Tag: chronic illness

One ridiculous side effect of my legs skinnying up enough that my thighs don’t meet even sitting with my knees clamped together: dropping stuff!

As I was just reminded again, I had better not try to set anything smallish on my lap temporarily, or it’s liable to make a floor escape through the Lap Crack. Including paperbacks thinner than The Stand and my phone, often as not. One other favorite: scissors you want to use again very shortly!

Bonus: when it hurts to pick the crap back up out of the floor.

Yet I keep forgetting and automatically doing this anyway 🙄 Because of course I do.

sapphic-pink-kryptonite:

As someone with fibromyalgia severe enough to have me on a walker or bed-bound, it took ten years (beginning about age 15) for diagnosis because I was told I was being dramatic or just needed to try harder. In that time, with no alternative, I worked and suffered through numerous intense manual labour jobs.

Because I didn’t listen to my body, I have long term damage that can’t be repaired. I was only taken seriously when I ended up in hospital for a week about two years ago. It should not have had to go that far.

I’m telling you, one spoonie to another:

“Push through the pain,” isn’t an option when your body trying to tell you something.

Chronic pain (even without a diagnosis) is real and serious and needs to be treated as such. I hear you, I believe you.

jenroses:

A couple people have asked if they can use the Fork Theory if they’re not (fill in whatever, I don’t care.)

The short answer is, “Of course.”

I’d like to just say that gatekeeping takes up too much energy, uses too many spoons and sticks forks in people.

Both hubby and I deal with chronic mental and physical health issues. Mine are more obvious–severe rheumatoid arthritis on top of a stack of other issues will do that to you. But “running out of spoons” happens even to people who do have the physical ability to exercise, for example. Just because someone starts out their day with more spoons, or bigger spoons, doesn’t mean they can’t run out. And EVERYONE has a fork limit. 

This was designed to be a corollary, not a substitute, and I would not for a second limit who could use this idea. Everyone, disabled or not, has limits to what they can take. 

In fact, the difference, in many cases, between an able-bodied person and a disabled person, between a person without mental health diagnoses and someone with mental health diagnoses is very small, and can be encompassed by one word.

The word?

YET.

You live long enough, life is going to throw trauma your way. You live long enough, you will experience disability. 

And if you don’t, well, apparently you are terminally unlucky. 

Seriously, gatekeeping this particular thing is a zero sum game and I really wish people wouldn’t. We need the curb cutter effect of able-bodied people understanding our metaphors. Of being able to shorthand something and have someone else go, “Ah, I understand.”

It’s tempting for me, with how disabled I am, how much more disabled I’ve been at times, to think, “Oh, no one could really understand how bad this is” with the undercurrent of (I assume I’m handling this badly compared to everyone else, but if I’m the only one feeling this way, and others don’t understand, then it’s not my fault.)

The fact of the matter is that disability is hard, and isolating and literally anyone who went through what I have gone through would have a hard time with it. I don’t have to feel guilty about not dealing very well with it.

My sister said to me once, and it stuck with me forever, “This shit is objectively hard.”

And yeah, RA is. Lupus is. Thyroiditis and Ehlers Danlos and allergies and asthma and sleep apnea and depression and isolation and dealing with the current political situation and worrying about money and stressing about jobs and kids and and and and… this stuff is hard. Lots of people can deal okay with a couple of issues, some people deal gracefully with some huge issues and most of us? Just muddle along doing our best and it would behoove us to assume that others are also trying. 

We discover in our online communities commonality of experience, that we are not alone in our not-dealing-very-well, that when some people are dealing better it may be because they have more resources or know information that they can share with others. 

If we forget that the reason we come together is for understanding, and start to shut people out… we’re just part of someone else’s bad day. And I’d rather not.

(Oh, and as for the knife theory, it’s pretty damn simple… in this context, knives are the things you bleed from when you pull them out, the things that make triggers, the lasting traumas, the actual aggression. They’re the things you may need medical or mental health attention to heal from.)   

‘Fake It Till You Make It’ Doesn’t Work With Chronic Illness

thatchronicfeeling:

Instead, the options are:

‘Fake It Till You Are So Ill You Can’t Get Out Of Bed’

‘Fake It Till You Have A Flare’

‘Fake It Till You Have A Flare, Continue To Fake It Till You’re Hospitalised‘

OR

‘Accept That You Have One Or More Chronic Illnesses, Adapt Accordingly And Look After Yourself’

quecksilvereyes:

neuroticgaymusings:

marigoldwitch:

Growing up my parents taught me that if you’re too sick to [insert responsibility here] then you’re too sick to [insert something that makes you happy here].

It took me a really long time to unlearn this. When I would get sick or have a “bad day” I would deprive myself of anything that made me happy. Watching movies, eating something I enjoyed, going for a walk, playing video games or just browsing online looking at funny cat videos. I wouldn’t let myself do these things because I was always told that if I’m too sick to go to work, or do homework, or go to school then I must be too sick to play Mortal Kombat or watch Unsolved Mysteries lol.

Whenever I wouldn’t feel good, which I later learned as an adult was due to sleep deprivation caused by my ADHD and depression (and of course the depression itself would cause me to feel like shit), my parents would tell me “if you’re not throwing up, then you’re not sick.” And when I would stay home from school (or even work in my later teen years) my parents would make sure that I didn’t have any “fun.” No TV, no movies, no games, no going outside, no arts and crafts, no books, no nothing. Just lay in bed and feel miserable.

I’m happy to say that I no longer do this to myself. Now when I’m having a bad day or I’m sick (cold, flu or whatever) I allow myself to do the things (within reason lol) that I actually love doing. If I’m not too sick to step outside for a few minutes then I’ll go for a walk. I’ll watch my favorite movies and if it’s a bad day or a cold (something that doesn’t hinder my appetite too much) I’ll eat my favorite foods. I don’t guilt trip myself anymore for having a “sick day.”

Just because you’re sick (whether physically, emotionally or mentally) doesn’t mean that you can’t do things you enjoy. You’re not any less sick because you watch TV. You’re not any less sick because you’re playing video games. 

Actually you SHOULD be doing these things when you’re not feeling good because they make you feel better. The better you feel, the faster your heal. 

Thank you! I needed to read this.

oh.

youngchronicpain:

For everyone who has chronic pain or a chronic illness that will hear the same questions of “what do you…do?” and “are you feeling better now?” from relatives you never see today, remember that they have a minimal understanding of what you are going through and you are amazing for surviving this life. That’s what you are doing, surviving. You deserve life and happiness no matter your level of ability. So rock those mobility aids, take those meds, and ignore all the ignorance that you will be forced to listen to. 

spoonieofmayo:

[CAPTION: tweet from username cripple skye @disabilisaur: what gets me about my disability isn’t that I can’t do stuff. It’s that I DON’T KNOW if I’ll be able to do stuff. Doing a thing can either put me in bed for days, it can be totally fine, no big deal, or randomly make me feel BETTER. 24 hours later the rules change again.]

eucyon:

liv-abetic:

thatonebaritonechick:

mycharliequinn:

going to the doctor when you’re chronically ill is weird. 

It’s like imagine everything in your house is on fire, and you’re standing there and the fire department come in like, describe the fire to me and maybe we can find what caused it and put it out. 

and you can’t just say everything so you’re like… well the fire in the curtain is the biggest
but the fire in the photo albums might be doing the most damage
also the fire in the couch is really inconvenient 

occasionally the fire guy is like, well your tv is on fire so it might be electronic-fireitus but that would cause other things like fire in the dvd player 

and you’re like, oh yes. that’s been on fire for years. I forgot to mention it because it’s always been a relatively small fire. It’s right next to the bookshelf which has much more fire. 

and then the fire guy is like, oh. I wouldn’t worry about that. book shelf fire just happens sometimes.

THIS. THIS IS EXACTLY WHAT ITS LIKE @chemistthatfangirlsoverchemistry

Best metaphor I’ve ever heard

“Are you sure you’re not just thinking everything in your house is on fire because you’re overweight? Why don’t you try to lose a few pounds, then come back and we’ll see if these things are less ablaze for you.”

And if you somehow manage to convince them to actually test for fire: “So it looks like your house is on fire, buuuuut…you should still try to lose some weight! Now, with your particular fire producing lots of smoke and reducing the air quality, it’s going to be difficult for you to exercise and you’ll see very little to no progress most of the time. Still, try to make the effort! :)”

Can’t forget the antidepressants. You just think there’s a fire due to antidepressant deficiency plus fat!

(Or something like that. It’s honestly hard to make much sense of, most of the time.)

* ETA: Not trying to discount actual depression or any other condition that might reasonably help, btw. There’s a major difference between that and, say, asthma or joint problems.