up to meet Ed’s for just a moment before they were back on his arm. He continued to trace the tattoos, before his finger halted, and Ed watched his eyebrows scrunch. “Is that a game of hangman?”

Ed also looked down, saw the little game marked into his upper arm, and scoffed a breath of a laugh. “Yeah, we didn’t have any more paper. Said Jack could play on my arm instead,” he didn’t miss the way Stede’s relaxed nature stiffened just a little at the mention of Calico Jack, and wordlessly he lifted his arm to squeeze his thigh, thankfully feeling him melt again. “Got a lot of little doodles n’shit on there, mate. Half of ‘em don’t matter.”

Stede really seemed to focus, then. He shuffled upwards against the wall so he could lean down and get a closer look, and Ed could only watch his expression in the fondness he held only for Stede. His limbs were relaxed and loose, and he let Stede lift his arm up to see the tattoos closer without any resistance. His arm was turned from all angles, his touch remaining as gentle as it always was.

“You have a lot of stars.” Stede noted, spoke it as if he were talking to himself, the words soft and mumbled. His fingers traced over all of the little stars along Ed’s arm, his touch so light it was like he was feeling something fragile. And Ed supposed if he were to be fragile in front of anyone, it would be Stede.

“Stars are cool,” He shrugged, looking down at his own arm for a brief moment before his gaze returned to Stede. His gaze always returned to Stede. “Got a lot of them because I thought they were cool, actually. Look at that shit,” he pointed to the mermaid etched into his upper arm, just below his shoulder. “Mermaids are cool as fuck, Fang swore he saw one once.”

“Did he?” Stede looked so invested, just from his little unimportant story. He never failed to leave Ed surprised. Stede, the Captain who would read stories to his crew every single night so they slept well, was entertained by Ed’s stupid little story about his stupid little tattoos. How nobody had fallen for him before was beyond him.

Lucky for him, of course, but still beyond him.

“No clue. Still, sick tattoo, though.”

Stede nodded, smiled, before he leaned down a little further so he could press a kiss to Ed’s mouth. Just a light press, nothing like they had been doing earlier, but it was a kiss from Stede Fucking Bonnet. Ed could’ve lept up with joy. If he didn’t feel so languid, anyways.

“Ready for more, love?” Stede nodded towards the joint between his fingers once he had leaned away, and Ed nodded almost eagerly. Of course, he was probably more excited for the action of shotgunning rather than the high he’d feel from it. Anything to be close to him.

The joint was lifted to Stede’s lips, and he watched as the end started to glow red as he took in a drag, before his hand was on his jaw, tilting his head upwards so he could brush their lips, pushing the smoke from his mouth and into Ed’s. As he started to lean away, though, Ed lifted a hand to hold the back of his neck to keep him there, and kissed him a little more properly than before, exhaling as he kissed his bottom lip, feeling him melt into him.

Stede pulled away sooner than Ed would’ve liked, though he was leaning at an awkward angle. The hand that returned to his arm was enough to keep Ed satisfied, though, so he just let his eyes fall shut as he relaxed back into Stede’s lap.

“How’s your knee feeling now, love?”

Another reason that they had decided to smoke that evening was because after a long days work, Ed’s knee definitely felt a little worse for wear. He had been up and down the ladder painting, and whilst it wasn’t being used to run around during a raid or swim or fight, it had still been overused, and it still hurt. They had been at the inn for such a short period of time, but he had gotten used to relaxing. His knee had definitely grown accustomed to doing fuck all.

It had been hurting so badly after dinner that, as much as he wanted to help Stede clean up, he had to just sit and try to ignore the throbbing pain that shot up his leg. Stede had then urged him into their bedroom, where after changing into their nightshirts, he had rolled them their evening treat.

“Feels fine, yeah,” he had forgotten it was even supposed to be hurting. The languid state his body was flowing in was drifting him away from focusing on anything but Stede, really. Ed lifted his leg, experimentally bending it at the knee. He could feel the movement, could feel the pain there, but it was almost muffled. Dulled by his haziness. He lowered his leg back down, and tilted his head to kiss Stede’s wrist. “Forgot it was hurting. This shit is great.”

Stede chuckled, and his hand moved from Ed’s hair to his cheek. Ed nuzzled into the warmth, and felt the thumb pressed underneath his eye, stroking softly. He could’ve started drooling. “You just like getting to kiss me.” Stede accused jestly, and Ed laughed.

“The high sure is a bonus, mate.”

Ed kissed Stede’s wrist once more, before he relaxed his head against his thigh once again, sighing out deeply. He enjoyed this new life they had — the domesticity, the quiet, the company. Getting to fall asleep tangled up with Stede every night without worry of a raid or a storm was soothing. They could just… exist. Together.

Ed had felt like something was missing for so long, and for so long he had been wrong. He wasn’t missing more adventure as Blackbeard, or his solitude, or money. He had been missing his purpose — Stede. His purpose had never been Blackbeard, or being Captain — the latter was more Izzy’s purpose, who had proved that over his time as Ed’s First Mate time and time again. And now Ed was happy to think of his friend out there leading The Revenge.

But no, Ed belonged with Stede. He deserved this little life that they were starting to and would build for themselves.

He was finally truly happy.

“Why’d you get the spider?” Stede lightly stroked the back of his hand, and as Ed dove into the story behind that particular tattoo, he came to the realisation that he had never felt so at home in his life.

༶•┈┈୨♡୧┈┈•༶

comments would mean the world <3 requests are open!

#our flag means death #our flag means fanfic #edward teach #stede bonnet #edward teach x stede bonnet #blackbeard x stede #blackbeard #gentlebeard fanfic