#chronic illness advice

[tea-and-spoons]

Spoonie Life Tip #11

Psychosomatic does NOT mean you're faking

Placebo effect does NOT mean you're faking

"No organic cause" does NOT mean you're faking

Brains are powerful and weird. Your symptoms are real.

#teaandspoons #chronic illness advice #disability #chronic illness #spoonie #chronic pain #chronic fatigue #functional neurological disorder #undiagnosed

[lifewithchronicpain]

If you don't need a cane, but you get one to signal disability because sometimes you get faint and need to sit, or whatever, as a cane user for years, go ahead. Please, if it makes claiming accomodations easier for you, even if you don't need it to walk, I don't care. This is your permission if you needed it.

Can I suggest that you can get a foldable one at CVS (they're great) so it's there when you need it? Shits fucked up, do what you need to do. Just beware there are assholes that won't care about the cane. But overall, it does make things easier and is easily purchased. Go for it.

#disability #chronic pain #chronic illness #spoonies #mobility aids #advice #accomodations #spoonie life #ableism

[the-archenlandian-court]

Things I wish I knew before I got diagnosed with a chronic illness

You’ll forget - Sometimes you’ll straight up forget you have a condition, that you have a disability, and that others don’t feel like you

Your most important job is to stay alive - Everything else is secondary, as long as you stay alive you have achieved something

It’s okay to cry - It’s normal, chronic illness is sucky, but don’t cry for too long or focus too hard on everything that’s wrong because it will make things worse

Your body is in a war, be kind - Your body is constantly fighting against itself, give it time to rest and heal, eat food and drink, do what you can to aid in the battle

If you feel like you can’t do it, you can - Have a cry, eat some ice cream and have a nap, when you wake up you’ll find the strength to keep going

Some advice from younger me; January of 2021 (I just found it stashed away)

#advice #chronic illness #things i wish i knew #disabled #disability #chronic pain #fibromyalgia #chronic nausea #chronic fatigue #cfs/me #hypermobile eds #pots

[sunrisethoughts02]

I think something we should talk about more in the chronic illness, mental health, and disability communities is the feelings of fear wrapped around high spoons days. It really is okay to feel nervous when you’re feeling good (even for just an hour). It doesn’t mean you’re broken or wrongs m. It’s okay to take your time learning what routines serve you best at different energy and pain levels. it’s okay to learn not to push yourself too far. It’s okay to acknowledge feelings of anxiety or fear or bittersweetness over really good moments. It’s okay 💜

#chronic illness tag #chronic pain #chronically ill #chronic fatigue #chronic illness care #disability #disabled #autoimmune illness #mental wellness #self care #mental health #self improvement #self love #mental wellbeing #self help #depression and anxiety #positivity #depression advice #mental illness #mental well-being

[disabledfaebles]

anyway, Thought Of The Night:

when i was 6, i started experiencing back pain. said it hurt, kept suggesting a doctor.

no one listened.

by the age of 13, i should have been tested for scoliosis.

the school fucked up, and i wasnt.

at the age of 14, i went to the doctor for a bad back.

she looked at me, looked at how criminally large my breasts where, how fat i had become due to inability to exercise properly.

looked at my back. said i might get scoliosis if this kept up. do these exercises, youll be fine.

sent me home.

at the age of 15, i walked around New Orleans for a week in flats. gave myself tendonitis and plantar faasciatis.

no referrerals to a proper PT specialist. no rx drugs that might help. just...

here, do these at home exercises.

by the age of 16, i was having stomach pain every day from acid caused by my OTC drug use.

the stuff i used to mitigate the pain.

the doctor gave me what was essentially topical Ibuprofen. told me i couldn't injest painkillers anymore.

i was 20 by the time i saw a doctor and got my diagnoses. i was 20 before i knew i had fibro and scoliosis. i was 20 before i knew that drugs that weren't narcotics or OTCs that messed with my stomach existed, that i should use a cane, that i might need a wheelchair some days.

kids don't say "I'm in pain" over and over and over for attention. they don't fake being hurt in a chronic way.

i feel like everything i went through was preventable. i feel like i might be abled had i had proper care and treatment.

parents, caregivers, loved ones of children:

When a kid says they're in pain, please listen.

#cripple punk #cpunk #actually disabled #chronic pain #disability #disabled #advice for raising kids #please if you have a kid thats consistently reporting pain. listen. see if you can get them checked #i dont wanna think about how many more stories are out there like mine #but if i can stop even one more from happening. ill be happy. thats a win for me

[disabilityhealth]

Just because your life hasn’t gone in the direction you expected doesn’t mean the destination won’t be worthwhile

#affirmations #life #advice #positivity #spoonie #chronic illness #my text #disability #disabled #chronically ill #important

[ihavea-natural-curiosity]

hey, wheelchair users, i would like some advice

currently i’m on forearm crutches but this summer i’m hoping to get a chair for part-time use and im wondering how i could go about that?

insurance will most likely not pay for it since i can walk without it and dont really need it in their eyes. does anyone have any recommendations for a place to get an affordable chair?

i’m in the US, and i would need something that’s basically the typical hospital chair, but foldable and as close to custom-fit as possible (and preferably not the hospital grey?) and i’m about average weight so wideness shouldn’t really be an issue?

if anyone has advice on this i would really appreciate it :)

Edit: thank you all who gave me advice!! ive got it all figured out now :)

#feel free to reblog #disabled #young disabled #wheelchair #mobility aid #fibromyalgia #advice #chronic condition #chronic pain #chronic illness #chronically ill #wheelchair user #actually disabled

[youngpeachenthusiast]

okay after this one i swear i'm done asking for advice today

i'm currently in a fight with my mother because i refuse to take pain medication for my chronic pain. hear me out.

the way i see it, the pain meds i have available do absolutely nothing and i don't want to fill up on meds that don't work. like, that can't be good for my stomach or like, in general, right?

the way she sees it, i should still take it even if it doesn't help at all and if i don't take it i don't have the right to complain that i'm in pain.

i really do not know the answer here and am just looking for an opinion from someone who maybe is more used to taking meds?? this wouldn't be the first time she forces me to medicate to the point where 1. a whole category of meds doesn't do anything for me anymore 2. i hurt my body in the process, so that is where the skepticism is all coming from

#elliot talks #also if you do not have an answer please rb this so maybe someone who can help sees it??? #chronic illness #chronic pain #chronically ill #joint pain #chronic fatigue #disability advice #disability #disabled #i'm the kind of human wreckage that you love

[tofu-bento-box]

// serious post

here’s the thing i don’t get: people tell you to communicate your feelings, and then react negatively when you feel something they don’t think you should.

i’m ill in six different directions: my feelings are mostly negative and generally illogical. i get upset for reasons that i know don’t matter in the bigger scheme of things. but i can’t express that anger or hurt, because then people think that i am selfish, and entitled, and a bad friend. on the other hand, though, i’m also bad at hiding my feelings, and saying you’re okay when you clearly aren’t is also rude. so it’s just a constant struggle between “how much can i say to make this person feel that i’m answering truthfully, without them deciding i’m a selfish asshole.”

people tell me that you can’t rationalize away your emotions, and then react with disgust when i can’t do that for “the things that matter.” i’m upset. i know i shouldn’t be, i’m upset that i’m upset, but you sitting there judging me isn’t exactly going to help the situation. i know that whatever’s going on with my friends is more important than how it affects me. but then what does selflessness look like? is it not being upset in the first place, or is it just hiding your expression of your hurt? am i incapable of being a good friend because i can’t keep myself from feeling things i shouldn’t?

i just don’t get people sometimes. it’s like everyone has a rulebook for what’s allowed, and they just forgot to give me a copy. i get told communicate, communicate, communicate, over and over, and everyone forgets to mention what i’m meant to be conveying. because sometimes it really seems that what they want isn’t the truth.

#vent post #personal vent #not about anyone here #rant #chronic illness #migraine #spoonie #autism #actually autistic #autistic things #autistic adult #social rules #nd #neurodivergent #neurodiversity #autism problems #chronic pain #disabled #disability #i’m genuinely confused #this is the one thing i can never seem to get #good communication #eludes me it seems #communication problems #serious post #advice #need advice

[tea-and-spoons]

Spoonie Life Tip #8

You are allowed to ask your doctor for things.  Whether that be a referral to PT, a certain test, anxiety meds before a procedure, anything.  They may not agree, but you are 100% allowed to ask, and it just might work.

#teaandspoons #chronic illness advice #disability #chronic illness #spoonie #disability advice #chronic pain #chronic fatigue #chronically ill

[mel10hi]

Hello people ! I have questions if you're willing to answer !! So, people with hypermobility, fibromyalgia, chronic pain conditions, etc, what are some signs someone could see or feel for themselves? Like anything that would be like a "Hey that's not normal" type deal. I've looked into some stuff a bit, and I would like to hear experiences and stuff from anyone who's willing and comfortable to share !

I'm just trying to narrow things down and try to figure out what's wrong with me so I can support myself the best I can and try to advocate for myself at the doctors the better ! Anything helps. Thank you !

#chronic pain #chronic pain? #mobility aid #disability #hypermobility #hypermobile ehlers danlos #hypermobile spectrum disorder #hypermobile eds #help #advice #fibromyalgia #chronic illness #chronically ill #chronic fatigue

[panicismydefaultstate]

A little note for some partners, friends and family of people suffering from a mental or chronic illness- One of the most kind, supportive and loving things you can do is spend the time to educate yourself in better understanding what they are going through. Showing them that you care enough to spend time and energy reading up on how the illness works (and not just relying on stereotypical or general knowledge that can inadvertently be harmful) and different coping strategies/helpful management tips.

#chronic illness #disability #chronic fatigue #chronic pain #chronically ill #mental illness #fibromyalgia #dysautonomia #i hate being sick #long covid #functional neurological disorder #dating #relationship advice #relationship tips #disability allyship #disability support

[justsomerandomgay]

reminder that it’s okay to eat a big meal or an “unhealthy” meal or snack. it’s important to give your body what it needs and sometimes what it needs is something warm and comforting and tasty. it’s important to be both happy and healthy. one snack, one meal, one day, won’t change your body or your health. you deserve nice things ❤️‍🩹

#reminders #chronic illness #chronically ill #ed recovery #3ating d1sorder #mental illness recovery #cripplepunk #cripple punk #chronic pain #cripple posting #crip punk #cripple shit #queer cripple #ed advice

[crazycatsiren]

You know what fries my pancakes? Self proclaimed "health experts" on Instagram who didn't even go to medical school getting on my posts about flare-ups and giving me a lecture on ME/CFS being "just a set of symptoms", and claiming that once I find the "root cause" of those and "re-balance" them (whatever that even means), my chronic fatigue will disappear and I will be all well again (seriously, wtf).

As if that's how any of this works. If it were that easy, lol, not only would I have stopped being disabled and chronically ill 2 and a half years ago, I'd be rich by now, with the great knowledge of a magical miracle relief from ME/CFS for millions of people worldwide.

Scientific fact: the root cause of ME/CFS is ME/CFS. ME/CFS is a neuroimmunological disorder that currently has no cure and no one set of effective and approved treatments. On the optimistic side, approximately 6% of patients recover from it, and that's not even necessarily a 100% complete recovery. Medical professionals still can't do much for us as of 2023. If anything actually worked to alleviate our suffering, we would've all done it ages ago. There's nothing anyone can offer that we haven't thought of and tried already, fucks' sakes, Christ's fucks.

To act like you know more about our bodies and our illnesses than we do, toward those of us whose lives you have absolutely no idea about, whose daily struggles with a debilitating disease you can't even see, to have never walked a minute in our shoes, is incredibly invalidating and not to mention ableist.

#ableism #ableist bullshit #ableds stfu challenge #disabled #spoonie #cripple punk #me/cfs #chronic illness warrior #chronic fatigue warrior #millions missing #no spoons only knives #unsolicited advice

[mx-jester]

so I've only recently begun my medical journey about my possible disability, and I'm hoping anyone with a better understanding of all this could give me some advise.

I don't have any professional diagnosis yet, although I've been using the term chronic pain & Fibromyalgia given that's what's most likely and what my experience has ben compared to the most. I'm set up to see a physical therapist at some point, and am able bodied. I'm still new to the world of having a disability, I never though it was abnormal.

I don't know if ill end up needing or wanting a mobility aid, the closest experience I have with them is older family members who don't like using their aids or using a pair of axillary crutches. I don't know what I can do to make my daily life at least a little better, I would like to be able to be more comfortable in life.

if anyone has any wish words for me, or any tips, or anything at all that you think i should know please do.

#text post #text only #disabilties #disability #disabled #chronic pain #chronic illness #chronically ill #chronic fatigue #fibromyalgia #fibro things #fibrolife #fibro problems #newly disabled #newly diagnosed #spoon theory #no spoons #spoonie #advice please #advice needed #advice welcome #tips #life advice

[disabilityhealth]

Sometimes things get too heavy to carry. It’s okay to ask for help.

#advice #mental health #self care #therapy #spoonie #chronic illness #disability #disabled #my text