#thank you for reminding me of my pain
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my two cents on Husn by Anuv Jain:
it starts right in the middle of the feels. you start by unwrapping all the packed sadness you've kept on the shelf. and as it progresses, you can feel that it stops being a song, it really brings you to this collective place we all go to when we're sad.
it's like my friend is telling me their story and i feel how they think they're okay and then they say "Lagta mujhe, mere naam ka, zikr kahi bhi hoga nahi" and the facade breaks. they realise they'll not even be remembered and it's not okay. they've been completely broken to the point of giving up but they can't.
"Meri aankho mein dekho" (😭) are the exact words we've felt and said to someone and desperately wished for. it's a cry for love, and if you haven't already started crying, you'll be bawling by now. this is where i broke. the sheer raw feels hit so bad. the amount of care i have inside me just floods out because he's broken all my nicely made dressing.
And then suddenly they just come out of it, "Dekho dekho kaise kheechi lakeere" and "Main iss daud mein nahi". Haha, right, the dissociation begins and you try to cover the wound until next time (which mostly is immediately afterwards because this song is on loop)
yes I'm a masochist
#anuv jain#husn#thank you for reminding me of my pain#not like i have enough on my plate#can we also get this boy a blanket#i wonder how modern poets are like#because damn#spotify#being desi
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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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❄
#“wait lemme fix it I don't want you to freeze”#“how are u not cold?”#“oh it's the love that's keeping me warm”#“jesus Tex that was too sweet even for you”#“what can I say I am the romantic type”#“I'd prefer you to say nothing”#it's been sitting in my drafts for a while so thanks cata for reminding me#i love them being silly#patrols can be boring#i really wanna continue with their winter shenanigans but ive been sick and its painful to breathe#tess servopoulos#joel miller#joel x tess#tess lives#tessjoel#tess tlou#joel tlou
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YESSSSS my Halloween order from @waywardstation came in!! Picked up some charms for a pair of friends to take advantage of the discount, oh these are such cute charms, I'm so glad I managed to have a lil spare change for these!! ;w; The bat clips are such a lovely little touch, and these definitely feel like sturdy lil guys!
And omg, all the little bonuses were such a pleasant surprise!! (Editor's note: the joltik plushie was not included in the bonuses lol I've had that for like 7 years.) The joltik clip is also so cuuuute, I'm tempted to super glue a magnet onto it so I can put it around my desk :3c
#waywardstation#look if you know me you know me getting a werewolf ingo charm is not a surprising at all. made for me. need to figure out if this is going#on my phone or switch controller hehehehe#anyways this was such a pleasant surprise to find after having to take a pain nap#(periods on t are apparently extra rough. and my periods have already been rough. ough.)#also torn between putting the stickers on my computer tower or my sewing machine... i like both options fghj#... this is reminding me i should make a post abuot being open for sewing commissions so i can save up more cash#anyways. o/ thank you wayward for the lovely package may your shop sell well
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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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I think I’m over Sah leaving and then
BOOM
I open Instagram during a lecture and get hit with cast photos that break my heart all over again </3
#thank you arin’s instagram post for reigniting the pain#i swear i am getting to making my post about barriers#a pigeon just flew at me the green zone of new street is birmingham’s trenches#everytime i see a picture of arin and milo hugging i am reminded that sah and teddy only ever hugged once (the polyfailure hug in 37x37)#bbc casualty#sah brockner
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i do love my family very dearly but the internalized ableism the men in here struggle with is. so much
#marzi speaks#it’s worse with my brother but he’s doing more to actively work on improving that#my dad however has very subtle internalized ableism that i don’t think he recognizes is there#which is. fun#like earlier. either last night or this morning i don’t remember#i was talking to him about how while ideologically i have nothing against accepting needing help and things like that#in practice it’s very challenging to adjust to being disabled even temporarily. and that if i do end up with a diagnosis that’s gonna be#a lot to handle. both mentally and just with the lifestyle changes i’ll have to make#and he makes a bit of a face and goes ‘i wouldn’t quite call you disabled. i’d just say ‘ill’’#and i just sort of look at him. and i blink. and i go ‘i am physically Un-Able to do things i am normally able to do’#‘i can’t walk long distances at all. i can’t sit in chairs for too long without causing pain’#‘i’ve spent the last 24 hours staring longingly at my computer because i want to draw but am currently Not Able To’#he didn’t argue with me but i can tell he was still unnerved by the idea of picturing his daughter as disabled#also like . illness and disability are not mutually exclusive? several disabilities are or involve chronic illness#i shouldn’t be surprised though. i mentioned considering starting lexapro#and he went on his ‘you’re an adult and it’s your choice in the end but i wouldn’t recommend it’ spiel#(he’s anti-psychiatry bc he doesn’t like the idea of breaking the brain down into smth so purely physical)#(and also doesn’t like the idea of someone being dependent on pills their whole life)#(which i’m giving him some slack on rn bc he is a just-got-clean recovering opoid addict. so)#(btw before any of you say SHIT abt my dad he took his pills legally prescribed for chronic pain and did not abuse them)#(and even if he DID that would give nobody a right to make a moral judgement on him. ok cool)#i then reminded him that my mom takes anti-anxiety meds and they really really helped her#and he just goes ‘true.’ and moves on#king u got some shit to unpack#it’s fine if u didn’t want to start antidepressants when it was recommended to you meds aren’t for everyone#but like come on now. u don’t gotta be so fundamentally against it when literally ur own wife who you adore takes psych meds#anywho my mom handled me making the disability comment much better. she was basically just like ‘ur fear is totally understandable’#‘u have a good support system we’ll help you through it’#which. thanks mom 👍 that was very kind of her to say
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you were the 100th comment on rough surfaces 🫶🫶
LETS GOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!❤️❤️❤️
let this be my official rec of Rough Surfaces, then.
#everyone read rough surfaces no reason not to read rough surfaces i almost reread all of rough surfaces before that comment#like i highly highly highly highly doubt anyone that follows me on here isnt also reading it but#in case you needed a nudge or a reminder#lol! we love pain on this blog dont we folks!!!!! and no one does it like a#this is the biggest accomplishment in my life thank you#other peoples fic
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on one hand I am very glad that ketamine therapy has been helpful for my severe depression and anxiety and ptsd and whatever else is going on up there, and I’m grateful that it’s available to me as part of my treatment plan
on the other hand I’m not a huge fan of the payment for that help being a 50/50 chance every time of having a bad trip that unlocks some deep scary part of my psyche and then having to address all of that in therapy until the next trip
#starlight personal#ketamine has saved my life and also scares the fuck out of me tbh#like I went into this trip being all ‘love and kindness gotta be nice to myself’ and it went ‘yes BUT -‘#and shoved me off a cliff into years and years of repressed existential anxiety and reminded me that I’ve had that since I was Very Small#bro please I just want to not off myself I don’t need to be unpacking deep childhood trauma rn I’m trying to buy a house#how am I supposed to buy a house when I now have to grapple with Deep Pain being brought to light#I was going to talk about house anxiety in therapy this week but that has now been derailed for -#I Am Terrified of the Universe and Always Have Been and Do Not Know How to Cope With This When It’s Not Repressed#and I do truly believe if it came up in treatment that it means it’s time to deal with it and learn to handle it#but like…….. I would’ve liked to be asked#not just thrown into the scariest psychedelic trip of my life and then left to pick up the pieces#anyway this is all to say that I’m once again cursing my genetics for not letting SSRIs work and leaving me with psychedelic woo-woo shit#like what do you mean I can’t take a pill and ignore some of this deeper shit what do you MEAN I have to face it#ketamine is very I Will Shine a Light on the Things You Have Hidden Whether You like It Or Not For Your Own Good#thank you I guess but right now I’m a bit grumpy about it#on the brightside I am hopefully going to be less depressed for the next two months until it wears off again so we love that!!!#hahahaaaaaaaaaa it’s fine we’ll be fine this will be good for me in the long run#what’s peace like I wonder I’ve certainly never known it
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"Have you considered that it might not be a trapped nerve and could be your degenerative disc disease?"- My Mother
No I never considered it because I don't want to consider it
Why would you do this to me 🫠 [melting face emoji]
#all signs are pointing a trapped nerve so I'm hoping#but thank you mother for reminding me of the disgrace that is my back /s#disability#chronic pain#degenerative disc disease
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"You can pet him if you want", it's a gesture toward the bright orange—almost fiery red—cat resting in their arms, looking rather imposing and disinterested. Although, Akira smiles, somewhat weary, an assurance that it truly would be fine. "He likes being praised as well. Don't you, Mimi?" to which said cat yawns, causing Akira to laugh in response. "I...think being close to animals can help the soul, especially now", after so much was lost and so much was gained. (EINAR. POSTTYPE0. not sakitty but. other kitty
He wouldn't be here, in Rubrum of all places if it weren't for his wife. Finding the remining of her family and friends is his new mission. He's no longer a captain in the Milites Army--heck, there is no longer Army to go back to, and good riddance if he can say that.
Would things be different had more people objected to Cid's plans? Who knows, and nothing can be gained with wishful thinking. What happened, had happened. People are still grieving their lost ones. No amount of apologizing he can do to ease a mother's pain or a child's for losing their family. Their blood is ...indeed on his hands. That's why he will do whatever he can to move on. His left hand reached to squeeze on his now unfunctional right magetik arm. So much had happened and he is not one bit regretful that he lost the use of his right arm. A small price, yes? perhaps...
This young man is familiar, he had seen him before--Rubram soldier? Mm.. no. He can't recall his position but he knows he was probably the only one pulling the cadets' bodies out of the rubble even when they are dead and no longer able to remember them. It struck something in the captain's heart to see that. To defy that fate the crystals set upon them--forget the dead, don't be dragged by the sadness. Yet, this guy was risking his life for ...the dead, too. How bizarre. At least, Einar is grateful that a gentle soul managed to survive this hellscape.
Though what initially made him come to a stop was not the young man, but his companion. Animals because of the war fled away from cities so it was rare to see them back to where people are. The cute feline definitely won his heart instantly--any cat would. So, when the offer to pet it was available, he wouldn't say no to this chance.
" . . . Alright," Einar took a step forward, leaning to reach his left hand towards the majestic looking feline. At first, he was hesitant. Not because he was scared of it, he was scared for it. The foolishness and greed of humans what made this little poor guy homeless. It does not take a genius to see that it belonged to someone who took good care of it.
Fingers carefully touching the cat then opt to scratch its head softly before he eased in to stroke its fine fur. Yeah, this is therapeutic alright. He missed Vitalis now. The white cat had to stay with his uncle until they finish their business her in Rubrum.
"True ..." he voice trailed off in thoughts. If only ...
"Mimi...is it? Is it your cat?" now a soft smile finally managed to curl his lips. "He is indeed a fine cat," popping its nose.
mmmmmmmmmmmmmmmmm pain. | @flovverworks
#ic.| einar#flovverworks#[rips my hair ..hair by hair...#[this is...#[attack on me and ein#[POSTGAME OF ALL ......................AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA#[IM IN PIECES.#[HELP ME CRYS--FUCK YOU CRYSTAL#[HELP ME KURAPAPA#[WOO MEE THE PAAAAIN AD SUFFERING#[aslo the caaaaaaaaaaaaaaat#[WHY IT REMINDS ME OF PEACE FROM MY///S///CLAS///HUNTERS WE///BTOON#[thanks for pain and cuteness
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at what point do the masses realise that this is soul crushing
#j talks.#to delete#1000 notes and NOT EVEN 90 REBLOGS 😭#i have like 5 things that im nearly finished writing that i literally can’t see the point in wrapping up to post 💀#this app is a disaster rn. it really is#and these are just the ones that crossed 1k#they’re all just as rough as this i promise u#don’t get me wrong im so glad people are reading my shit n enjoying it#and im grateful for any crumb of interaction#but these ratios. are agonising. genuinely painful to look at#(friendly reminder to REBLOG THINGS YOU ENJOY OR PLEASE PLEASE LEAVE FEEDBACK IF YOU LIKED SOMETHING)#(THANKS<3)
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#edit: thank you to the one’s reminding me what stream this is from!!! i remember now!! this was drawn by techno!!!#i miss jackbox streams. bc of my job i had. i always had to watch the vods. i watched the vod of this one during my developmental psych clas#queued jan. 5th 2023#gnf#georgenotfound#404blr#i also wanna say thank you for all the love recently on all my blogs. i’ve been in some terrible pain for the past week now and seeing the#little notes you leave in the tags and whatnot has made me smile. i’m finally starting to feel better so i hope i can finally get back to#making cool post. n e ways. thank you. i know this may seem dumb but idk. i get a lot of happiness from just one like. i’m just a simple boy
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Heyoo^^
Just wanted to let you know I absolutely LOVE your Nicki-finds-Armand-after-his-suicide-attempt AU. Their interactions are hilariously macabre and your Nicki voice is one of the best I have ever red. Yeah, just wanted you to know:)
Thank you so much for saying so!
Nicolas was one of the characters that I very much latched onto when I very first read the books - in fact, Lestat/Nicki was my first ship before I read QOTD and I always found the lack of utilisation of him in fandom really disheartening. I even got my hopes up when Lestat couldn't find him in Memnoch but so sad that he's one of the only constants to remain dead. I understand that's part of the tragedy of him, but I guess I thought if the others from the era get their shot at a life after, he ought to as well.
Trying to balance Nicki's difficulties - Lestat saying joy was hard for him is such a sucker punch because of how frequently in TVL Lestat draws lines between Nicki running his mouth or making a show compared to genuine feeling and how he can see the difference in his face - while showing that I suspect some of the worst of his early vampire mania came from the absolute trauma conga line that preceeded his being made into one is not the easiest, but I hope I'm managing.
I think once he got past his own sense of betrayal and managed to settle himself with the trauma if not deal with it, it wouldn't be all that different to Armand which makes their interactions fascinating to me. They are both dealing with a percieved sense of betrayal and their world view being thrust upside down at the same time and I think Armand did the best he could given the state he was in, but they deserved a chance to rebuild. Especially given Nicki's known for being acerbic and not holding back when I think Armand needs a sense of harshness because the softness, the pity, the compassion of the others is just not something he can deal with at that point. He's too raw.
I do have parts of the next bit written but I want to get it right because Nicki meeting Louis has been something I've wanted to do a for a long time.
This is also a reminder that I really need to give that AU a name now there's a few things in it.
#i think there is something of a nicki and armand parallel too because armand is said to have a terrible coldness in him that never warms#no matter how hard he tries#and in nicki it's just this sucking black hole of despair and he's spent most of his life circling that drain#there are so few things that make him happy and some of them also make him angry or hurt or a lot of other complex emotions#armand especially around tva is numb to his own emotions for the most part but recognising his road and his memories#nicki on the other hand at least how i do him for this is basically subsisting on emotion he's using it to fuel himself#they're armour and food because thinking logically about it is painful#it's two different ways not to feel your feelings but to intellectualise them instead#so it makes perfect sense of this to be the time for them to meet#(this au is not nicki alone but i haven't gotten to bianca yet even though I will)#(ngl part of it got inspired by good omens which is one of my favourite books so when the series came back it reminded me)#thank you again for the ask and i'm sorry for the extreme rambling#you start me on nicki and i don't shut up#answered#this-writer-needs-coffee#vc#tw: suidice
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..
#praying friends—say a prayer for me when you think of it maybe?#I’m just… trying to work through a whole lot of things that are on my mind lately#and I am quite prone to fear and anxiety and worrying over things that I really should hand to God and relinquish all hold on myself#I’ve got some medical concerns happening lately (weird aches and pains. probably nothing possibly something minor)#and that’s certainly exacerbating the situation#I just… I want peace. and rest. and trust. no more fear and worry and confusion and shame.#and I really need someone to discuss all of this with. I think maybe that would help.#and I just need God to send me someone#someone who can help me understand everything clearly again and remind me of what I already know to be true#thinking of talking to my pastor about it but he’s very busy and I’m not especially close to him so I’m not 100% sure how to approach it#anyway. yes. prayers plz.#and thank you all for being my friends. I love you all. this website and the people on it means so much to me. <3#delete later
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I wrote a poem
"This won't make you happy"
That's what people say when I confess
Well I know they think they're helping
But it doesn't ease my distress
This won't make me happy,
Don't you think I knew that at the start?
The goal was never to be happy,
Just to not fall apart
A gravely injured animal
Does not have happiness on its mind
And in its desperation
Will take any escape it finds
"Things will get better"
That's something I hear all the time
But it's biased information
Even if its not quite a lie
Things will always change-
That's the version I believe
But knowing things change for the worse
It's not much of a reprieve
Hope is a fickle thing
Like a shape shifting beast
It's both beautiful and ugly
Depending on which side you see
Hope is everything you have
When you've got nothing left
But with just one thing worth fighting for
Can be a flame burning in your chest
I was born with this restless pain
But introduced to something new
There are few pains greater
Than finally having something to lose
#thank you for coming to my ted talk (vent art) lol#if you cant guess this poem is about the frustration of being told your unhealthy coping mechanisms wont make you happy#when you dont even remember what happiness felt like#its about the frustration of people who dont understand. people who say that it gets better without knowing what theyre talking about#or even questioning why they believe that (spoiler: its privelege and personal experience. i know it comes from a kind place though)#or i suppose sometimes it comes from other people who are pain repeatimg what they were told#but the point is that sometimes the good things in my life are the most painful#the constant reminders that i could lose something i never knew i wanted or needed this much before#the reminder of just how much i care and the fact that i can no longer simply give up#the knowledge that i could quit at anytime was what made life bearable until now. there was no meaning to me staying alive#now i have to fight with myself feeling guilty and selfish for even struggling with the desire to give up still#anyway. lots of thoughts
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