#spoonie advice | Explore Tumblr Posts and Blogs

the-spoonie-life · 11 months

Note

Hello! I recently got a manuel wheelchair, and while I don't use it most of the time, I do want to use it while grocery shopping so I can not use up as many spoons. I've grocery shopped I'm a wheelchair once before, but it was the store's wheelchair and had a basket attached to the front (it was also big and clunky). Do you or your followers have any tips for me?

Sorry for taking so long to reply. Anyone got any useful tips?

I’ve never used a wheelchair before besides from being pushed around in one in hospitals so I guess make sure you can comfortably do the things you need/ want to do while using it.

#spoonie #spoonie life #chronic illness #wheelchair #spoonie advice

26 notes · View notes

lifewithchronicpain · 11 months

Text

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

3K notes · View notes

fernshawart · 2 years

Text

How to write a cane user character

(Written by a cane user)

A few months ago, I wrote a small guide on good disabled characters and why they were good that gathered quite the attention, and I thought that doing another more specific guide this time would be interesting for writers or just people that are curious ! This guide will include general informations, some things to do, some things to avoid and some ideas that might revolve cane users's lives.

Things to know about cane users

Cane users are pretty diverse, and putting us in little boxes usually isn't the best idea if you want to make a character that has substance and isn't just "the disabled one". Here some infos about cane users that might be helpful knowledge !

Canes don't have ages. Most cane users in media are portrayed to be old, but truly, anyone can have the need to wield a cane ! I've been using mine ever since I was 17.

Can users can have a large variety of problems for their canes. Some canes are used to avoid pain from effort. Some canes are used for balance purposes. Some canes are to make walking less exhausting (works the same as walking sticks !) And sometimes, it's multiple problems at once.

Not everyone needs their cane 24/7. Some always need it, some can make small efforts without it but overall often need it, and some people, like me, can spend quite a lot of time without it. I almost never use my cane in my house, and mostly take it outside !

People with canes can run. We're not necessarily slow, I'm even faster than a lot of my friends.

Not using a cane can come with consequences, but not always. Some people might be able to walk without a cane but then suffer horrible consequences, but for others, canes are just a commodity for specific occasions.

Canes don't have to be looked down upon. Look at some characters with canes that look cool as hell ! Arsène Lupin, Roguefort Cookie, Brook ... Their canes serve their style !

We can be pretty healthy. Some people can have canes just because they were born with a bent leg and that's it. Our cane doesn't define our health status.

Canes aren't a curse. Think of them as something positive. It's a tool to make our lives better. You don't see someone sitting on a chair and think "awh, it's sad that they need a chair". It's more something like "hey it's cool that this chair is here so they can sit down"

Things to do

Make them use their cane. And when I mean use, I mean that canes are just funky long sticks usually made out of metal. Have fun with it ! Let them use it as a weapon ! Trust me, one hit in the knees with a cane and you're DOWN. Use it to reach stuff that's too high for everyone ! Have fun. Be creative.

Let them decorate their cane. It's an extension of their body ! You usually put on clothes that you like, don't you ? It's the same for a cane. If they like cutesy stuff, let them paint in it pastel colors ! If they like a more flashy style, add some stickers on it ! If they're a fancy person, give them a beautiful crafted cane with jewels on it !

You can make them a little shy or uneasy about their cane. Some people don't feel worthy of confident enough to wield one. It's not rare to see people think they're "not disabled enough to do so"

But on the other hand, you can do the complete opposite !! Make them proud of that cane ! Make them act like they're feeling pretty and more confident with it ! One thing i like to think about with my own cane is that I look like a cool gentleman. That boosted my confidence immensely.

Things to avoid

Don't make it their whole world. And by that, I do not mean that their cane shouldn't be a defining trait of their personality. Think of Toph from ATLA. She is blind, and you usually can't think of her character without describing her as blind. However, that isn't her entire personality trait. Make cane users have a goal in life, friends who enjoy them for who they are and not just pity them, have fun ... Don't just make them the disabled one.

Don't try to make the character's life just a plain disaster unless it's the focus of your story and you really know what you're talking about. Having a character who's always in pain, who feels bad about relying on their cane and/or who's angry at the entire world for being disabled is a REALLY tricky subject to use if you don't want them to be either a mass of unhappiness and angst for no good reason or some inspirational porn of the character who inside is deeply tortured but outside keeps up a facade because they shouldn't cry to avoid making others uneasy.

Do not, and I repeat, do NOT try to heal them, especially in a magical way. Bad idea. A lot of disabled people's goal isn't to be healed. It's to live a normal life. Making it so the ultimate goal for them is to be healed makes it as if they were worthless as long as they were disabled. Making their situation better physically or mentally is one thing. Curing them completely is really bad. "But some disabled folks want to be cured !" True, true. But if you are able bodied, I'm not sure if you can have the right mind to understand all of the complex details about this situation that leads to someone's life choices and the end result may look like you think the only thing that can make disabled people happy is being freed from their condition. I think it's best to just avoid it altogether. If you need a more nuanced idea, try to give them a solution that still has a few downs ! For exemple, a prosthetic that feels like a real arm, acts like a real arm and basically replaces it perfectly is a full cure. But a prosthetic that takes time to adjust to, needs repairs sometimes and doesn't look 100% like an arm can be a better narrative choice

Smaller thing, but don't make the handle uneasy to wield if you draw the character design. You can decorate most of the cane, but if you have chunky spiky decorations on the place you're supposed to clench your hand over, you're gonna hurt yourself. I've seen quite a lot of jewel handles or sculpted metal handles and usually their not good. If it's detailed metal, your hand will end up cramped in little parts and it can hurt. If it's a jewel, it's so easy for it to slip out of your hand it's unpractical.

List of tropes/ideas of scenes/details about canes to help you write new situations !

If you walk with a cane during winter, you can't put your hand in your jacket to get warm and there's a high chance your hand will get freezing. So after a long walk, you get an excuse for another character to hold their hand and warm them up.

If the handle is metallic, you get the opposite problem during summer. You can burn yourself so easy ! Easy accident if you want someone to help and get closer to the disabled person without it necessarily involving their disability.

Canes are SUPER useful when you're walking upon heights. They make things really easy, just like hiking poles on mountains ! I live on volcanoes and whenever we clim on a harsh slope, I'm always the first to get up there. Good moment for your character to get a boost of confidence if they get all the way up somewhere before their friends !

The first time using your cane feels magical. If you have chronic pains, it makes you feel like your pain disapear. If you can't walk right, it feels like everything is suddenly alright. The moment where a character chooses to wield a cane can be huge for character development. It's a moment of fear because of the impact a cane has on their appearance, but also a moment of confidence and relief.

Canes fall. All the time. And after a while, it becomes fucking comical. Trust me, putting a cane against the wall, seeing it fall and doing it three times again in a row while it doesn't want to stay up makes you embarrassed but also makes you want to laugh because of how stupid it looks.

When you get a cane, you stop being invisible. When you walk outside, generally speaking, people don't look at you. They don't care about you. But when you get a cane, people start to stare at you for no other reasons that you have a cane. Half of them are just curious, especially if you're young. The other half has a very specific look. The "oh, you poor thing" look. Which is, trust me, particularly awful to get, especially when you're just existing and doing nothing special. How does your character react to this ? How do they feel about it ?

I believe that is all I had in mind. I may add some more details in the future if I get other ideas, but this should already be a good start. I would be thrilled to answer questions if you have some, either in my askbox or through DMs.

I will tag this post with characters holding canes that aren't necessarily considered cane users but that some people may be interested in writing as such. Feel free to tell me if you'd like to see tags being added !

Edit : I'm highly encouraging everyone to look at the tag section under this post where a lot of other can users are sharing their experiences !!

20K notes · View notes

juuls · 2 years

Text

I keep falling asleep everywhere and it’s only been a few days. Any Spoonies of the Fibro kind have any experience with this..:….? : Basically on Wednesday my body started hurting everywhere and not just in the trigger points. No new meds, no new habits. But it got so unbearable that my brother dropped me off at the hospital (he had to pick me up about a half dizen hours later because of Raid, which I said was wonderfully fine (I used to raid, myself lol)).

I kept falling asleep everywhere. Waiting room, doctor’s room before he got in, doctor’s room after, and then at the coffee shop I waited at for my brother (the staff were so sweet and basically adopted me).

Had to fight (well, I gently pushed, not fought) for even 3 days of the lowest form of ‘narcotic family meds. It helped but I’ll definitely talk to my regular doc about it on June 1st.

Doc was a little worried about a blood-borne virus or another type of virus that starts eating st the joints. Which actually jives with what my physiotherapist said on Tuesday when she noticed arthritic nodules at the base of my fingers that weren’t there a year ago. Sigh. Would be a shame if I had gout. :P

And yet he still didn’t draw blood or seab or anything fir other samples???

People hear ‘fibromyalgia’ and seem to just close off half their brain. Ridiculous.

But yes. Mostly my question is: have any of you experienced excessive lethargy and sharp pain everywhere on your body, not just triggers? Any hints or clues from your own life experience?

Medical side of Tumblr, I call upon you with this ring of—wait, wrong script. 😂

But yeah, any and all advice would be loving. When it’s just my trigger points hurting, I do know how to lie down to minimize the pain. This, though? Far more widespread snd the lethargy is likely because of not sleeping well.

*violently shakes magic 8 ball* GIVE ME A CLEAR ANSWER, YOU HUNK OF JUNK

And before you ask: yes I had a fully normal (besides herniation and degeneration) MRI done in 2018, osteoporosis check every few, pap every 3, somewhat regular blood tests (unless they look at the wrong things…

So hey! It’s great I’m not nauseous nearly as bad as those 8 months were but oh lookie, a new problem. Or one I was ignoring on purpose while dealing with the nausea.

Sad part is I can only have a ~1km walk a day and it’s been so lovely out. I can sit on the comfy deck chairs but everyone else has to walk Yg noe. My baby. 😢🥲🥰

Off to go fall asleep outside since I just now crossed “fall asleep in shower” off my list. Jeebies H. Crab.

Any help is great, even commiserating! Love all y’all and thanks for listening to me be all upset. Time for some fanfic I’ll likely get a paragraph into then zzzzzz. :P

💜💙💜❤️🧡💙💜

1 note · View note

disabilityhealth · 2 years

Text

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

4K notes · View notes

tofu-bento-box · 14 days

Text

// 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.

59 notes · View notes

tea-and-spoons · 2 months

Text

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

67 notes · View notes

spooniestrong · 8 months

Text

#spooniestrong #spoonie #unsolicited medical advice #ableism

161 notes · View notes

crazycatsiren · 7 months

Text

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

120 notes · View notes

mx-jester · 8 months

Text

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.

88 notes · View notes

monachopsis-11 · 1 year

Text

When you’ve been so conditioned to ignore your own needs that your automatic response to being under stimulated is to sit still and not do anything, like I need to move or do something but I can’t. At least if I’m overstimulated curling up in my room where it’s quiet and calm helps but under stimulation is just impossible to fix, if anyone has advice on helping under stimulation I’d love to hear it because this sucks 😐😣

#actually autistic #autistic experiences #autistic women #self diagnosed autism #late diagnosed autistic #invisible disability #autism #actuallyautistic #asd #autistic community #disability #sensory issues #spoonie #please give me advice #being autistic #understimulated

229 notes · View notes

the-spoonie-life · 1 year

Note

Hi! Im a new cane user. I wanted to ask how to bring a cane or wheelchair through TSA at the airport? I know how to store my cane in a plane, im just not sure how to get it through. Do I have to put it on the item belt? Or do I contonue walking through with it? Do I need to have an official diagnosis to even bring it?

I personally have never had to go through airport security with a cane/ wheelchair but I have been with my mum when she needed crutches. They had her walk through with the crutches and then used the wand to check her. You may just have to let the person know that you need it to be able to walk through.

Any one with experience with this leave your advice please.

#spoonie #assistive devices #spoonie travel #airport security #TSA #Spoonie advice #spoonie asks

14 notes · View notes

spacedocmom · 3 months

Text

Doctor Beverly Crusher @SpaceDocMom Hello all of my sweethearts out there across time and space! Remember to hydrate, take your meds, mask up, protect yourself against the weather, and that rest is a bodily function, not a luxury! emojis: black heart, blue heart, masked, water cup, couch, bed, jacket, sunscreen, smile with three hearts 3:39 PM · Jan 31, 2024

#star trek #doctor crusher #star trek the next generation #star trek memes #star trek tng #kindness #support #care #compassion #self care #spoons #spoonies #go hydrate #take your pills #take your meds #chronic illness #make good choices #mom advice

34 notes · View notes

lifewithchronicpain · 2 years

Text

I generally don't have an issue telling people about my disability and what it's like. Either they asked or I need an accomodation and don't mind explaining why.

Here's the thing that abled people need to understand, I respect an answer of "oh that sucks" far more to "we'll have you tried yoga?" You don't have to have answers or solutions, I'm never telling you for that purpose. If you don't know what to say, that's fine. You don't have to fill that void of trying to fix things, I go to my doctor's for that.

That said, if something I struggle with sounds too familiar, and you want to ask more because maybe something you thought was normal maybe isn't? I'm here for you, and happy to go through every symptom and what I did about it to help you out on your new journey.

#chronic pain #disability #spoonies #ableism #chronic illness #advice

563 notes · View notes

willowisachy · 3 months

Text

aaaugh my pain is so bad with this weather that even an old surgery site from literally YEARS AGO is hurting again???

like the whole area outside and inside where the work was done hurts, does this happen to anyone else or is there something wrong and maybe it’s not the weather????? :(((

#chronic fatigue #chronic illness #chronic illness warrior #chronic migraine #chronic pain #chronically ill #fibromyalgia #chronic illness vent #helpppp #advice #advice please #spoonie

40 notes · View notes

disabilityhealth · 2 years

Text

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

1K notes · View notes