#Spoonies

[lifewithchronicpain]

Many patients have horror stories to share about their experiences in hospital emergency rooms, where they’ve been treated as drug seekers and denied opioid pain medication.

“I had a broken arm and was given nothing for pain when leaving the emergency room,” one patient told us. “They now treat everyone like a drug seeking addict even if you have legitimate pain!”

“My last ER visit has caused me PTSD. It was awful they put me in a room and turned the light off and left me there for hours,” said another.

“The emergency rooms are horrible,” said a patient with a fractured rib. “I wasn’t even asking the ER for meds. I wanted an x-ray or something because I was in excruciating pain.”

A new study found that the risk of developing addiction or opioid use disorder after being treated with intravenous opioids in the ER is quite low – less than one-tenth of one percent (0.002%).

Out of 506 patients treated with IV opioids in two Bronx emergency rooms, only one met the criteria for long-term or persistent opioid use six months later.

“These data suggest that the use of IV opioids for acute pain among opioid-naive patients is extremely unlikely to result in persistent opioid use,” wrote lead author Eddie Irizarry, MD, an emergency medicine physician at Montefiore Medical Center.

I’ve had many an ER visit in the past where I needed an opioid and they kept refusing until eventually they realize that I really do. It was fucking torture and I’m so glad I don’t have those flares anymore that put me in the ER.

[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

[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.

[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]

Just a little gift giving PSA to all secret Santa’s, I know it can be hard if you don’t know the person well, but don’t default to perfume or cologne because you can’t think of anything else, especially if you’ve never smelt a whif of anything on them. Said on behalf of a scent sensitive mom who always got perfume in any secret Santa.

[4spooniesupport]

[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