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#thank you for sharing the pain

800-dick-pics · 5 months

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Help Me Get a Service Dog to Live a Better Life!!!

I have been waiting for years for and an opportunity like what I have just been given. I have been researching service dogs extensively for years, and now I have an opportunity to get a prospect for one…… but in 2 WEEKS! I need help funding the cost of the puppy as well as the flight ($2500 approx) to get across the country. While this has been on short notice please know that this has not been a rash impulse choice, this all has been in the making for sometime now, and there is already a dog picked out that is perfect for my needs. My community is ready and willing to support me through this process of training a service dog and think it could be one of the best things for my health.

Having a service dog would allow me to work a traditional job again, would allow me to have more freedom and autonomy, this is going to change my life in a very impactful way. I want to be able to leave my home without fear of passing out and falling, I want to be able to work again, I want to be able to get out and be a human being again, to finally have the ability to do things by and for myself!\ For the first time in a while I have hope for my future, hope that my quality of life can improve, hope to feel like me again.

Please if you can share and donate! This is vital to my health, my quality of life and future.

$2,600 GOAL!!!!!!!

CA: $sleepyhen

VN: wildwotko

Dm for Paypl

#chronic illness #chronic pain #spoonie #pots #ehlers danlos syndrome #service dog #please help me get my life back #I am legit crying bc i have the opportunity to get a prospect which wasnt in the cards before #This would help me so much and i might be able to have job again!!!!#thank you to everyone who shares and cares in advance muah!

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deoidesign · 1 month

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Happy EDS awareness month!

I'm a webcomic artist with EDS. be aware.

EDS affects many parts of my life. I have chronic fatigue, chronic pain, and I need to use a cane! I often find myself ruminating on themes of chronic illness in my work, whether or not I am intending to include them.

I already can't paint anymore, it hurts my hands too much... Anything that requires small details or precise motions will hurt me for days. I have a lot of grief around it. But working digitally allows me to still create!

I animate, I illustrate, I get to tell my stories. I have to go slow, take huge breaks (often against my will) and recover slowly. But, working in this space allows me the grace to do this.

So, I just wanted to share a bit of my experience with my audience, and say thank you for reading my work and supporting me! It means the world to me, and I hope maybe someone in my audience feels a little more seen through me sharing this. It causes me pain, but I love myself; and that includes my disability.

#I thought about putting my comic patreon and kofi links on here but it felt wrong #I really want this post to just be for my audience!#just so you can feel a little seen and just learn a little more about me #I am NOT inviting invasive questions #this is NOT opening the door to discussion on ways it affects my life #this is me sharing a limited glimpse into a part of my personal life #the real pain that this has caused me is shit like my bfs mom telling him to break up with me over it #and people calling me slurs and whatever #I mean obviously the pain itself too but #yeah.#I dont want to talk about that trauma to my thousands of followers in a way they can reblog it and share it around #so #this is all just for you guys #I love you!#thank you for being here #it's the only reason I'm able to create #is because of the support people give me.#well. I mean actually cause of the support webtoon is giving me tbh #I do NOT make enough to quit yet #but the support from my audience keeps me going and makes all the shittiness of my job worth it #it reminds me that creating stories is worth it all #the physical and emotional pain!#so thank you for keeping me motivated and going

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sailor-moon-rei · 6 months

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Hey! As you remember, last year I had a problem: a herniated disc. You helped to heal, for which I am very grateful. Now I have the same issue. I was treated for more than a month, but the money is running out quickly. I need blockades and physical therapy. The hospital in my small town does not have such procedures, so I have to travel 80 km to a big city, and this is also money for bus tickets. For a long time I had no pain, but now there was an exacerbation, and I feel pain again. It is difficult for me to go to the cats and feed them, to bend down. So please pay attention to this post.

These are photos from the hospital where I had a shallow and deep block under x-ray control. One such blockade costs 140 dollars, another is about 70

Repost is also helping! Thank you

buymeacoffee

paypal [email protected]

#herniated disc #hernia #back pain #chronic pain #thank you #tw hospital #tw injections #signal boost #boost post #mutual aid #ukrainian #donations #urgent help needed #urgent help #please share #please rb #herniateddisc

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jasperyourmutt · 22 days

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hi everyone <3

I have a bit of a life update. To make a long story short, last week I was diagnosed with PTSD. I have been having a... very hard time coming to terms with that. For most of my life I believed I just had a bad anxiety disorder, but I am now realizing that is unfortunately not the case. The past couple months I have been in a near constant state of fight or flight, fear, panic, whatever you want to call it- without really realizing it. and man. it has been exhausting, mentally, physically, spiritually. I just thought it was normal to feel like this all the time. i assumed everyone felt like this. my therapist has helped me realize I am in a lot of pain right now and it is not normal. so. the good news is that there is an intensive trauma therapy that I will be doing for the next couple months that is going to really help me recover. i love and trust my therapist with my whole heart. there is a light at the end of the tunnel. i am finally getting the help i need. so. unfortunately I am going to step away from tumblr for a bit. i dont really want to do this, i love being on here. i love interacting with all the friends i've made here. kink has become a very important and healing part of my life. but it is just a little too much for me at the moment. I'm not sure when I will return, could be a couple weeks, a couple months. I'll return when I feel right. I feel like this may be a little odd to share here, but it's important to me to acknowledge and share that I have been having a really hard time. i tend to downplay when i'm in pain. i feel like people usually don't care about me (i know this is very very much not the case. im trying to convince my brain of that too.) its really hard for me to tell people when i am struggling, especially in my real life. so i am taking baby steps and starting here. so, until I return- chase your tails for me, roll in the grass, bark at the squirrels. take care of yourselves. if you are struggling, know youre loved. get the help you need. i will be curling up in my dog bed and taking a nap in the sun. ruff ruff. wag wag. much love to all of you.

#agh personal posts. i know this is mainly a dogboy kink blog and some people will not care. but this is my blog and i will share what i want #i am safe and okay. i am just.. struggling to accept that i am very very sick right now. i was raised to just push that shit way down.#im done doing that. i am going to have to feel all the pain to heal it. nervous but excited. ready but hesitant.#anyways. hi. i love what this blog has done for me. for what this community has done for me. i will be back. you cant get rid of me!#will be keeping an eye out for messages for the next couple days. but this post is mainly to give myself permission to take a step back.#its weird. i feel obligated to post here and am feeling guilty for putting myself first. but thats the trauma i guess!#anyways anyways anyways. if youve read all of this i love you. thank you for listening. see you soon.#jasperbarks

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tavyliasin · 5 months

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A gift, from Tavylia and the Dear Abdirak fans who made this happen, and of course the star of the show himself~

Hello darlings, dear ones, and sinners all~ This cameo is our gift, for all of us who know pain a little too intimately. Written and joint funded by Abdirak fans and Lia, to provide some measure of comfort. Please, enjoy, know you are heard, you are loved, and you are never alone when enduring the most intense of Loviatar's affections. (And all my gratitude to Declan for making this so very swiftly right before going offline for his holiday)

--- The script, including content there was no space for, and some more notes from Lia, will follow after the cut~ This one is clean, no NSFW content, so feel free to proceed at your leisure. For those new here, please be aware that the majority of my content is around NSFW writing with a few art shares and essays on fandom things. Welcome, and I hope you enjoy your stay even if you're only here for this one video.

About The Script

Even with the additional payment, the maximum character limit in a request is 650. My original draft? 1117. We got out the knives, we cut it up, we boiled it down to the most pertinent line, and still had to defenestrate some of the punctuation. Far be it from me to ever know the meaning of brevity, loves, simply not in my extensive vocabulary. I also cannot thank Declan enough for the stunning performance, both in the game and in the cameo, and for giving us a character who we can relate to and adore in so many unexpected ways.

The Script We Sent

[greeting] Loviatar Maiden of Pain felt the echo of your pain singing through infinite realities. In her mercy, she has allowed us to speak. Agony is a cloak that you wear, armour you cannot remove, it is as bound to you as the guilt you feel for its very presence. I might envy you, but you did not choose this path. Your penitence is unnecessary. Let go, dear one, do not punish yourself further. The ebb and flow of exquisite torment, the rise & fall of the tides, you need not try so hard to swim. Breathe. Whether it is of the flesh or mind, your devotions have been heard. [reminder to share burdens/rely on each other/not alone/anything else]

The Original Draft Script

Greetings, Dear Ones, beloved of Loviatar - perhaps too beloved, in your case… Your pain sang through the fabric of the planes of infinite realities, catching and pulling at the Weave like a loose thread. My Goddess, the Maiden of Pain, she felt your echo through her web. Through her mercy, she has allowed me to speak with you. Agony is a cloak that you wear, an armour you cannot remove, it is as bound to you as the guilt you feel for its very presence. I might envy you…but you did not choose this path. Your penitence is not necessary. Let it go, dear one, do not punish yourself further. The ebb and flow of exquisite torment, the rise and fall of the tides, you need not try so hard to swim through them all. Breathe, keep your head above the water. Whether it is of the flesh or of the mind, your devotions have been heard by our most beloved Maiden of Pain. You endure it well, and you are not alone. There are other voices that sing her melody, listen for them, share your burdens and know you are all very dearly loved by the most gracious Loviatar. Even if her affections are a little excessive…

Lia's Notes And Thanks

First of all, a HUGE thank you to the dear ones who helped this happen, with encouragement, editing advice, and throwing some pennies in the pot to cover the cost I couldn't do alone. I shan't name names but you are already well aware of the endless affection I hold for you all. For everyone else, I really do hope this brings you some measure of comfort. It's important to recognise how much we tend to give of ourselves even when we suffer most, and how harsh we can be towards ourselves too.

You are not a burden, having needs is normal and natural, the people who matter most should be there to support you just as you would wish to be there to support them were your roles reversed.

We can rely on each other to a degree, even if it is just to listen, to say "I understand, it's alright to feel all of the things you are feeling. You do not have to be strong, you do not have to wear that mask of endurance with me." So do let go of that guilt, dear one, it does not serve you. If you would like to read more of a discussion on chronic pain, Abdirak, fandom, please see the main essay on the topic (click here) though be aware there is discussion of the more spicy topic of how pleasure and pain can be entwined, even for those of us who feel too much pain in our every day.

Tavylia's Offer

I'm going to round this one off with a simple offer to you all. Should you wish for words of comfort from a beloved character (probably BG3 but if I know the character well enough I can try others), send them to my ask box, or on Discord/Twitter/Anything on my Carrd. This is what I have worked on before, mostly SFW (only some light suggestive moments) as the focus is on comfort to the reader.

Abdirak - Migraine Comfort Yurgir - Migraine Comfort Tav - General Comfort, with Audio Multi-Character Comfort Drabbles (Including Abdirak)

If my little words can bring you any measure of comfort or relief, you need only ask.

Farewell for now, Dear Ones, darlings, loves, Pain Pals, - all of you. Please take care of yourselves - hydrate, nourish, and for the sake of the gods please allow yourself some rest and be kind to yourself for a change. And I do mean all of you. No exceptions, now. Love yourself with grace and forgiveness, care for yourself as if you were the most precious friend you have ever made. I hope to see you all very soon~

May Loviatar's blessings be more merciful. ~ Lia

#baldurs gate 3 #bg3 #abdirak #cameo #chronic pain #chronic illness #comfort #words of comfort #comfort in fiction #pain pals #Loviatar #loviatar loves you as you are #tavylia also loves you #so learn to love yourself too #feel free to share this post and save the video for the times you need to hear it most #thank you again to everyone who helped make this happen you're stunning you really are

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agent-gladhand · 4 months

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Hihi, opening up comms because public transportation has yet to overtake the four wheeled menace, and mine is currently exploding! I need to cover costs so I'm reopening comms a bit earlier than I'd planned to!

I've opened up 5 slots for regular comms and also added an option for a quick doodle of your silly little guy for $10 as an unlimited slot for now! For anyone who commissions me right now, as always, your support is much appreciated!

---

Commission me here (PLEASE READ RULES AND DM ME BEFORE PLACING COMM):

New Emergency Comm Option:

Past Commission Examples:

#talking hand #commission open #art commisions #pokemon commissions #reblogs much appreciated #didn't think I'd be opening comms again so soon but the fates weave in such fun (painful) ways #but yes thanks for anyone who shares and sends some work my way you are super rad #rambling

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good-beanswrites · 6 days

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One more scene from Fuuta-Es convos with @waivyjellyfish for now :3 I liked exploring Es' post-canon mindset as an ex-murder investigator... Like my other drabble, I don't have the details worked out but Milgram is over and they're living at the Kajiyamas' now.

What Fuuta didn’t know wouldn’t hurt him.

It’s what Es told themself as they slipped into his clothes. They’d spotted the outfit at the bottom of Fuuta’s closet a few days ago, then decided to bide their time. With Fuuta and his sister downstairs having breakfast, there was a small window of opportunity now.

Es stuck their arm through the red-striped sleeve. They still didn’t know what possessed them to put it on.

Was it the appeal of something familiar? In a world devoid of all memories, they enjoyed the idea of putting on at least one outfit that they’d seen hundreds of times on their little music video screen. Is it possible to be comforted by someone else’s memories?

Was it old habits? They’d spent each trial doing anything and everything to feel closer to the prisoners. To take a peek into their minds. To step into their shoes. This was taking it a bit literally, they knew. Although everything was over and they had no reason to connect so deeply to any of the prisoners, Es couldn’t get away from the duty they’d obsessed over for so long.

Maybe it was just their troublesome curiosity, always driving them forward. There was a small part of them that hungered for more information, no matter the reason. They were perfectly aware that putting on Fuuta’s red and blue tracksuit would probably offer them absolutely nothing new, but they had to try. Something might be revealed to them, and they needed to know.

Es stood in front of the full length mirror. They turned one way. They turned the other way. They shifted their arms. They cocked their head.

Sure enough, nothing.

They took note of the little details. It was a little big on them, (though it wouldn’t take them long to catch up to Fuuta’s size). It was neither fashionable nor tacky. The material wasn’t exactly comfortable, but at least it felt warm.

But, did it make them feel any closer to Fuuta?

They contemplated a moment, thinking of all that he may have done in the outfit. There were so many classes these pants had walked to, so many arcade coins that these pockets had held. Es wondered if his friends ever nudged the shoulders of the jacket playfully. Maybe they weren’t the type. It had probably seen it’s share of all nighters. And also lazy days spent in bed, or sick days laid up on the couch.

They puffed their chest out, thinking of the confidence Fuuta may have had wearing this. They pulled the hood over their hair. It had likely seen just as much as his hesitance. How many times had he sunk into the thick material for an escape? Or was there an opposite effect – did he feel so comfortable in this that he could commit murder?

Es stared at themself.

There came some shuffling out in the hall. Before Es could move, Fuuta was shouting to his sister and bursting into the room.

“Will you get out of my fucking hair if I bring it to you right –” he froze. “Now...”

Es, too, was frozen in place, their eyes wide.

“I-I’m sorry.” They started unzipping the jacket. “I saw it and… I didn’t mean to –”

“ – It’s fine,” Fuuta muttered. He waved his hand dismissively. He started shuffling things around in his desk drawer, angling his head down, out of sight. His voice was strained, though it wasn’t as angry as Es had been expecting. “It’s not like I’m ever gonna wear it again.”

Es carefully folded the jacket over their arm. “I wasn’t trying to bring up the past. I was just…” What had they been doing?

“I said it’s fine.”

“I know it’s not.”

“You don’t know anything. Wear it every day for all I care. I was just gonna toss it.”

“You still can. Or, I can.”

“Nah.” Fuuta retrieved what he was looking for. He paused in the doorway, taking one last look over his shoulder. “Looks better on you, anyway.”

Es straightened in surprise as he left. They took another look in the mirror. They allowed themself a small smile. They might have undersold how comfortable it was.

Now that they were thinking of it, they did look pretty cool… Maybe that was all there was to it.

#milgram #es #fuuta kajiyama #instead of mvs jackalope should just let es wear the prisoners' murder outfits #adfasdf but really - theres always an interesting closeness that comes from sharing clothes #and i think investigator-brained es would be going crazy with Thoughts #i love the idea of them unable to stop analyzing the prisoners even when theres no need to anymore #it was their One And Only Purpose In Life for a long time and thats hard to shake you know?#also listen. i had to cut a line that ruined my dramatic flow but listen. fuuta was SO nervous wearing that when she died.#hed be scared and running home and sweating. and then hed refuse to touch it from the emotional pain so it would never get washed.#that thing is Boy Stinky im so sorry to break it to you -_-#thank you for the ideas pal!!! im taking a break now but im keeping the others in my back pocket - maybe to write more at some point 👀#drabbles

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wellplacedbanana · 7 months

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I’ve seen a few posts recently talking about how important it is for us to share our tips for dealing chronic illness with each other, and I’ve realized that as a freakishly avid community enthusiast, I’ve been falling down on the job. So, I present

Wellplacedbanana’s Ridiculously Long List of Tips for All Things Chronic Illness (Curated Over 8+ Years):

Infusion Centers

Headed to an infusion center to get that sweet sweet (expensive as hell) live-saving medication pumped directly into your veins? Here’s what I do.

Bring headphones or earplugs. Most infusion centers try to maintain a semblance of quiet for the patients, but it can get loud fast—beeping IVs, pulse ox monitors, loud families, codes. Some infusion centers do pods of multiple people and some do individual bays, so this can affect noise levels.

Drink lots of water before if you have to get an IV placed. Don’t worry too much about bringing a water bottle because they’ll give you one when you get there. (Of course, if you have something like POTS and need more intense hydration, bring the damn water bottle.) If you’re not hydrated and they can’t find a vein, they’ll call in the ultrasound tech, and they’ll bring the longest IV needle you’ve ever seen. It hurts. Drink water.

Bring a book or your Switch or something else to entertain you, but don’t expect to actually do it. I tried bringing papers to edit the first time because I was like “Oh it’s an hour and a half of uninterrupted free time. I can get so much done!” I was wrong. The nurses are constantly checking in for vitals, the unit can be loud, and I spent the whole time trying not to vomit everywhere. Different infusions will have different side affects. Knowing what yours might be will help you plan for what you want to bring. Knowing how long your infusion will be can also help. Most infusion centers have to keep you 20-45 minutes after your first dose of a new medication to make sure you don’t have an allergic reaction, so factor that into your time too.

If you’re in a pod with other patients who’re friendly and if you feel up to it, don’t be afraid to talk with them. Lots of them are lonely, bored, interested in other people, etc. I met an elderly Thai lady one time who had been there for three hours and would be there for another four AFTER I left. We talked about her husband and her kids, and she listened to me talk about punctuation as style in prose. It made me feel less alone in the medical system and helped distract me from the nausea.

Conversely, if you don’t want to interact with anyone, snap on those headphones and block everything out. The nurses will get your attention if they need you. Don’t worry about staying lucid. Your job is to get the infusion and do what’s best for you.

You can bring snacks if you want, but most units/centers will have something to munch on or can order you something from the cafeteria if you’re at a hospital. Also the medication and the smells in the unit always make me nauseous, so it’s kind of a waste for me to bother pulling together food before I leave. You can always eat before or plan to get something on the way back. Going through a drive thru to get something with protein is my go to.

If possible, schedule your next appointment while you’re there. I have to go every three months, so I schedule the next one while I’m there, and then I never have to make any fucking phone calls. Phone calls are the worst.

My last and most important tip: ask the nurses when you need something. Blankets, water, snacks, pain meds, the lights turned off. If they can’t do it, they’ll tell you. They’d rather have you ask and have to say no, then you be uncomfortable. Don’t suffer if there might be a solution.

Dealing with Shitty Doctors

There are shitty doctors everywhere, in every specialty and every hospital system. It sucks, and you can do your best to avoid them, but most chronically ill patients will have to put up with one at some point. Here are my suggestions:

If they’re refusing to acknowledge one of your symptoms is a problem (won’t order tests, won’t refer you out, won’t ask any questions), tell them it’s affect your Activities of Daily Living. ADLs are one of the ways doctors measure severity of symptoms and quality of life. ADLs are the absolutely essential things you need to do to be a functioning human: eat, shower, get dressed, brush your teeth. ADLs are a trigger word for most doctors. Physical therapists and occupational therapists were created specifically to help patients achieve their ADLs. If you’re having severe joint paint, say it’s affecting you’re ability to shower and dress in the morning. If you have intense fatigue, say you’re too tired all the time to cook food to eat or even brush your teeth before bed. Tell them your symptoms are affecting your quality of life and your ability to function daily. This won’t always work, but it’s a good starting place. (A side note: if you have have to submit an insurance appeal for something that was denied, citing ADLs as a reason to receive the treatment/medical equipment/doctors visit, will often spur them into action. Sometimes, it’ll just make them ask more questions, but questions are better than flat out denial. This was a very helpful tactic when I was trying to get my manual wheelchair approved. I told them I was unable to complete my ADLs and it was affecting my quality of life, and they eventually came around. It’s also important to remember that ADLs are only the most base tasks that you need to live. Driving, working, socializing—those aren’t included in ADLs, and insurance especially will laugh in your face if you try to say you need medical equipment for something like that.)

Lots of doctors, consciously or unconsciously, will judge how you’re actually feeling by your mood in an appointment. I had a pediatric neurologist who couldn’t be convinced that my pain was at an 8 because I would laugh with my mom in the waiting room. Eight months in, I started getting real quiet, not talking, crying when he talked, all that shit, and he was so fucking flummoxed. He was like “what changed?? Are you depressed??” And I had to remind him that I was thirteen with a severe shoulder inure that hurt every time I breathed. Doctors will judge you based on how you look and how you present. It’s horrible, but it’s true. Present to them in the way that represents what they’d expect to see for your symptoms.

Whatever you do, don’t say anything (or send any snappy messages) that might be considered aggressive until you are absolutely, 100% positive you will never ever have to see them again. I’ve had a few doctors that said ridiculously horrible things to me. It’s tempting to send them a message about how shitty they’ve been or how much they’ve hurt you, but it won’t help. Shitty doctors have fragile egos and they don’t like to be challenged. They won’t take this well, and they’ll mark you as attention seeking, emotional, mentally unstable—you name it. When your other doctors call to ask questions about symptoms, etc, they’ll start talking shit, and everything gets complicated. This might sound dramatic to anyone who hasn’t seen it happen, but honestly, the medical system abuses emotion and mental illness to discard patients that aren’t afraid to advocate for themselves, and this is one of the least immoral ways they do it.

Remember that you don’t owe your doctors anything (except basic human decency). If they ask you to do something and you can’t or don’t want to, don’t. My psychiatrist was really fixated on me getting a light box to cure my depression. I did Not want to do that, so I didn’t. Sometimes, your doctors won’t move on to further treatment or tests until you try it, but most of the time you can say, “that’s not something I’m able to do right now. Let’s explore further options,” and they’ll move on.

Remember that learning to advocate for yourself takes years of practice. Just do your best, and try not to blame yourself for the ways you get mistreated. Therapy is the best investment I’ve ever made for this. It’s helped me learn how to advocate and how to process medical trauma.

Medication

For gods sake, take the as needed medication when you have a migraine or if you’re nauseous. Don’t punish yourself.

This might seem like a no brainer, but if you’re traveling and you’re going to take your medication bottles with you, put them in a ziplock bag. They will definitely open in your suitcase, and you’ll have to pick Levothyroxine out of your socks.

If a medication gives you icky side effects, tell your doctor and ask if there’s something that doesn’t do that. For me personally, it’s hard to find medication that works at all, so I often get stuck with things that make me feel like shit. But it doesn’t hurt to ask. Sometimes new medications come out or they dig up old ones.

Some medications come in dissolvable tablets or suppositories. They’re not fun, but if you have trouble swallowing pills, this is a good way to go. Again, communicate with your doctor about these things. I know that there are Scopolamine patches for nausea too. I’ve never used them before, but it might be worth looking into if need easy nausea relief.

All Things Wheelchair

Man, wheelchairs suck, but they’re also amazing. If you find yourself using one, you’ll encounter a steep learning curve.

If you’re not super buff when you first start, it’ll seem impossible to go up even a slight incline. Your arms will get stronger the more you move around, but it might take time. I eventually bit the bullet and started doing personal training. I’m lucky that I can afford it, and I know it’s not an option for everyone, but if you can, find a trainer who won’t saying anything shitty and who’s willing to accommodate. I worked with a queer-owned gym to find someone I was comfortable with. We do upper body strength training, and it gives me a chance to move my body more often. I still can’t go up big hills, but I feel infinitely more mobile. Give yourself time to adjust to the new strain on your body, even if you don’t do training for it. You’ll be sore in the beginning. Ice and heat will be your friends after long days. If your wrists start hurting a lot, you’re not wheeling correctly, and you should ask your doctor for a referral to PT or OT. Oh and your hands will be fucked for the first few weeks. I bought special wheelchair gloves to try to combat this, but it just made it harder for me to maneuver. Now I only use the gloves if it’s cold, if I’m going down hills, or in the rain/snow. (But seriously, if you’re going down steep hills, use traction gloves.)

Learn to pop a wheelie as soon as possible. It’s such a helpful skill. If you get good enough, you’ll be able to get up over single steps and traverse shitty pavement.

If your wheelchair has a cushion, then it has a cushion cover. Wash it.

Time for the grossest part: cutting hair out of your caster wheels. I hate this. I hate it so much. It’s fucking disgusting, but you have to do it. It’ll fuck up your wheels and make it harder to maneuver. Also it’s just gross to have all that nasty hair hanging out by your feet. Get yourself a long pair of thin scissors and cut all that hair out every week or every two weeks. If you don’t have long hair or live with people who have long hair, then you might be able to wait longer. You should also sanitize your hand rims while you’re at it. Hand sanitizer or Clorox wipes are great for this.

You’ll notice that it’s fucking impossible to carry shopping baskets or suitcases if you use a manual chair. Some people try to balance them on their laps or wedge them onto their footplates, but it’s pretty precarious. I got these weird peg things that attach to the frame. You can place a basket or your bag on it and still keep your hands free. Here’s the link for the ones I got, but it depends on your make and model, so do some research and call some different companies before buying anything. Also, make sure to measure the distance between the two sides of your frame to make sure a basket will be able to balance on the two pegs. Your frame might be too wide for this. Mine is, but I bought a special basket to take to the store that’s wide enough to reach across.

Lots of people will offer to push you. Some won’t even offer; they’ll just grab on and take you in whatever direction. It’s insanely invasive and dehumanizing. Don’t be afraid to put on your breaks if someone does this. I can stand and take small steps, so sometime I just get up and stare at them. You can also buy covers for your handles that have spikes so people can’t grab them. I know some wheelchair users who like it when people offer to push them. That’s good too! Take the help if you want it. Just remember to prioritize your safety and comfort. I had a big debate with another disabled person about whether it was infantilizing for someone to offer to hold open the door for us. I’m firmly on the side that they can offer, and I can say no, and they can listen, and then we can both appreciate the moment of shared humanity between us. They did not agree. Disabled people fight and disagree all the time because we’re not all carbon copies of each other. That’s okay! Just be respectful.

Getting a customized manual wheelchair was one of the single most stressful things I had to deal with. Insurance doesn’t like to pay for them because it’s about 3-12k, depending on the specifications and add-ons. But it’s also been the most liberating thing I’ve done since getting my mobility stripped from me. I’m not sure how it works for everyone, but I got a referral from my doctor to a custom wheelchair company. From there, they took measurements, discussed needs, and showed me different models. It’s going to be really really difficult to know what you want the first time. There’s a lot of different brands and customizations, so do your research and talk in depth with whoever’s making your chair. Ultra lite rigid frames are my favorite because they’re usually only 15-40 pounds, and the wheels can come off to make it even lighter. However, rigid frames don’t fold together in the middle like classic manual wheelchairs that you might find at a hospital or get at a rental company. They can be difficult to fit in the backseat of a car or in some trunks, so make sure to measure any cars you ride in regularly. Some people prefer to have tilted wheels so they can turn easier. Some people don’t want anything to do with that. Depending on your mobility and the people in your life, you might choose not to add push handles to your chair. I added some to mine because I often get dizzy, and it’s helpful to have handles in case I need someone to push me out of the crosswalk or into the shade. People who are highly independent and extremely strong might not want push handles because they won’t need help up steep hills. I like my handles a lot; however, my chair back is shorter than a standard wheelchair because it helps increase range of motion when I’m wheeling, so my push handles are lower than normal, and anyone who wants to push me has to hunch a bit to reach. Again, do your research and talk to your rep before making final decisions. Some companies will let you test out the chairs they have on hand to see what you like. It’s important to work with a wheelchair company you really like because you’re literally putting you life in their hands. I’ve had better luck with smaller, locally-owned companies, but you can’t always get referrals there, and not every town has them. Here’s my tip to you: Numotion sucks ass. Avoid them. My branch of Numotion seems to be an outlier; I’ve had really good experiences with them. But most of the time, its impossible to get ahold of anyone, their hours are few and random, and their customer service reps are rude. But! After you’ve completed your order form—gotten measurements and found customizations—they’ll submit it to insurance. This is the tricky part. I went through four appeals, before I got mine approved. Luckily, I had insurance through my mom’s job, and after the last appeal, her company told the insurance that they had to pay for it. This won’t be the case with everyone. Be diligent with your appeals. Have your doctors write specific, clear letters about why you need it, including information about all the customizations and add-ons. It’s likely that they’ll only pay for the base chair, and you’ll have to pay out of pocket for any extra things. Another note: most insurance companies will only pay for a new chair once every five years (if they approve the first one at all), so be sure that the chair you pick out will work for you for at least the next five and a half years.

I had an advisor in college tell me something devastating once: there is no AAA for wheelchairs. I’d broken a caster wheel and gotten stuck on a university sidewalk in 102 degree heat, and she was telling me about her own experiences getting stranded after one of her tires popped. She’s right; if you’re wheelchair breaks, you’re stuck wherever you are without any backup. Carry your phone with you. Tell your friends or family where you’re going before you leave. Familiarize yourself with the wheelchair repairs shops in your area. Sometimes places like bike shops will be able to help you fix smaller things. I always carry an Allen wrench with me in case I need to take a part off. And don’t worry; you’ll find that if something does go wrong, people are far more willing to help than you’d expect. One of the sculpture professors in the art department found me that day and went back to his workshop to get all his tools. He brought me water and sat in the sun while he tried to fix my wheel, and when he couldn’t, he offered to drive me wherever I needed to go. This man was a tenured professor with a prestigious MFA, and he was running late for a party where he was supposed to be handing out awards. You’ll find lots of good people when things inevitably go to shit.

Going along with the last point, your wheelchair will break, and you will have to send it into the shop to get repairs. If you can, invest in a cheap manual chair that you can use in emergencies. If you live with other people, you can buy a transport chair for cheaper, but you’ll need someone around to push you because it won’t have hand rims.

If you’re new to wheelchair use, give yourself space to feel all the emotions. When I first started, I had been using an office chair(!) to get around. My mom would push me from my bed to the bathroom and then back to bed while we waited to get a rental. I was so relieved when I got my own chair that I pushed everything else down. It took months to allow myself to be sad about all the things I couldn’t do anymore and be angry about all the inaccessible infrastructure that America has. Don’t push it down. Talk to a therapist or find people in the community to discuss it with. (If I choose to talk about my frustrations with friends, I always start with “I need to vent right now, and I’m grateful you’re willing to listen to me, but I’m not looking for any solutions to this at the moment,” or “can you give me some suggestions to work around these things that are frustrating me?” This gives my friends insight into what I need, instead of making them guess. It keeps us both from getting frustrated, and I highly suggest it, especially if you or your friends have trouble navigating social situations/expectations.)

Hand Controls

Hand controls are great option for your car if you’re unable to use your feet to drive. I got mine about a year back, but it was tricky and really confusing at first.

First thing you need to know: you can’t get hand controls without a prescription from a specialist. Usually a certain type of occupational therapist. You can look up driving rehab OTs in your area, but there aren’t many of them, and lots of the time you’ll have to drive several hours to see one. There’s usually a long wait list as well. (And of course, a lot of them don’t take insurance.)

If you’re able to find someone who’s certified, they’ll do an intake appointment and assess your physical abilities and needs. Sometimes, they’ll do the assessment and decide you aren’t fit to use hand controls. This can be for a multitude of reasons, including impaired mental cognition and slow reaction time, issues with hand or arm mobility, or there might be a better way to adapt a car for you. Again, it varies greatly on the person, and I’m not an OT, so I don’t know all the ins and outs. If you pass the assessment, and they view you got to drive with hand controls, you’ll be required to do a certain amount of training where you practice using different equipment. Some OTs will know what you need to use right away, and others will have you try different things out to see what fits best. There’s a lot of types of hand controls and a lot of adaptations that can be done to a car, so it really depends on the person. My training was only about 15 hours (plus independent driving practice), but it’ll depend on whether this is your first time ever driving, if you’ve driven without hand controls before, and if you have any other medical issues that might make it hard for you to adapt. Once you’ve completed the training and received your certificate from the OT, they’ll write a prescription to send to a shop that does specialty car adaptation. Kind of like wheelchairs, the shop you go to is very important. Ask your OT if they have any favorites in the area. Insurance never covers this, and some shops will way overcharge you if you’re not careful. My hand controls were about 3k out of pocket, but it was definitely worth it. It would’ve been a lot more to add other adaptations like a lift or a ramp, but sometimes you can buy used accessible vans for cheaper than adding it to your own car. Something to know: you’re usually able to turn your hand controls on and off. So if your friend needs to borrow your car, or you need to let a mechanic test drive it, you can disable to hand controls and allow someone else to use the foot pedals as normal.

Overall, it’s a very long, very expensive process, so plan ahead and be prepared to wait and pay.

Navigating Raising a Kid with Chronic Illnesses

I don’t have any kids, but my mom was my sole caretaker growing up, and I can offer you some of her thoughts. You have to remember that no matter what age your kid is, chronic illness is an impossible thing for them to deal with, and yet they have to deal with it anyways. Sometimes, there’s no good way to comfort a child who’s in 10/10 pain, or who’s about to undergo a life-altering procedure. All you can do is your best. Communicate. Offer support. Give affection. Make your love unconditional. I was a very angry teenager. I was angry with my mom that she couldn’t fix it, and I was angry with my doctors for the way they treated me. There were days where I would yell and sob and refuse to take my meds, and there where days where I would stare at the wall and not respond to anything. It drove my mom up the wall. She’s used to fixing things, and this was one of those things she couldn’t even help. I know she stills holds a lot of guilt for this, but she shouldn’t. She did her best. You’re doing your best too. You can’t fix everything. That being said, here are her suggestions:

Therapy, therapy, therapy. They might hate it, but some day, they’ll thank you. Remember that not every therapist is right for every patient. If your kid wants to switch to a different therapist, let them. It’s better than them sitting and not speaking the whole session.

Lots of kids with developing rare undiagnosed diseases will go through this vicious cycle where they get a new symptom, get sent to a specialist, get dismissed, and then develop a new symptom and start the process all over again. It’s not easy. My mom was a fan of throwing Pity Parties. Every once in a while, when the grind of it all started making us feel hopeless, she’d take me to the store and say, “pick out snacks and drinks. We’re going to throw a pity party, gorge on sugar, watch Lord of the Rings, feel bad for ourselves, and tomorrow, we’ll dust ourselves off and try again.” It helped. It was good to know that sometimes you can let life feel unfair, and it was even better to know that the next day it would be easier to try again.

A lot of being chronically ill as a kid is getting decisions stripped from you and having unexpected negative experiences. My mom would try to do spontaneous things every once in a while to remind me that not all surprises are bad. Instead of driving straight home after school one Friday, she took me to Starbucks without saying anything. After an MRI, she stopped at an art fair and let me pick out a necklace. We would go to the library after I spent the day in the hospital. Sometimes, she’d call my aunts while I was at school to come over and play card games on the weekends. And she was really big on giving me choices in everything. She never made me agree to new (non-lifesaving) treatment. Ever. If she really wanted me to do it, we’d talk it over and come to an agreement that made us both happy. Sick kids are forced into adulthood early; they know how to make calculated, logical decisions when needed. Let them be a part of their own healthcare. (They should also be given the chance to make rash, stupid decisions that have no bearing on their health.)

Keep track of everything. Doctors, meds, ER visits, PT exercises, diets they’ve tried for GI issues, everything about the surgeries they’ve undergone. Some day, you’ll need it. Or your kid will grow up into a chronically ill adult, and they’ll need it.

Talk to their school counselor about getting a 504 or IEP. Even if they’re not struggling. I was a super academically minded kid; I didn’t struggle to understand new concepts or complete homework correctly. But eventually it became hard for me to attend class and finish assignments. Having an IEP saved me. 504s are a lot easier to get (a lot less paperwork, less testing, less pushback from admin), but they’re not legally binding. If you want something concrete and all-encompassing, go for the IEP. IEPs are also really helpful when trying to get accommodations in college. You can also start with a 504 and switch to an IEP later. While we’re on the subject of school: remember that education is important, but school is not the end all be all of your child’s life. What should matter the most to you is that they end up safe and happy. I didn’t graduate high school; I took a proficiency test my junior year and dropped out. It was the best choice I could’ve made at the time, but it was still tough for my mom. I ended up going to college, and now I have a pretty solid job, but every kid will be different. Their mental and physical health is the most important. School is a huge huge huge stressor. Don’t make it harder for them than it already is.

Dating

God dating sucks enough on its own, but adding in chronic illness and disability just makes it a shit show. I don’t have a lot to offer on this other than you shouldn’t settle for anyone who doesn’t respect you, treat you with love and compassion, and accept every part of you for what it is. People will say rude shit. They’ll be nasty, fetishizing, infantilizing, dismissive. Some won’t be able to put up with all the things that come along with being ill. I sound like a broken record, but find a good therapist who can help you voice your needs and expectations clearly. Remember that you never have to go on a date if you don’t want to. Participate as you see fit. Throw it all out if you want.

I don’t have enough time to go into my tips for intimacy/sex and disability, but I’ll give you the highlights.

Communicate. Make it very clear what you’re able to do, what you’re interested in doing, and what you don’t want.

There are lots of ways to have sex. If you’re both having fun, being safe, and engaging consensually, then you’re doing it right. Don’t let abled bodied people tell you the way it should be done. There are lots of accessibility friendly toys to invest in, too.

As weird as it might sound, don’t be afraid to take breaks. Keep water near by. If you have POTS, keep salt or electrolyte tablets on hand. If you have to stop to vomit or go to the bathroom, don’t let it shame you. Go at your own pace and take care of your body.

Misc

Having seizures on a college campus: Most universities have a policy that if you lose consciousness while on campus, they have to call an ambulance. You are not required to ride in the ambulance. You can decline, and the paramedics will make you sign a form before leaving. If you’re still actively having seizures, then they’ll take you anyways, but you probably won’t be in any shape to try to decline. If you’re having seizures regularly, tell your professors. It’ll freak them the fuck out, so warn them ahead of time. It makes the whole thing a lot less awkward when you collapse in the aisle during a lecture. Related to that: communicate with your professors about all your accommodations and emergency health needs. They really honestly appreciate it when you talk to them about this stuff. Even if they have a big class and don’t remember you, it’s good to send them an email and introduce yourself. Hopefully, you’ve also talked to your college’s Disability Resource Center. If not, go do that. Now. (There’s a whole lot of shit that I have to say about campus accessibility and disability resource centers, but I’m not gonna go into it right now.) Also, wear your medical alert bracelet. I know they suck, but it sucks more for someone to be digging through your pants pocket while you’re seizing to try to find your wallet. And keep your emergency contact info pinned up somewhere in your dorm. I used to put mine on the fridge and point it out to my roommates at the beginning of term. It can take a while for RAs to pull yours up, so it’s best to make sure it’s easily accessible.

Remember that you do not function like a normal person. There is no wrong way to solve one of your problems. If you need to put a stool in your bathroom to sit at while you brush your teeth, do it. I got an extra tall stool to sit at while I cook at the stove because my wheelchair is too short. (Cooking in a wheelchair is another thing I could talk about forever.) If you need to wear a sleep mask on the bus because the light makes your migraine worse, do it. People can look at you funny all they want. Like I said, I rolled around my house in an office chair while I waited for a rental wheelchair. What I’m trying to say is find things that work and implement them, even if they’re non traditional.

Here’s what I pack in my bag for an ER visit: headphones, phone charger, book, zofran, Naproxen, water bottle, wallet with cash, socks, and sleep mask to block out the waiting room lights. If I’m expecting to be admitted, then I’ll pack more, but I try to keep it light if it’s just triage and a visit with the ER doctor. Sometimes I’ll stuff a granola bar or some almonds in there too.

My biggest tip for surviving hospital stays is to get out of your room (if possible). Go on walks around the unit. Some hospitals have little courtyards patients can sit in. If you’re in peds, go visit the rec room, even if it’s awkward. Their activities are usually meant for the younger kids, but it can be fun to connect with other people your age, and you’ll thank yourself later when you’re stuck in bed at 3am. Also, tell your friends to come visit you. Not everyone will be able to, but most people are happy to come hang out for an hour or two. It’ll help; I promise.

Clean your room every few weeks. Dear god, clean your room. I have trouble with executive functioning and finding energy to do housekeeping type stuff, but I get more depressed when my room is gross. So clean your room. Especially if you have hypersomnia/sleep excessively.

Don’t force yourself to use a pill organizer. I know everyone says it makes it easier, but I get overwhelmed when I have to refill it, and then I just don’t end up taking my meds. If it doesn’t work for you, don’t do it. If it does, then do it!

Don’t buy the self help books your therapist recommends unless you’re actually interested in reading them. It’ll just sit on your shelf and make you feel guilty for not being good enough.

Mental illness is tightly bound to physical illness. Try to be an active listener in your body. Sometimes, when I’ve been feeling really nauseous, my PSTD symptoms will get triggered over nothing, and it’ll frustrate the fuck out of me because it seems like it’s happening over nothing. I try to track when my emotional state is worse to see if it’s correlated to my physical symptoms. This helps curb the frustration and guilt. Sometimes it makes me dissociate more. It’s a balancing act. Just do your best.

Hobbies are so so so important. Make sure to give yourself time to work on them! And there are a million ways to adapt the activities you love if you’re having trouble, so don’t afraid to do some research. I know they have crochet hook grips for people with arthritis or loose grips, and there are super intense magnifying glasses for people who like to cross stitch and are having trouble seeing the tiny ass holes. I have a color blind friend who sends us pictures of paint to see if it’s the shade he wants. Very occasionally, you’ll come to the conclusion that there’s a hobby you can’t adapt. Let yourself be sad. I can’t hike anymore and it sucks. I can’t go tide-pooling either, and its not like if I just work really hard I’ll be able to do it some day. Life is shit, and sometimes you have to let things go. Be angry, be sad, tell people to fuck off if they try to turn you into inspiration porn, but also remember that there are lots of other cool things out there to try.

Going along with the hobby thing: take the time to learn ASL if you’re having trouble with your hearing or if you often go nonverbal. One of my friends had to get hearing aids last year, and we offered to learn with them, but they were hesitant because it feels like a non necessity to them. Something selfish that would take up all our time. If you think it’ll help, you should grant yourself the time to learn. Capitalism makes us think that we shouldn’t engage in activities unless we gain money or power from them, but that mindset will kill you. Your life will be infinitely easier if you learn ASL online with your partner or friends or siblings.

Look up Spoon Theory. It’s not a helpful metaphor for everyone, but most people in the community talk about it, so it’s good to be familiar with it.

Don’t be afraid to go out and find community! Find support groups, look up wheelchair sports if you’re into getting sweaty, brave the awkwardness of starting conversations with other patients in the clinic. I’m wholly and completely of the idea that humans are innately good. There are lots of interesting chronically ill/disabled people who’re looking for connection. Insurance companies and other medical entities rely on us feeling isolated, alone, and uniformed to continue making money and hold power. It’s important that we share with and support each other.

I know a lot of this is basic stuff, but it’s helpful to have reminders, and if you’re new to the whole song and dance, then it’s nice to get a sneak peak. There are a million things I didn’t get to, but this was what was on the top of my brain.

Also, I’m not the collective voice of every chronically ill person in the world. My experiences are not yours and they’re not everyone else’s. What works for me, might not work for you. Be kind.

#thanks to @thenarrativefoil for reminding me that we need to share with each other!!#if you have any suggestions for dealing with gastroparesis please hmu #I’m still waiting for my gastric emptying scan but I’d like to try out some of y’all’s tips #hopefully some of this is helpful to someone #chronic illness #chronic pain #disability #seizures #nausea #wheelchair user #ptsd #mental health #hand controls #medical insurance companies suck #therapy #so much talk of therapy #spoonie #if this is helpful to anyone I’ll make another

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transgender-chiroptera · 4 months

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i return to you today with some... not-so-great bat photos. peaches was not delighted by me having to take a peek at her wing, as well as unfortunately she is on her period so shes not the happiest of creatures :( however she is as always eating and performing beautifully and is as darling as ever :)

Aww Peaches we've all been there buddy, I feel ya..... It's so cruel that bats have gotta deal with periods too. But it's good to hear that she's still eating well and is up to her regular activities!! She is an absolute CUTIE, I love the blurred wing in the second one, little madam was FLAPPING!!!!!!!

#Thank you so much as ever for sharing her :3 She's such a delight!!#also I realise now that we very much haven't 'all been there' but. Ive been there so i understand her pain that is what i meant sdlkjdslk #Pallid bat #ask #c0rpsefl0wers #bat #microbat

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buck2eddie · 9 months

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fic moodboard inspired by into the fire by @gayhoediaz

Buck thinks he could be drenched in gasoline and lit on fire, and it wouldn’t make a difference - he wouldn’t know - he’s already there; they’re it. Their bodies together. Them together.

After all, this is what a fire is - it’s what a fire does. It doesn’t matter how controlled it is, or how contained - a fireplace, or even a harmless, small candle flame - all it takes is one mistake - one misstep - and it devours everything in its path with ruthless enthusiasm.

#reread this one today and was just as good as the first time and I really wanted to make something for it!!!#tried to fit as many stuff as i could hope i managed to get the vibes correctly #if you haven't read this fic look away from the next tags ok great #the elevator kiss. chris's book and what happened after. bobby at the hospital. buck and natalia's talk in the jeep.#buck going over to hen's at night (with the tea). and eddie's and buck's talk at the end #and the do better line with emerald green felt like it was a must #just incredible fic mwah hits all the painful spots #would read it ten more times #so yeah nie thank you for writing this fic and sharing it with us im very grateful for it <3 #buddie #fic moodboard #m*mbs #buddie fic

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maingh0st · 10 days

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Are you reading the old or new version of tithe? How you like it so far?

oh I actually was unaware there were different versions! if anyone sees this and knows the differences, I’d love a primer. but I assume mine is the new version—it’s the newer cover.

I’m about 70 pages in, and as a disclaimer, I’m mostly paying attention to holly’s craft (I like learning!) so most of my notes so far are related to that. but some random thoughts:

breakneck pacing. the first chapter is so cursory that it’s odd. if I had to guess, I’d assume Holly does not struggle to move plots along, but does have to go back & create space for moments & characters to breathe (it seems like a skill she’s grown in since tithe)

her talent for capturing the feel of a place can definitely be seen in this book, even through some other more odd writing choices. like there’s an old, dilapidated coastal town, and I fully felt like I was there based on the sensory details she decided to highlight. I’ve also made note of other turns of phrases that I’ve found lovely—like at one point, there’s a line about the stormbright sky painting the woods silver. simple but beautiful. she’s just great with visual treats like that

I have no strong feelings about the characters yet—obviously I’m interested in Roiben, and I’m inclined to like Kaye, but that’s more a symptom of having read tfota. I don’t know how differently I’d feel if I’d picked this book up first

I’m excited to learn more about other courts. also, just getting more of a feel for how the fey work is cool—like the iron-tipped arrow, kaye’s magic, etc.

The tone of this one is wildly different than tfota lmao. I think @thewinecoloredsea called it fairy Euphoria or something like that and I see it now

KISS MY ASS, RATH ROIBEN RYE

#this is probably more than you asked for #but still - thanks for giving me the chance to share my thoughts!#I was honestly kind of prepared to slog through this but it’s definitely an enjoyable read #(I tried to revisit stiefvater’s book lament recently for similar reasons -#i admire her craft and thought it would be cool to study her growth -#but omg that book is painful 🙃 I gave up)#ask tag #anon #tfota #modern faerie tales #rath roiben rye #kaye fierch #tithe #Holly black #reading the modern faerie tales #reading tithe

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