Disablity - Blog Posts

Me: Okay, I have really bad joint pain and fatigue. My Sjögren’s syndrome and my pseudogout must be acting up. Google, how do I deal with Sjögren’s symptoms?

Google: You should stay active and get some exercise.

Me: okay, well that’ll be a little tough with how I’m feeling, but I can manage a walk or something. What should I do for the pseudogout?

Google: Rest. DO NOT exercise.

Me: Okay— okay but— but for my Sjögren’s, aren’t I supposed to—

Google: Yes for the Sjögren’s you should be moving moving moving don’t rest too much or it gets worse

Me: Okay well—

Google: But also remember the pseudogout DONT MOVE, don’t do anything, rest rest rest or your joints will be fucked forever

Me: I—

Google: But also get off the couch RIGHT NOW, your Sjögren’s, you need EXERCISE

Me: ….how am I supposed to—

Google: FUCK you

So fun fact when I was a kid my mom decided I wasn’t active enough. So she bought me absurdly expensive running shoes I did not ask for, dragged me out in the below freezing east coast weather, and started me on this “couch potato to 5k” challenge.

Every day after school, we ran. First it was 5 minutes a day, then 7, then 10… you get the gist. I think after 2 months we were running about an hour every day. By the time I quit running when I was 10, my mom and I had run 3 5ks together over the span of a little over a year.

A little after stopped running, I noticed some pain in my right knee. It got a little bit worse, and a little bit worse, and a little bit worse… and then five years later, when it had gotten to the point where I couldn’t pay attention in geography class because I was in constant pain from having to sit all day, I finally went to the doctor.

They told me the cartilage under my kneecap was worn down from overuse. It’s called chondromalacia patellae—also known as “runners knee.”

The thing is: When we were in races, and I was overwhelmed, I told my mom I wanted to stop. I told her I was in pain and I needed to slow down. I told her I didn’t like running.

And you know what she said to me?

“Suck it up.”

And I’m not saying “don’t tell your kids to exercise.” Your kids SHOULD exercise—not because of any bullshit weight reason or anything, but because they’re kids, and it’s good for them. Good for their bones, or whatever.

And I’m not saying “don’t exercise WITH your kids” either, because again, they should be exercising a little. And if you being there helps them stay motivated, that’s great.

What I am saying is: Listen to your kids. Trust that they know their own limits better than you do. Even if you think that they’re being over dramatic, or whiny, or whatever—don’t take the chance.

I’m 20 years old now. My knee still hurts. I have a whole suite of other, unrelated chronic conditions that would be improved if I exercised more. And I try to, I really do. But it’s kind of hard to do squats when just one makes your knee feel like it’s on fire for the rest of the week.

Listen. To. Your. Kids.

Got the results for my blood test back

The Difference a Day Makes by Clowns_or_Midgets, snarkymuch

Peter thought he'd hit rock bottom, but maybe it needed to happen so he could find himself again. This is a story of making peace, of trusting those around you, and holding onto threads of hope. The sun will always shine again, even after the darkest of nights and hardest of storms. With Tony beside him, he might just make it through to morning.

--

"You know, I thought I was losing everything when you told me I was losing my powers, I thought that was the end for me. I couldn't see a life past that. It felt like I was looking at death." He laughed, shaking his head. "I was dead wrong. I was so damn stupid. This ... this is ..."

A sharp pain stabbed Tony in the chest. "This is what dying is like?" Tony put a voice to what he knew the kid was saying, though it hurt to do.