My takeaway from the essay was the constant prioritizing and re-prioritizing of every single task that the chronically ill have to do every minute of every day.

and that is how I live

Today i am cooking for the week and doing things that let me move as little as possible. 3 or 4 spare the air days in a row means I can't do any of the big chores that need to be done. I'm hoping that will change by Wednesday

I don't have anything like lupus, so I can't relate to that level of sick.

There are also varying degrees of lupus. Mine's currently been in remission so long that it only shows up on blood tests, but I was never chronically ill even when it wasn't. Either I was in the middle of a flare-up, which meant taking a fuckload of prednisone until I could bend my fingers enough to dress myself, or I was fine.

I'm wondering how many spoons 23 push ups cost me this morning, and grateful I had that many and more.

ION, if I had a spoon right now I'd use it to crush the fly that keeps dive-bombing my desk. God I hate this office.

I am subbing!! Not as a teacher, but as an instructional parapro/aide!! I started today in Emeline's classroom and will be "renewed" every two weeks until the position gets posted and then I apply for it and then I (hopefully!) get the permanent gig! Holy shit, ya'll. Ho. Lee. Shit. I'm working in a classroom!! An honest to goodness classroom! With kids!

Right on! That's your career change right there, missy.

The useful part of the spoons analogy is just emphasizing finite physical resources, and how little things are costly and need to be balanced against, the day and then tomorrow and how No Spoons creates a big crisis which is very costly.

I'm catching up on Lost, since it's leaving Netflix streaming this Friday. I'm currently on S3, and watching the Nikki and Paulo episode. HI-larious.

And I simply don't think that's true. I think "unlimited energy to do whatever they desire" applies to a very small minority, if anyone.

"unlimited energy to do whatever they desire" may just be the writer's perspective, at that time. I gathered from the article that the writer was in college when she wrote this essay. If she's been living with lupus for a long time already, she probably spent at least part of her high school years with lupus, while her friends and classmates bounced around with the enormous energy of the healthy young. I don't think she's comparing herself to, say, 40-somethings who don't have the energy they used to have, but to late-teen-and-early-20-somethings who even to me seem to have unlimited energy.

I gathered from the article that the writer was in college when she wrote this essay

That is a good point that I hadn't considered.

Seska, it's even worse. My mom has fibromyalgia, Sjögren's and a couple other conditions so she feels like "if I can do x, you can do x". No, Mom, I can't. I don't know how your disability works for you but I know what I can and can't do without huge consequences. And honestly? She can't, either. She regularly drives herself into month long bedrest and hospital visits because she does not know when to back off and take care of herself.

I think the spoons metaphor is very helpful. It's imperfect for the reasons mentioned but I think it's largely true that healthy able-bodied young people don't think about what mundane tasks they can do before their body collapses. Before I became disabled, I didn't. In fact, for a number of years after I became disabled I didn't because I hadn't really come to grips with my condition and what it would mean for me.

The good: The gluten-free brownies I made for my co-workers (one has celiac) were so good that they were all eaten up.

The bad: Now there are no brownies left for ME even though I had to stay late.

The lesson: Next time, make extra brownies and hide them.