#chronic advice

[cutsi3kitti3]

my mom and I always say that just because someone breaks both their arms doesn't mean you didn't break your arm🤍🤍

Other people going through “worse” doesn’t mean you can’t be sad. It doesn’t mean you aren’t suffering. It doesn’t mean your pain doesn’t matter. Your feelings and struggles are valid. And things are allowed to feel tough for you.

[redysetdare]

I don't think a lot of people realize that lot of their advice to disabled people often boils down to "Get over it." they are trying to be helpful but their idea of helpful is "Just do the thing" because that's what they do. for them they just do things. It comes naturally to just do it.

They don't know how to bridge the gap between you and the task. For them the bridge is already pre-built and stable. For disabled people the bridge is run down, not well kept, it feels unsteady and is hard to get across without being slow and cautious - hell for some people there is no bridge and we need to build it ourselves but we don't have the bridge building tools and no one gives them to us.

"Just cross the bridge." They say before walking over their pre-built bridge. They never gave you the tools to build a bridge to cross.

[cubbihue]

It would be nice to hear from Wanda and Cosmo! It is kind of nice that you guys have two children like your own family does. Are you two still close to your siblings? Wanda has a sibling and Cosmo also have a sibling just like Timmy and Peri. Do they share some sibling stories to your children?

Wanda and Cosmo both reconnected with their siblings shortly after having Peri. Or, well. More like Blonda reentered their lives once she realized she had a baby nephew. Eventually, they slowly patched things up the more Blonda came to visit Peri.

Schnozmo was dragged back kicking and screaming. Mama Cosma refuses to have her sons live estranged lives now that she has a grandchild in the picture. Schnozmo doesn't know how to handle children, but he's doing his best.

Peri likes Schnozmo because he makes silly noises and funny stories. But he prefers Blonda's theatrics much more and loves playing Dress Up with her.

Bitties Series: [Start] > [Previous] > [Next]

[thebibliosphere]

So in not great news, I’ve developed a trauma response to my migraines.

I just had a faint niggle of pain on the right side of my head—likely caused by my neck muscles being jacked up from yesterday’s migraine and the hours upon hours of throwing up—and while my original response to potentially getting a migraine was weary resignation, I just had what can only be accurately described as a panic attack.

Like full on, couldn’t breathe past my terror, vision tunneling in a way I haven’t experienced since [redacted trauma], ‘it feels like I’m having a heart attack’ panic.

Which is not… not great to begin with but it’s really not good when you have a mast cell disorder where stress can be an anaphylactic trigger, which it is for me, which is why I’ve spent the last for years trying to regulate my nervous system and get a handle on my complex trauma.

Only now, due to the severe amounts of pain I’m in every ten days or fewer, I’m experiencing total emotional dysregulation from the mere thought of having another migraine.

And now I have a headache from the panic attack because it triggered my POTS and now my blood pressure is fucked 🫠

I legitimately cannot do this anymore. This is going to kill me.

[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.

[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)

[poorly-drawn-mdzs]

There's nothing he can't do. Yet.

(Thank you to everyone who participated in the poll!)

[multifariousmayhem]

does anyone else with chronic fatigue feels like the day goes by very quickly? in between the non negotiable rest breaks and stuff like meals suddenly is the end of the day and there was no time at all to do anything

[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-lee-lizard]

Here are some filling foods for when you feel nauseous or not wanting to eat!!!

Eggs

Greek yogurt

Rice

Cottage cheese

Pastas (always a good option)

Chicken (maybe a plain rotisserie if you are needing something not overwhelming)

Potatoes, especially mashed

Soups, the broth helps :))

Overall anything protein-rich will help you feel full quicker. I know on nights when I’m feeling super nauseous but I know if I don’t eat it’ll get worse these foods have saved me lol.

[spoonielols]

[whumpinggrounds]

Writing Chronic Pain

By a person who kinda sorta has chronic pain (I am getting better) <3

First I want to say that all of this is general advice and nothing I could possibly say would constitute a “rule.” Also, this advice is extremely specific to pain resulting from an old injury. My experience is only one person’s, but I thought it might be helpful so here goes.

Describing pain

It is surprisingly difficult to accurately describe pain, especially when that pain is long-term and evolving. My injury was in my knee, under my kneecap, and almost two years out, I still have trouble even identifying if the pain is coming from the top or back of my knee. It sounds small, but it isn’t. Not being able to describe what you’re feeling or where it is can be frustrating and feel invalidating, especially if you’re trying to explain to someone else what’s going on.

It doesn’t always feel like pain, or any words commonly associated with pain (throbbing, aching, etc.) A lot of the time it’s hot, swollen, or even itchy. 

When you’re used to something hurting all the time, your relationship to that pain changes. I started to think of it less as pain and more as discomfort, or an “awareness” of my knee that I didn’t have for other body parts. This isn’t denial - my pain threshold had changed, and what might have registered as pain before didn’t affect me in the same way.

Complicating factors, AKA Things That Make It Worse

Something I never ever see addressed, even though “my old bones hurt when it’s cold” is the most common thing on earth:

My leg also swells and gets worse when it’s hot. Extremes in temperature, generally speaking, are both not good for me, but it’s easier to protect from cold than from heat.

Especially for joints, moving in new ways puts new strain on the injury, and that hurts a lot. You might do PT to recover your ability to run, but that doesn’t mean you’ll be able to jump. In fact, if it’s a knee injury, jumping is probably the last thing you’ll get back. Think the same way about hips, or ankles, or elbows and shoulders. Having one thing back =/= getting everything back.

Some things might never come back. I don’t really want to talk about this, and it’s pretty self-explanatory. There’s a lot of grief that comes with that.

Endurance builds back slowly, and isn’t always linear.

I think everyone knows this already, but there are good days and bad days. They don’t follow any schedule or logic. Sometimes I do something knowing that I’ll be in pain that night, but other times I wake up, sit at my desk for a few hours, and realize I’ll have to take 4 Advil to get through the day. 

Things that help!

Rest! Physical therapy! Painkillers!

Elevating the injury (above the heart) is shockingly helpful. I was always surprised by what a difference it made.

Sleeping in positions that don’t put stress the affected area. Positions that actively support it are even better! Pillows help a lot with this. Sharing a bed with someone...not so helpful.

Before doing something strenuous, heating up the muscles/joints so that it’s less of a shock to the system when they’re used. After doing something strenuous, ice.

A note about ice packs: Even small ice packs can make you very, very cold. When I’m icing my knee, I definitely need warm socks. If I’m icing my shoulder, I’d want something for my hands. A blanket definitely doesn’t hurt.

Effects of being in pain all/most of the time

It’s hard to sleep! Sometimes I will walk around all day without really processing that my leg hurts, and then I’ll lie in bed and realize that I can’t sleep because I can’t stop thinking about my knee. It doesn’t necessarily register as pain, but I have come to realize that not being able to stop thinking about it = it is pain.

It is hard to ask for help, and it doesn’t get easier. In fact, sometimes it feels like it gets harder. People are less understanding the farther out you are from the actual injury - or at least I worry that they will be.

And finally

This one is a HUGE for me.

I know people love to write sweet, long-suffering angels but I really really struggle with that portrayal because

When I am in pain all day/for several days, I turn into a massive fucking bitch. It is exhausting and infuriating and drains me emotionally and physically, even if I don’t notice it happening. I get frustrated easily, I snap at people, and while all my emotions run high, mostly I get pissed off. I understand people want to write the characters they want to write, and I would never ask anyone not to, even if that character is a perfect angel whose response to pain makes me envious and self-conscious. I would (gently) request that such authors reflect on a few things:

Why does your character respond to pointless, unstoppable pain with such bravery or sweetness or stoicism? Where does that response come from, and what does it do for your character and the characters around them? What are the consequences of holding back more “unsavory” feelings? 

I would also (again, gently and respectfully) urge people to think hard about the motivations behind having a character who stays kind and sweet and good despite massive amounts of pain and helplessness. What ideas does this reinforce about pain and martyrdom in the disability community? What messages does it send about how disabled people can or even “should” behave?

That’s all I have for now! Please feel free to ask questions, my ask box is always open. Please also let me know if this is helpful to you - I’m considering writing a few more things about disabilities/diagnoses that I have direct experience with, and I’m wondering if people are interested in that.

Thanks for reading!

[imbecominggayer]

What Makes A Disabled Character "Good"?

A disabled character shouldn't be judged as a failure when they need caretakers and other reliances for the important stuff in life no matter their age

A disabled character shouldn't be mocked as weak or spoiled when they refuse to break their boundaries or be happy

A disabled character shouldn't be shamed when their medical problems impede on their sex capabilities or hygiene or anything else like that

A disabled character shouldn't be celebrated only when they do break the impossible odds since most characters never break the odds

A disabled character shouldn't be dehumanized when they act cheerful

A disabled character shouldn't be treated like a child when they aren't a child

A disabled character shouldn't be forced into leading an "idealic" life that wasn't built for individuals like them

A disabled character needs to be accepted by the author when they fail to thrive, to die, to succeed.

A disabled character needs to be created by an author who understands that life is complicated and that the things they think as "necessary" to leading a fulfilling life may not be in the cards for certain characters

A disabled character needs to be understood by the author as a disabled character who can't do everything an able-bodied character can do.

And when a disabled character is not fully independent, self-sufficient, and thriving, an author should know that even in these circumstances, fulfillment and joy can be found. Disabled people do it all the time.

Many people aren't breaking odds, being fearless activists, and thriving. They struggle. They break sometimes. They succeed sometimes. But in this life, they can find the ability to be content.

[lifenconcepts]

Reminder that you have zero right to romanticise or joke about other people’s mental illnesses or disorders unless it is your own or the individual has condoned certain jokes.

[thebibliosphere]

Aura migraines are such bastards. I don’t get auras too often as part of my warning prodrome, but when I do it’s a toss up if the migraine is going to be silent (migraine without pain) or if I’m going to be in excruciating agony in a couple of hours.

Either way I went blind for thirty minutes as my entire field of vision became a ragged spiral of oscillating rainbows and now I’m just lying here in the dark, warily waiting to see if the pain hits.

Holly Mop is clinging to me like a koala which doesn’t bode well.

God fucking dammit I had shit to do tomorrow.

[thedisablednaturalist]

Watching a seminar for disability disclosure by my university and all the panel members specialize in mental illness/neurodivergence. They only mentioned MS. Everything else they've talked about so far has been about depression or autism. Going To Explode.