#Spoonies

[kimberlychapman]

All of my NHS HCWs have been treated like shit by Tories for years and frankly aren't being treated that much better by Labour now, but the fact that I have a couple of really sweet, caring, still-masking HCWs amidst a sea of fatphobic, covid-denialist, non-masking, non-handwashing, anti-immigrant, misogynistic, etc. ones really shows how it's not the shitty system, it's shitty people in the shitty system.

Also, one of the ones who tried to pretend my long covid is not real and is "all in my head" was literally on her first day when she saw me, super green and junior, so she doesn't get to claim that the system wore her down either.

i NEED you to remember this: you are allowed to be angry at your doctors. you are allowed to be furious. you are allowed to be mad at your nurses and technicians and neurologists and psychiatrists and medical assistants. they are not god. they are human beings and they work in a system that wears them raw, and that is unfair, but it isn't an excuse to treat you badly. i'm not necessarily saying you should throw a brick through the window of their car, but you can, should, must be angry with them for ignoring you, demeaning you, dehumanizing you, dismissing you, acting like you're lying, talking only about your weight, failing to acknowledge you past your symptoms, etc etc etc. you are an equal to your doctor. you are a human being and so are they. do not treat them as beyond reproach. you are allowed to be angry at your doctors.

[spacedocmom]

Doctor Beverly Crusher @SpaceDocMom Give yourself more breaks, more slack, more downtime. No, more than that. emojis: black heart, blue heart, masked, spoon 6:44 PM · Nov 10, 2024

[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]

[spookietrex]

[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.

[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

[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.

[fanon-and-canon]

"you always have something wrong with you"

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

[frogsupportanarchy]

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?

[thiefofgenders]

I was talking to a friend and found out this isn't normal for everyone to have so if you're one of the people who don't have an emergency hospital bag, this is your sign to start pulling one together. Hope you'll never need it but make it anyways because if you need it and you don't have one you'll kick yourself. It's designed so if you were suddenly rushed to hospital or had to go to A&E/ER then you or someone you know can just grab it and go. Trust me, it makes life so much easier when you have a bag in an allocated space that anyone can grab for you if you need it. All you need is a bag designed to be hand luggage on a plane. Everyone's is different and it's customisable to you but things I have in mine include:

A list of all my current medications and their dosages

A list of all diagnoses with the medications used for them noted since some medications have multiple uses

A list of any mobility or physical limitations due to disabilities or illnesses

A list of emergency contacts

A list of allergies and what happens when I come into contact with those allergens

My regular doctors and specialists information

A change of comfy clothes including two sets of underwear and socks

Pyjamas that are comfy enough to be in but not too revealing since it's a hospital

Dressing gown (if there's space - if not keep one close to the bag for convenience)

Wet wipes

Alcohol hand gel

Deodorant

Chewing gum

Travel sized toothpaste and toothbrush

Travel sized dry shampoo

Travel sized shampoo and conditioner

Travel sized shower gel

A small tube of hand cream

A small microfiber towel

A plastic bag to keep soiled clothes in

A book to read

A puzzle book with at least two pens/pencils

Headphones/ear plugs

A portable phone charger

Spare phone charger with plug

Small comfort items

Small stim items

An eye mask

A small fan

A bottle of water and some small snacks (no nuts!)

I really encourage everyone to build theirs and regularly check it and update it as needed. Even if you think you're the healthiest person in the world, you have no idea what tomorrow will bring and it's always better to be prepared than left floundering during an already stressful situation. Feel free to add on your own ideas for what people can put in theirs. My list is by no means complete and there's bound to be things I didn't think of

[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.

[spacedocmom]

Doctor Beverly Crusher @SpaceDocMom Everyone's limits and needs are different. Stop beating yourself up because you have health issues that other people don't have or understand. I'm proud of you for whatever you were able to do today for your own needs, within your own limits. emojis: black heart, blue heart, masked, spoon 4:50 PM · Nov 11, 2024

[4spooniesupport]

[chronicillnesshumor]