And lo, after four days of merriment and Revelry (Get it? Revelry? Cause Inspector Spacetime and I went on a big overnight to the Doomed Revel casino in Atlantic City???), my body goes kaput. Now, I’m sitting here in our rented beach flat, missing Little Fickle’s first kite-flying expedition, because every time I move around I feel like barfing. This is what happens when you have a chronic illness. You try to keep up with the crowd, and then your body takes over, tells you it’s had enough, and instantly you become an 80-year-old housebound recluse.
In the lupus community, there’s a well-known blog post about chronic illness and the “spoons” theory. The idea is that you start out the day with a number of spoons, with spoons representing the energy you have that day. People, especially Young’uns, with no health problems have a virtually unlimited number of spoons, while lupus patients only have a certain quantity. Once you spend all your spoons on daily activities (and for Christin Miserandino, the author, getting up and showering already costs you a couple of spoons), you’re done for the day. You have no energy left. You have to lie down and sleep for twelve hours. Or, at least, that’s what happens to me. I’m an utterly terrible Spooner. If on some day, I have a mysterious quantity of extra spoons, I’m giddy. “Yay, spoons!” I think to myself. “I’m a normal person again!!!” Then I go out and spend spoons like crazy for a few days at a stretch, and then comes Crash Time, when I lie around Internet surfing and bemoaning my overall uselessness.
Granted, this is not in any way a model for dealing with chronic illness. I have a mild case of lupus, and for a long time I could skate by on denial. But now that I’m an old coot and a mom, I can’t do that anymore. I have to suck it up and admit when my body is frayed. Also, there’s been a bit of blowback against the Spoons theory: the author of this post–a blogger with the handle “it was lupus,” which if you’re a House fan you gotta love–claims the spoon thing is just a grab for self-pity and a way to rationalize not taking care of yourself particularly well. Could be. But then, lupus is also a highly subjective illness. Symptoms differ from person to person, as well as the psychological impact of those symptoms. I’m not one to point fingers at who’s right and who’s wrong in dealing with their illness, but if you’re someone like itwaslupus who can juggle all the demands lupus makes of you, and you can still say, “screw you, lupus, I’m not defined by you,” more power to you. I wish I was still in that camp myself.
Nana Lemon and Grandpa Fickle just came back. Apparently, tomorrow there’s a 60% chance of rain here in Ocean City. So there may not be any last-day trip to the beach, which is kinda what I was saving up my Pity Spoons for. Oh, well. Can’t push yourself when your body’s already shredded.