I've mentioned spoons, spoonies, and spoony culture throughout my posts, so if you're wondering what I'm talking about...
The Spoon Theory was developed by Christine Miserando, a woman from NYC who lives with Lupus. You can find it in her words here. Her friend asked to understand what it was really like to be sick all the time. They were in a diner, so she grabbed spoons from all the tables and started a visual metaphor -- you have a certain number of spoons today. Every time you do something, it uses up a spoon. Get out of bed? Spoon gone. Get dressed? Spoon gone, although with joint pain, getting dressed some days might take an extra spoon. Want to go see friends or go to work, that'll take three or four spoons at least. As she demonstrated the scenario, her friend became anxious because they weren't halfway through her day yet, but almost all of the spoons were gone.
The thing is, most people have an almost unlimited number of "spoons" (energy, health, etc), so they can make plans for the day, or just spontaneously do things, without ever worrying about how many spoons it'll use up. They'll never run out. For people with chronic illnesses, we have very limited spoons, so we have to budget out the spoons strategically. If you run out, the illness flares and you crash, which could mean you're out of commission the rest of the day or even for several days after. We live in fear of running out of spoons, so every decision we make throughout the day requires careful planning, and may have to be changed last-minute if we start running low on spoons. Sometimes you can save up spoons -- take a really low-key day to save up for a fun event the next day. Every now and then you'll get it wrong, with disastrous results, and there's an added layer of self-frustration at not having been more careful.
This kind of thinking ahead is part of what makes chronic illness so exhausting. If you have friends with chronic illness, try to understand when they can't commit to plans, or seem to be nervous when planning fun activities. It's not that they don't want to see you -- they are worried about their physical and emotional well-being, and for good reason.
Because this metaphor resonates so deeply with the chronic illness community, they've adopted it as their sub culture; many (myself included) now call themselves "spoonies." Here's a cool visual that helps explain it further:
For a recording of Christine telling the story: