#Spoonies

[kimberlychapman]

Also, if they're doing something in their own yard they probably have more accommodations and assistance devices than most employers are willing to provide.

Do you have a disabled neighbor who receives benefits because they can't work but you see them playing a sport with their child, doing yardwork, or doing other physical activity?

That doesn't mean they're faking their disability.

If someone can do physical exercise for an hour on a good day, that doesn't mean they can do it on command for eight hours straight then do it again the next day and the next and the next and the next.

Disabled people should not have to perform their disability to your standards.

[certifiedgoofball]

i hate when i, a completely healthy person (very chronically ill), get sick (flare up) for no reason at all (i exerted myself way past my limit just cuz i didn’t wanna be “annoying”)

[myalgicencephalomyelitiscfstom]

[disabled-bug]

I’m so proud of people living with chronic health conditions. That shit is HARD. Idk who needs to hear this, but if no one else has said it: I’m proud of you. You’re sticking it out through so much pain and grief. That’s no small feat.

Every small thing you do for yourself health adds up. The grief is heavy and it comes from a place of love. The grief knows the pain is wronging you.

I’m proud of you. I hope on the good days you can be proud of yourself.

Keep going.

[spookietrex]

[chronicsymptomsyndrome]

I know its kind of silly to say “don’t feel bad for canceling because of pain, fatigue, etc” because I know guilt is a reflex you can’t easily refrain from. But you can reason with yourself so instead I’ll say this:

Nobody can feel what you’re feeling but you. Nobody knows the severity of what you would be putting yourself through if you were to “tough it out.”

If you do “tough it out,” the purpose for you doing the thing will most likely not be fulfilled anyway. You probably will not be mentally present or engaged. You probably will not have a good time or get much out of it. Etc.

If people really have such a problem with it, thats a huge red flag. Being transparent about your needs and boundaries is a great way to weed people like that out of your life.

If you have any kind of chronic illness or disability, remember that you probably have a very warped judgement of what is “reasonable” to endure in terms of pain, fatigue, burnout, etc.

You didn’t ask for this, you don’t deserve this, there is no reason you should have to bear the weight of it alone. I bet if someone else was in your position, you wouldn’t mind helping accommodate for them?

Low energy days are truly sacred, take them seriously. Please respect your body’s signals. “If you do not choose times to rest, your body will choose for you” or however the saying goes

It is so much pressure to have to deliberate what sacrifices are necessary for proper self care. Give yourself extra credit for having to deal with that stress on top of whatever is putting you in that position in the first place. Thats a lot at once

You are leading by example and showing others that you would never expect them to hurt or overextend themselves for your benefit. Putting yourself first always inspires other to do the same.

Please be proud of yourself for even considering canceling and putting your needs first. That is so strong of you <3

[fanon-and-canon]

"you always have something wrong with you"

well yea, no shit. its like im chronically ill or something

[the-jesus-pill]

You’ve got to forgive yourself for being traumatized and needing to learn how to function again. 

Recovery isn’t always nightmares and depression, it’s forgetting to eat, being scared of what others might see as completely normal things, it’s getting random panic attacks, not knowing how to take care of yourself, not knowing how to live like an adult, even if you’re twenty, thirty, forty, fifty, of feeling like you’re failing to function in a world where everyone seems to have their shit together. 

If you need help, ask for it. Go to forums and ask for advice. Take advantage of community resources. Buy pre-sliced veggies and fruits, eat instant meals if you can’t cook for yourself today. Hire someone. Ask a neighbor for a favor. Buy any item you think might make life easier, even if you feel like you aren’t ‘disabled’ enough to have it. 

Some of the depression posts (ie open your windows, take a shower, go outside, call a friend) are really helpful but they’re not always enough. I’ve found advice for spoonies, people with chronic pain or other disabilities have the best tips because they know what it’s like to be bedridden, out of energy, stuck in a brain fog. 

You may never return back to the energy you had when you were younger and you might always need to use crutches to help you through life. It’s the same with medication. 

Trauma is a real thing that happens to you, it physically alters your brain and it’s alright to have lasting scars. 

You’re not broken, your life is not over and you can still be happy. 

It’s not your fault.

[disabledfrogs]

Disabled people don't owe you a diagnosis. Don't ask "what's wrong" there's nothing wrong with me I'm just disabled. You're a stranger, why would I tell you something that should only be between me and my doctor?

[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.

[spoonie-support]

[chronicillnesshumor]

[cripp-tid]

if you can't have kids for medical reasons, i love you. a lot of people emphasize the joy of children, talk about how they changed their life, etc., and that's just not possible for some of us.

so. shoutout to:

• people who can "technically" have children but can't risk the financial stress due to being already disabled/chronically ill

• people who can't get off their medication long enough to conceive

• people with uteruses who have endometriosis or PCOS

• people who can get pregnant, but have a connective tissue disorder which makes them unable to handle the progesterone during pregnancy since it causes flares (hi, it's me)

• intersex conditions that makes you infertile

• anyone who has a terminal illness

• people who've had medically necessary surgeries which caused infertility

• people with genetic conditions they don't want to pass on (me again)

• those who require IVF that's just not in the cards for whatever reason

• and many, many others

• feel free to add on

you're not broken, you have a reason for being like this. i know it's hard. i love you. it's going to be ok. 💙

[gingerblivet]

Hey all my executive dysfunction friends, I’d like to introduce you to a concept that I’ve found helpful in Doing Things That Need Doing

I call it the “Might As Well” Principle

Here’s how it works:

There’s a Thing you need to Do, which is not necessarily difficult or all that time-consuming for you (ie: dishes, laundry, shower, cleaning a room, etc)

The Thing has multiple steps, which make beginning it more daunting than it would be otherwise

You tell yourself that you “might as well” begin whatever the first step of completing the Thing is, without committing to completing any other steps

Once you are engaged in step 1 of the Thing, allow yourself to think “well, I might as well continue, since I’m already here” if the mood strikes you

Take it as far as the motivation lets you

Congrats! You’ve done more of the Thing than you would have by getting bogged down in the number of steps the Thing takes!

It is VITALLY important to note that this is for tasks whose main barrier to completion is the fact that you have trouble starting them. It is not for tasks which require large amounts of time, physical ability, or energy. And that’s gonna be relative for everybody. The examples I listed above are Things which I spend far more time and energy thinking about Doing than I do actually Doing them.

I would also not recommend this for Things that cannot be stopped or half-assed once started without causing an immediate issue to arise. The point is that you use the “Might As Well” Principle to get you started, not to force you to finish if the time, energy, or motivation isn’t there

Anyway, I hope there are some people out there who might find this as helpful as I have

[edenfenixblogs]

Spoons are out. Tickets are in. (/lh)

My mom is disabled from chronic pain and back issues and I was trying explain spoon theory to her.

And she said “who came up with spoons? That’s dumb.” And I said “I dunno. I don’t think it’s supposed to matter. The point is that it’s currency and you have a finite amount.”

And she said “That’s dumb. Tickets are right there.”

I asked her to elaborate.

She said that your activities are carnival rides and you’re at the fair and you only have a certain number of tickets and if you don’t have them you simply cannot ride this ride”

And I said “ok yeah that obviously works too”

And she said “yeah. I’m smart.”

And has been referring to tickets for two weeks now.

She also wants me to add that spoonies, in her new extended metaphor, are now called ticket-holders. LOL

CC @will-write-for-food