I wish my body would like... work

I’ve been in a body that experiences a lot of pain and frequently malfunctions for so long that I really don’t have a gauge for normal bodies anymore. How long can a healthy person stand? How long can they walk? Is there a point where they can’t sit anymore because they are in so much pain too???

Is this a side effect or should I be worried? A 3 part series.

When a disabled person says they can’t do something, there’s probably years of suffering behind that statement, and a slow painful journey towards accepting that fact, but people wanna act like disabled people just wake up one morning and decide they can’t do anything.

I make jokes about my medical issues because it’s easier than facing the fact that I’ll be living in severe pain the rest of my life.

Same.

Now this is funny.

Spoonie life

When you’re already worried about feeling rough the next day so you start laying the foundations for cancelling plans

A chronic illness phenomenon

I think there’s this weird phenomenon in life, specifically in the chronic illness community. It’s a place some of us get stuck in - the in between. A place where you’re too sick to function in the “able world” but at the same time you seem to healthy for the chronic illness world. You almost faint but you don’t. You’re always in pain but it’s relatively tolerable. You’re not bad enough to qualify for surgery even though you’d benefit. You forget everything but you don’t lose time. Your heart rate is too high to be normal but not high enough to be critical. Your BP is low but not THAT low. You try to find answers but seem relatively okay to doctors so they don’t want to run more tests. You’re stuck in a place where you almost wish you were sicker so you could get helpful treatment.

No amount of sleep could cure the tiredness I feel. (Depleted)

I really appreciate the fact that famous people like lady gaga and selma blair are speaking out on the issues that chronically people, specifically women/female presenting people, face. If these people who can afford the best possible care and have so much privilege are discriminated against like this imagine how it is for the rest of us.

If this doesn’t scream a spoonie truth, I don’t know what does.

every time a drs appt solely consists of “there’s nothing left i can do for you [shrug emoji]”, they should pay me the copay.

Sometimes I forget that most people aren’t living in constant pain. I forget it’s not normal to have part of your skin feel like it’s on fire out of nowhere or to have agonizing joint pain. People are going about their lives the same way I am but they aren’t in constant pain. I forget that. And I wonder what it would be like to live like that.

Trying to work out in advance just how many spoons you’re going to have to use for each daily task.