#< for nausea talk
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Also nausea update I think its basically gone đ„ł just say no to puking, kids, it works
#if id really needed it there was a bin bag on the bus pretty close by#but like it was one of those buses w stairs in the middle that go down to the toilet that the drivers get pissed at you for using#and the bag was like facing the steps#so not only would bolting to it have brought everyones attention to me puking (HORRIFIC concept)#i would have had to maintain perfect balance while puking lest i be thrown down the fucking stairs!!!!#oh well. alls well that ends well.#i had my chicken fillet roll i did my shopping at boots and i have like an hour until my appointment#which'll take liiike 15-20 mins to walk to. so ive oodles of time to just sit on this bench and chill :)#life is so beautiful#i should book my bus ticket back actually. will do that#still so pissed that they raised the price by 50c. you were supposed to be the peoples champion!!!!!#also im taking my handbag off to add to my butch swag. not that my handbag isnt hashtag manly#i like it but yknow. appearances important ^_^ < currently wearing khaki shorts. tesco button-up. inside-out fluffy socks. scruffy runners#speaking of butch actually an androgynous person in a casual black suit just walked past đ... hiiiiiii#emeto#< for nausea talk
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i told you. i'm fine
#world's normalest most mentally stable perfectly ok guy!#remember that line in the og where he's talking to yuffie on the highwind#and she asks how he deals with the motion sickness#and cloud says 'oh yeah the trick is to be constantly so stressed out to the point of having a heart attack. it cancels out the nausea lol'#yeah. he's speaking from experience :)#ffvii#cloud strife#my art <3
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met someone today who was born in 2006. please stay safe out there it could happen to anyone
#text#IM KIDDING they were very nice#insane to talk to someone younger than my baby brother though#its like ocd exposure therapy... <- JOKE JOKE JOKE I CAN RECLAIM#in 2020 (when i was 17) i worried myself to the point of physical nausea bc i had online friends who were 16 Like the fact that i can just#hang out with someone even though they were born in 2006 now is crazyyyy
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maybe part of the reason i crave intimacy so much is that chronic pain would probably be slightly more bearable if i at least had someone to cuddle through it
instead i'm lying in the dark with a migraine and nausea clutching my pillow almost in tears begging for it to stop
man. i would really love a hug right now. no wonder i'm so desperate for physical affection. my body feels so bad it's just looking for something good.
and honestly. my mind is looking for something good too
#elliot talks#chronic illness#chronic pain#chronically ill#chronic migraine#migraine#nausea#idk#disability#disabled#i'm the kind of human wreckage that you love#on love#on intimacy
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Being a James potter girlie but not a jegulus girlie is true pain bc for every post on the jp tag I like there are ten posts blocked out bc of the jegulus tagđ
#also blocked poly!marauders bc I couldnât handle the nausea I got seeing that#lilly talks#james potter#anti jegulus
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always fun to see people confidently say sth they think is universal when it absolutely isnt "no one wants to play a game and look at an old hag all the time" I would LOVE to play an old hag actually; having to look at vacuum sealed body suits on the most blandest pretty hot girl that walks in the most unhinged way possible to draw attention to her ass while she makes cutesy moaning sounds everytime she gets vaguely hurt on the other hand physically hurts me
#ganondoodles talks#random#yeas i saw someone actually say that#yes im rambling about it here bc i dont need 400 people in a livestream going after me#bc i find certain industry standards outright nausea inducing by how overdone and boring it is#and how much of a non problem that is to the majority of people#once you start paying attention to it you cant unsee it- ever realize that in 99% of games there is not a single fat character???
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guys anti depressants are crazy. like yeah i dont want to kill myself but why canât i stop shaking my leg and why can i hear colours?
#awfc#shit talking#talking shit again who guessed it#shite#sertraline#also the nausea is no joke#antidepressants#mania#someone sedate me#leah williamson#awfc series#awfc x you#awfc x reader#ruâs writing#rgrambles!#beth mead#alessia russo#england#arsenal wfc#woso fanfic#lucy bronze
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Iâve 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 Iâve realized that as a freakishly avid community enthusiast, Iâve been falling down on the job. So, I present
Wellplacedbananaâs 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? Hereâs 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 fastâbeeping 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. Donât worry too much about bringing a water bottle because theyâll 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 youâre not hydrated and they canât find a vein, theyâll call in the ultrasound tech, and theyâll bring the longest IV needle youâve ever seen. It hurts. Drink water.
Bring a book or your Switch or something else to entertain you, but donât expect to actually do it. I tried bringing papers to edit the first time because I was like âOh itâs an hour and a half of uninterrupted free time. I can get so much done!â 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 donât have an allergic reaction, so factor that into your time too.
If youâre in a pod with other patients whoâre friendly and if you feel up to it, donât 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 donât want to interact with anyone, snap on those headphones and block everything out. The nurses will get your attention if they need you. Donât worry about staying lucid. Your job is to get the infusion and do whatâs 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 youâre at a hospital. Also the medication and the smells in the unit always make me nauseous, so itâs 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 youâre there. I have to go every three months, so I schedule the next one while Iâm 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 canât do it, theyâll tell you. Theyâd rather have you ask and have to say no, then you be uncomfortable. Donât 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 theyâre refusing to acknowledge one of your symptoms is a problem (wonât order tests, wonât refer you out, wonât ask any questions), tell them itâs 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 youâre having severe joint paint, say itâs affecting youâre ability to shower and dress in the morning. If you have intense fatigue, say youâre 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 wonât always work, but itâs 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, itâll 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. Itâs also important to remember that ADLs are only the most base tasks that you need to live. Driving, working, socializingâthose arenât 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 youâre actually feeling by your mood in an appointment. I had a pediatric neurologist who couldnât 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 âwhat changed?? Are you depressed??â 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. Itâs horrible, but itâs true. Present to them in the way that represents what theyâd expect to see for your symptoms.
Whatever you do, donât 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. Iâve had a few doctors that said ridiculously horrible things to me. Itâs tempting to send them a message about how shitty theyâve been or how much theyâve hurt you, but it wonât help. Shitty doctors have fragile egos and they donât like to be challenged. They wonât take this well, and theyâll mark you as attention seeking, emotional, mentally unstableâyou name it. When your other doctors call to ask questions about symptoms, etc, theyâll start talking shit, and everything gets complicated. This might sound dramatic to anyone who hasnât seen it happen, but honestly, the medical system abuses emotion and mental illness to discard patients that arenât afraid to advocate for themselves, and this is one of the least immoral ways they do it.
Remember that you donât owe your doctors anything (except basic human decency). If they ask you to do something and you canât or donât want to, donât. My psychiatrist was really fixated on me getting a light box to cure my depression. I did Not want to do that, so I didnât. Sometimes, your doctors wonât move on to further treatment or tests until you try it, but most of the time you can say, âthatâs not something Iâm able to do right now. Letâs explore further options,â and theyâll 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 Iâve ever made for this. Itâs 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 youâre nauseous. Donât punish yourself.
This might seem like a no brainer, but if youâre traveling and youâre going to take your medication bottles with you, put them in a ziplock bag. They will definitely open in your suitcase, and youâll have to pick Levothyroxine out of your socks.
If a medication gives you icky side effects, tell your doctor and ask if thereâs something that doesnât do that. For me personally, itâs hard to find medication that works at all, so I often get stuck with things that make me feel like shit. But it doesnât hurt to ask. Sometimes new medications come out or they dig up old ones.
Some medications come in dissolvable tablets or suppositories. Theyâre 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. Iâve never used them before, but it might be worth looking into if need easy nausea relief.
All Things Wheelchair
Man, wheelchairs suck, but theyâre also amazing. If you find yourself using one, youâll encounter a steep learning curve.
If youâre not super buff when you first start, itâll 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. Iâm lucky that I can afford it, and I know itâs not an option for everyone, but if you can, find a trainer who wonât saying anything shitty and whoâs 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 canât 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 donât do training for it. Youâll be sore in the beginning. Ice and heat will be your friends after long days. If your wrists start hurting a lot, youâre 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 itâs cold, if Iâm going down hills, or in the rain/snow. (But seriously, if youâre going down steep hills, use traction gloves.)
Learn to pop a wheelie as soon as possible. Itâs such a helpful skill. If you get good enough, youâll 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. Itâs fucking disgusting, but you have to do it. Itâll fuck up your wheels and make it harder to maneuver. Also itâs 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 donât 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 youâre at it. Hand sanitizer or Clorox wipes are great for this.
Youâll notice that itâs 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 itâs 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. Hereâs 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 thatâs wide enough to reach across.
Lots of people will offer to push you. Some wonât even offer; theyâll just grab on and take you in whatever direction. Itâs insanely invasive and dehumanizing. Donât 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 canât grab them. I know some wheelchair users who like it when people offer to push them. Thatâs 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. Iâm 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 weâre not all carbon copies of each other. Thatâs okay! Just be respectful.
Getting a customized manual wheelchair was one of the single most stressful things I had to deal with. Insurance doesnât like to pay for them because itâs about 3-12k, depending on the specifications and add-ons. But itâs also been the most liberating thing Iâve done since getting my mobility stripped from me. Iâm 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. Itâs going to be really really difficult to know what you want the first time. Thereâs a lot of different brands and customizations, so do your research and talk in depth with whoeverâs making your chair. Ultra lite rigid frames are my favorite because theyâre usually only 15-40 pounds, and the wheels can come off to make it even lighter. However, rigid frames donât 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 donât 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 itâs 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 wonât 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 Iâm 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. Itâs important to work with a wheelchair company you really like because youâre literally putting you life in their hands. Iâve had better luck with smaller, locally-owned companies, but you canât always get referrals there, and not every town has them. Hereâs my tip to you: Numotion sucks ass. Avoid them. My branch of Numotion seems to be an outlier; Iâve 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 youâve completed your order formâgotten measurements and found customizationsâtheyâll 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 momâs job, and after the last appeal, her company told the insurance that they had to pay for it. This wonât 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. Itâs likely that theyâll only pay for the base chair, and youâll 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. Iâd 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. Sheâs right; if youâre wheelchair breaks, youâre stuck wherever you are without any backup. Carry your phone with you. Tell your friends or family where youâre 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 donât worry; youâll find that if something does go wrong, people are far more willing to help than youâd 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 couldnât, 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. Youâll 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 youâll need someone around to push you because it wonât have hand rims.
If youâre 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 couldnât do anymore and be angry about all the inaccessible infrastructure that America has. Donât 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 âI need to vent right now, and Iâm grateful youâre willing to listen to me, but Iâm not looking for any solutions to this at the moment,â or âcan you give me some suggestions to work around these things that are frustrating me?â 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 youâre 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 canât 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 arenât many of them, and lots of the time youâll have to drive several hours to see one. Thereâs usually a long wait list as well. (And of course, a lot of them donât take insurance.)
If youâre able to find someone whoâs certified, theyâll do an intake appointment and assess your physical abilities and needs. Sometimes, theyâll do the assessment and decide you arenât 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 Iâm not an OT, so I donât know all the ins and outs. If you pass the assessment, and they view you got to drive with hand controls, youâll 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. Thereâs 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 itâll depend on whether this is your first time ever driving, if youâve driven without hand controls before, and if you have any other medical issues that might make it hard for you to adapt. Once youâve completed the training and received your certificate from the OT, theyâll 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 youâre not careful. My hand controls were about 3k out of pocket, but it was definitely worth it. It wouldâve 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: youâre 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, itâs a very long, very expensive process, so plan ahead and be prepared to wait and pay.
Navigating Raising a Kid with Chronic Illnesses
I donât 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, thereâs no good way to comfort a child whoâs in 10/10 pain, or whoâs 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 couldnât 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. Sheâs used to fixing things, and this was one of those things she couldnât even help. I know she stills holds a lot of guilt for this, but she shouldnât. She did her best. Youâre doing your best too. You canât fix everything. That being said, here are her suggestions:
Therapy, therapy, therapy. They might hate it, but some day, theyâll thank you. Remember that not every therapist is right for every patient. If your kid wants to switch to a different therapist, let them. Itâs 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. Itâs 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, sheâd take me to the store and say, âpick out snacks and drinks. Weâre going to throw a pity party, gorge on sugar, watch Lord of the Rings, feel bad for ourselves, and tomorrow, weâll dust ourselves off and try again.â 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, sheâd 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, weâd 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 theyâve tried for GI issues, everything about the surgeries theyâve undergone. Some day, youâll need it. Or your kid will grow up into a chronically ill adult, and theyâll need it.
Talk to their school counselor about getting a 504 or IEP. Even if theyâre not struggling. I was a super academically minded kid; I didnât 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 theyâre 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 weâre on the subject of school: remember that education is important, but school is not the end all be all of your childâs life. What should matter the most to you is that they end up safe and happy. I didnât graduate high school; I took a proficiency test my junior year and dropped out. It was the best choice I couldâve 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. Donât 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 donât have a lot to offer on this other than you shouldnât settle for anyone who doesnât respect you, treat you with love and compassion, and accept every part of you for what it is. People will say rude shit. Theyâll be nasty, fetishizing, infantilizing, dismissive. Some wonât 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 donât want to. Participate as you see fit. Throw it all out if you want.
I donât have enough time to go into my tips for intimacy/sex and disability, but Iâll give you the highlights.
Communicate. Make it very clear what youâre able to do, what youâre interested in doing, and what you donât want.
There are lots of ways to have sex. If youâre both having fun, being safe, and engaging consensually, then youâre doing it right. Donât 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, donât 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, donât 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 youâre still actively having seizures, then theyâll take you anyways, but you probably wonât be in any shape to try to decline. If youâre having seizures regularly, tell your professors. Itâll 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 donât remember you, itâs good to send them an email and introduce yourself. Hopefully, youâve also talked to your collegeâs Disability Resource Center. If not, go do that. Now. (Thereâs a whole lot of shit that I have to say about campus accessibility and disability resource centers, but Iâm 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 youâre 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 itâs best to make sure itâs 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 Iâm trying to say is find things that work and implement them, even if theyâre non traditional.
Hereâs 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 Iâm expecting to be admitted, then Iâll pack more, but I try to keep it light if itâs just triage and a visit with the ER doctor. Sometimes Iâll 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 youâre in peds, go visit the rec room, even if itâs awkward. Their activities are usually meant for the younger kids, but it can be fun to connect with other people your age, and youâll thank yourself later when youâre 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. Itâll 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.
Donât 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 donât end up taking my meds. If it doesnât work for you, donât do it. If it does, then do it!
Donât buy the self help books your therapist recommends unless youâre actually interested in reading them. Itâll 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 Iâve been feeling really nauseous, my PSTD symptoms will get triggered over nothing, and itâll frustrate the fuck out of me because it seems like itâs happening over nothing. I try to track when my emotional state is worse to see if itâs correlated to my physical symptoms. This helps curb the frustration and guilt. Sometimes it makes me dissociate more. Itâs 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 youâre having trouble, so donât 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 itâs the shade he wants. Very occasionally, youâll come to the conclusion that thereâs a hobby you canât adapt. Let yourself be sad. I canât hike anymore and it sucks. I canât go tide-pooling either, and its not like if I just work really hard Iâll 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 youâre 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 itâll help, you should grant yourself the time to learn. Capitalism makes us think that we shouldnât 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. Itâs not a helpful metaphor for everyone, but most people in the community talk about it, so itâs good to be familiar with it.
Donât be afraid to go out and find community! Find support groups, look up wheelchair sports if youâre into getting sweaty, brave the awkwardness of starting conversations with other patients in the clinic. Iâm wholly and completely of the idea that humans are innately good. There are lots of interesting chronically ill/disabled people whoâre looking for connection. Insurance companies and other medical entities rely on us feeling isolated, alone, and uniformed to continue making money and hold power. Itâs important that we share with and support each other.
I know a lot of this is basic stuff, but itâs helpful to have reminders, and if youâre new to the whole song and dance, then itâs nice to get a sneak peak. There are a million things I didnât get to, but this was what was on the top of my brain.
Also, Iâm not the collective voice of every chronically ill person in the world. My experiences are not yours and theyâre not everyone elseâs. 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#Iâm still waiting for my gastric emptying scan but Iâd like to try out some of yâallâs 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 Iâll make another
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Tastes of Whumptober: Day 9
I simply couldn't give this prompt to anyone else. No need to know my blorbos beforehand, you'll figure out their dynamic pretty quick.
Obsession
âThis whole thing is really tipping into obsession territory.â
âYouâre just now realizing this?â
Declan paused.
âI meant that as a rude comment, Hasan.â
They clicked the menu button and the racers on screen stopped moving. Declan reached over to resume it by clicking Hasanâs controller, but they jerked it away and set it out of view.
âLook here.â He looked. Stupid obedience training. âWhat do you think I do in my free time?âÂ
âWhen youâre not down here?â It took a moment to formulate an answer. When they werenât in his face, he didnât often wonder what his kidnapper was up to. âYou have hobbies outside of torture, I figure.â
âI crocheted this,â Hasan volunteered, tugging the sleeve of their bolero.
âReally? I wouldâve pinned you as more of a fast fashion type, considering your loose morals.â He had seen them wearing clearly upper-end clothing before, but didnât want to inflate their ego any more than necessary.
The shock collar went off for just a second and he yelped, having nearly forgotten its presence.Â
âI own a house. I can afford clothes that wonât fall apart when I so much as breathe on the seams.â
âOhhhhhh, no wonder your landlord hasnât checked on me yet.â They snapped their fingers directly in front of his eyes and he flinched. At least it wasnât another shock.
âI asked you a question, remember? My free time.â
âDid you want a different answer? I said hobbies that arenât torture.â
âAnd Iâm saying youâre wrong.â
âRight, I forgot thereâs another man chained up in every room of- hhhck!â He doubled over, instinctively trying to dodge the hurt. âWhat?! Do all of your hobbies somehow incorporate torture now?âÂ
Silence was a strange answer to that question.
âThat doesnât seem healthy.â In more ways than one. The second part almost slipped out before he bit his tongue.
The collar didnât shock, but it vibrated softly in warning.
âHave you ever hyperfixated on a person rather than a subject or activity?â Hasan asked.
âOh my god. Iâm your hyperfixation.â It didnât answer their question, but it was the intended conclusion. âOh my god.â
âYouâve gone pale, Dec.â He jerked away from the hand on his cheek, but the collar nudged him and he let them touch. âIs it really that big of a deal to you?â
âI know what a hyperfixation is like.â
âWell?â They wanted to hear details.
âWell, I donât know if you hyperfixate the same way I do, but I tend to associate anything and everything back to it.â
âYes, I as well.â
Nausea slithered somewhere between his stomach and his throat.
âSo all of your downtime is spent relating all your favorite things back to hurting me.â Though phrased as a question, it most certainly wasnât. The spark in Hasanâs eyes understood that all too well.
âWhat can I say? Itâs an obsession.â
Declan turned in his seat staring intently at the television, willing it to unpause so he could stop thinking and play, but it could never be quite so easy. A hand in his hair forced him back to Hasan, now so close their noses could touch.Â
âYouâre so tenseâŠâ A light touch over his sternum. âLetâs unwind with a game. What rules were we already playing with?â The shock remote in the corner of his vision told him they remembered quite clearly, and an attempt to lessen the stakes wouldnât end well.
âWe were playing seven random races for choice of takeout and use of my free time.â Declan couldnât hide the tremor in his hands as he fiddled with the controller.
âAh, no, that wonât do. If I lost ownership of your free time tonight I might go mad.â They tapped his cheek in thought. âWeâll restart from race one. Iâll play you for choice of takeout⊠and choice of weapon.â
#whumptober2024#no.9#obsession#original#OC#writing#fic#my writing#creepy whumper#intimate whumper#captive whumpee#defiant whumpee#shock collar#collar whump#nausea mention#hair pulling#yes they are playing mariokart. mariokart wii to be precise#whumptober#Hasan and Declan#Hasan Badeaux#Declan Labelle#tastes of whumptober#i love just watching them talk. my absolute favorite thing......#adhd solidarity with whumper and whumpee: things you don't expect to find on boa's blog but you're also not surprised by#i've hyperfixated on people before or currently *cough cough my spouse cough cough* excuse me. don't know what that coughing was#and i just think it's a wonderfully terrifying thing to know that your kidnapper thinks of you as often as they possibly can#because it's currently their biggest source of happiness
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really feeling the age old post that went something like âsomeone should take me out. on a date or with a gun, i donât careâ
#» confidential#i think itâs probably good that iâm finally going to see my doctor about my stress levels#or wellâ hopefully i am. unless theyâre planning on us just talking about my meds#which are honestly not the issue here#the stress headache and stress nausea is back. again <3
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scenes that make you physically ill
#the stuff about billy before too. but this especially#and when flint says 'hal' i always have to sit down for a minute and stare at a wall#cause like. we all talk about the miranda scene from this episode (and rightfully so). but this is just#awful. painfull. nausea-inducing#so yeah#:/#black sails#rewatch
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it truly is always something
#i went to the pharmacy next to my house to talk about the 2 meds that were just âŠprescribed to me without any discussion or consent#and how those were there instead of the muscle relaxer iâd asked about#and it turned out they were completely totally 100% no hope of gettting more theyâre in short supply out of the strong nausea pills i get of#for when the migraine pukes are really bad#nothing else helps#so i had to find another pharmacy#and now iâm going through the process of having them contact the clinic#and get those taken off#and maybe get my muscle relaxer#all over again#aaaarrrrrrggggghhhhhh#innko rants#chronic illness
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Hello Wind! *hands you a warm drink and a granola bar*
I've been wondering, how does the body compensate for low blood volume? Doesn't have to be because of traumatic blood loss, I'm just curious. If you don't know (as far as I know, that's not really related to respiratory therapy?) feel free to pester one of the other boys.
(It's wonderful to have you back, Skye! Missed seeing you on here, but really glad you took the time for yourself.)
Wind: Hello! I definitely am not an expert enough in this, so I'm going to phone a friend. *throws a pillow at Four* Hey ICU nurse! I feel like you'd be good at explaining this.
Warriors, whispering: Pretty sure the trauma surgeon would be the best to explain this, but what do I know
Time, smirking: Let Four explain, he understands it just fine.
Four: Your body compensates in several ways. First, your blood vessels clamp down to maintain blood pressure. You know how if you have a hose, and the water is just spilling out slowly, if you cover the hole slightly it increases pressure and the hose is spurting out water? Same logic. Your body knows this, so it makes all the blood vessels clamp down. The counter-effect to his is that it can increase systemic vascular resistance, which is something your heart has to fight against. But if your heart is healthy, it isn't that big of a deal. Speaking of your heart, it also compensates by beating faster to increase cardiac output. The entire point of compensating is ensuring your body still gets oxygen/nutrients to where it needs at the rate it would--if not faster depending on the situation--if you had adequate blood levels.
Legend: Yeah, and so long as you can maintain your blood pressure while doing this, it's called compensatory shock. Your body's in shock, but it's compensating well enough. The issue is when you STOP compensating.
Time: That's the point that your heart rate slows and your blood pressure falls. It's a fairly ominous sign, and usually means death is coming very soon if you don't step in and do something.
#you ask the healthcare boys answer#lovely bluevaractyl#blorbo time#skye talks medical stuff#lu in healthcare#thank you! :D it's fun to be back but I definitely needed the break#I appreciate you <3#there are more layers to this depending on the kind of shock but you mentioned low blood volume which is hypovolemic shock so#this is the main thing with that#it gets fun when you add comorbidities to it#hypovolemic shock + crappy heart for example#the easiest fix of course is just give blood! and fluids!#depending on why they're hypovolemic#trauma = blood#nausea vomiting could just need regular fluids#lots of factors!
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went to a clinic because of a bad fever and they gave me nausea medication because it was one of my symptoms. after a few days i was like âim not nauseous anymore why am i still taking thisâ so i stopped. woke up and youâre not gonna believe what happened
#tmi about it in desc#oh also#emeto tw#i got a fever and it was really bad. like it was affecting me really bad#i also kept dry heaving because i wouldnât stop throwing up#and because i couldnât eat anything there was nothing for my stomach to throw up#so they gave me medication for the fever and nausea. but guess whoâs an absolute idiot#to be fair#itâs fucking disgusting#itâs a pill i have to dissolve under my tongue#if i could just swallow it thereâd be no issue#also funny side story#the doctor was trying to ask me questions about my symptoms#but she had a thick accent and mask that didnât help#so i looked at my mom like â?? ? mommy helpâ#and she clarified to me in spanish#so much so the doctor started talking to me. in spanish#and the funniest thing is. it helped. i understood her a little better#anyway#iâm just trying to stay awake til the meds kick in lol#itâs too early to be awake#wish me luck#cnp rants
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the problem with having taken a sick leave last year and having so many people reassure me that it was necessary and okay and good is that it created some kind of pop-up error message in my head that says "actually all my responsibilities should wait until i don't feel sick" when the reality is that i feel a little sick all the time and will for the foreseeable future. i am nowhere near as sick as i was and i both can and must do things. my once notable skill of powering through with an inner well of silent smugness has been critically weakened, because in addition to the realistic necessary burden of the actual things while feeling uncomfortable, i also have the weight of the little gremlin in my head saying "we don't have to tho :3" yes we do!! like yeah sometimes pushing myself will make things worse but i gotta. and sometimes the work i do will be sub-par because i feel sick but i gotta do it anyway. and sometimes it won't even make things worse it's just me feeling like i should "rest up" for a magical wellspring of health that won't actually arise because the whole deal with this thing is that the fatigue is not cured by rest and the meds i'm taking have side effects and i just!! gotta do it!!!!!
#the symptoms#sometimes i gotta pep talk out loud#this one new med i'm testing has all these bipolar warnings for mania that everyone's đ watching for but so far it's like...#i don't have any of the energy or godly ambition that usually comes at the beginning of an upward swing for me#but i DO have more of the 'can't focus on one thing' and 'consequences never heard of her'#and coupled with low energy and nausea that's counterproductive my dudes!!!!!
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#Iâm curious about this because even when I get really bad nausea my throat being sore is still by far the worst part of being sick#Because it makes it so that Iâm constantly in some level of pain/discomfort and also makes me unable to eat and drink most of the time#Even when I can itâs usually still pretty rough#Krafter Talks
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