Life With IC

Living with the chronic, incurable disease Interstitial Cystitis/Painful Bladder Syndrome is a tough load to bear. Sharing what works, what doesn't, and a little IC gallows-humor helps lighten the load! This is a secondary blog, so I'll be liking and following through my primary, SeenInSC.

[lifewithic]

Instagram VS Reality: spoonie edition 😹the left is before going out and "doing a thing" on the weekend, the right is in "spoon recovery mode" the next day, immediately after posting the pic

[youngchronicpain]

How my body feels when I finally get to lie down after leaving my house

[lifewithic]

Me: I'm feeling good!

Them: Oh, so nothing's hurting or anything?

Me: Haha, no I'm definitely still hurting all over. It's just not as bad as usual, which is my version of feeling good.

[lowspoonsfood]

So are spoons like energy, like "i have very few spoons left" means that meal is too much effort?

You’re right. Basically, spoons = energy.

The idea originally comes from this essay by Christine Miserandino. It’s a way to explain how having a disability or chronic illness can limit how much energy you have and how much you can do in a day.

-Lace

[lifewithic]

My cat gets it. 😂

[lifewithic]

Spoonie Sue Says: Scarf > Bra

When you have to run an errand but you're too tired to change out of Spoonie-Clothes, don't waste spoons taking off shirts and putting on a bra and putting on shirts again, just throw a big fluffy scarf on and head out the door!

[flyingpurplepizzaeater]

*when you don’t have the spoons to ask for accommodations for your lack of spoons*

[tuesdayisfordancing]

too disabled to be this disabled

[lifewithic]

You know you're a spoonie when...

"Just do it. You got this, you can do it girl. Just get in there and git 'er done. Don't give up, I believe in you." -pep talk to myself before taking a shower

[plantbot-deactivated20140901]

as a skinny person, you are catered to and you don’t even realize it. did you ask for that? no and i understand that. but you will never cry your eyes out in a dressing room because even the largest size doesn’t fit. you will never deal with rejection from a guy solely because of your weight. you are socially accepted. is any kind of body shaming disgusting? yes. but please don’t act like you’d rather be fat. 

[forest-of-grace]

Ah yes… I remember not having a crying fit in the dressing room when I was 17 because none of the prom dresses fitted me right because they were all too big or didn’t fit right in certain places.

I’ve never ever been told that I’m undateable because I have no ass or tits. I’ve never been mocked for my size and been called skeletor. I’ve never in my life been compared to a pre-pubescent boy or that anyone who dated me might be accused of being a child predator lol.

No, I don’t want to be fat but don’t act like my problems aren’t as big as yours because you don’t know what girls like me deal with

[lifewithic]

Yes

[plantbot-deactivated20140901]

as a skinny person, you are catered to and you don’t even realize it. did you ask for that? no and i understand that. but you will never cry your eyes out in a dressing room because even the largest size doesn’t fit. you will never deal with rejection from a guy solely because of your weight. you are socially accepted. is any kind of body shaming disgusting? yes. but please don’t act like you’d rather be fat. 

[littleprincessababe-blog]

No, but I know what it’s like to cry in a dressing room because every bra that really fits me makes me look flat as a board & all the other girls at school comment on it, every single day.

[sunstonerprincess]

Yes, just because some people are skinny means their lives are perfect and shiny and rainbows because I’m a socially acceptable size. Fuck you and your sterotypical bullshit. Just as I will never know what it’s like for the biggest size not to fit, I’m sure you will never know the shame of having to shop in the kids section because your too small. I’m sure you will never be accused of starving g yourself or puking. I’m sure People won’t make fun of you for not having a body shape at all. You are no better for putting skinny people down than skinny are for putting you down.

Everyone is someone and deserves to be treated as a someone.

[lifewithic]

I agree

[ghkgyudzqkjjk]

Question for dating spoonies!

I’m wondering for spoonies who are in a relationship how long did you wait until you told them you were sick?

[lifewithic]

Started slow on first date with hints like "I have a medical...thing...it affects my bladder"... second date"im tired today...I have this medical issue, it affects my energy" third date "I have to be careful sometimes because of the medical thing..." A good person will be understanding and interested but not prying or judging.

Having chronic illness does help you weed out the bad people, for example, the guy who I mentioned having a chronic medical issue to that affects my abilities on the first date who said, "so are you gonna make it? Are you gonna live?" And then changed the subject...

[thischroniclife]

Spoonie life in a nutshell...

[the-chronic-way]

can the term “paingry” be a new thing? because I’m pretty tired of explaining why my mood sucks on bad pain days

[alupielady]

Yes, love it… I’m paingry!

[lifewithic]

Me whenever I say i'm in pain bc of my disability:

friend, family member, random person, etc...: you know what you should try?

Me: hoe don't do it

Them: you should definitely look into yoga! its benef-

Me: oh my god

[artsciencenursing-blog]

When I hear someone mention something medical in conversation

[h413y-blog]

It’d be great if when I said I was sick or not feeling good people stopped saying, “but you’re always sick” or “you never feel good” like yeah I fucking know and I feel like shit about it so stop fucking reminding me.

[authorizedpope]

It just occurred to me that I no longer think of my health in terms of “I hope I’ll get better” but instead I just think “I hope I don’t keep getting worse,” and isn’t that just kinda fucked up?