Have you heard of the spoon theory?
Essentially, two girls were in a diner, and one was trying to explain how she felt, what it was like living with a chronic disease or chronic fatigue. She ran around the diner and grabbed all the spoons and gave them to her friend. She then talked her through a normal day, and for every activity that required energy, she took a spoon away.
Wake up, and take a shower. There goes a spoon.
Make breakfast, so there's a meal in your stomach to cushion the many pills you take, that's a spoon.
Throughout the day, she slowly lost most of her spoons, until they got to the end of the day, when she had one spoon left. Make dinner, or do laundry? You can't do it all, you only have one more spoon.
I stumbled across this theory a week or two ago, and thought it was really interesting. What I didn't like was the culture of "spoonies". People who are living life like this, who feel like life takes something tangible every time they do something, connect and call themselves spoonies. To be honest, I mostly didn't like the culture because a woman online snapped at me, and was very rude, while identifying herself as "another heavily-medicated celiac spoonie" as if that was some excuse for her terrible attitude. I looked into the culture a little more, and anyone who identified themselves as a spoonie on their public profile bothered me. They were either rude, self-centered, or hiding behind this label as an excuse.
As I slowly processed it all and examined my life, I realized I was one. I used the word "go-juice". I'll frequently tell M, "I'm running out of go-juice". He's heard that all the time. He also watches me lay on the couch and beg him to do something as basic as grab me a glass of water. Sometimes he calls me lazy, sometimes he understands that I'm just sapped. What he doesn't understand is later, when I get up and have enough energy to do something else. It's not that I'm completely worn out, or exhausted. I'm weighing the pros and cons of whatever task I'm facing against how much energy it's going to take. I am aware that my energy is limited, and it's quite tangible to me. Even when I wake up in the morning, I know I only have so much energy to get through my day. Sometimes I have more, sometimes I have less. There are certain things I can do to get more, and certain things that I usually skip over to keep as much energy as possible.
As I came to the realization that I am, in fact, a spoonie, I started using the word "spoon". I've been telling M things like, "But that'll cost me two spoons" "I don't have a spoon for that" "That's worth the spoon".
I'm not going to identify myself as a spoonie. I'm not going to hide behind that word and use it as an excuse for everything negative that I do. I am, however, going to remind the close people in my life that my energy is a tangible, real thing, that slowly goes away, whether or not I like it. I am going to use the spoon theory for exactly the same reason the first girl came up with it. To explain to all those normal people out there how I face every day, and why I make the decisions that I do. It's not that I'm lazy, or even sleep-deprived. It's just that I'm out of spoons.
I wish I didn't have to use the word "spoon". I keep looking for something else, just so I don't have to identify with all those jerks, but I haven't found something quite so understandable and tangible. I like go-juice, but juice is liquid, viscous, and refillable. I think I'll stick with "spoon" for now. A lot of people have heard the spoon theory, and will understand, so until I find something that rocks my socks, I'll keep going through spoons.
There's this moment that happens almost every day, sometimes more than once a day. When I am still, laying on the couch, sitting in the car, sitting in my chair at work, and the time comes that I have to get up. I stay still for a moment longer, and mentally go over my bone-weary body, feeling all the spots that are just wiped. I feel the dull ache in my back, I'm hyper-aware of my stiff joints, and then I think about whatever it is I'm about to do or want to do. Sometimes I sit still a moment longer, and that's when I know I'm a spoonie. When I take that moment to go, "Is it really worth it?" Whether "it" be a glass of water, a grocery shopping trip, or even just the act of getting up. It drives my husband nuts. We'll pull up in the car to wherever it is we're going, and he'll jump out, and then realize I'm still in the car. He'll walk around to my side, and I'll just be sitting there, staring at my purse in the back seat. I take a deep breath, reach back, grab my purse, and go. He used to get frustrated, but now that I've explained how I'm feeling and dealing, he understands. He'll often open my door or grab my purse for me. The moment to breath gets longer and longer as the day goes on. Early in the morning, it's a few seconds, but late at night, sometimes I'll tell him to just go in without me, because whatever it is just isn't worth what it's going to take from me. That's all just in the car, but this also happens at work, when I realize I need to grab a paper from the printer, take a message to somebody, or even just pour myself a cup of coffee. I'll put it off, I'll sit still, I'll take a moment to breath. And it's the worst on the couch. Once I lay down, there's almost no getting up. I can rationalize myself out of anything if I'm laying on the couch.
Thing is though, I've been doing this for at least year and a half. When I worked my old super-boring job, I missed a lot of days doing this. I'd be sitting/laying somewhere, and think about going to work, and ultimately decide the energy it would take wasn't worth it. I wasn't necessary for the workplace to function, and if it was going to take just a bit too much from me, I wouldn't go. I would stay put. I'd talk myself into going often enough that I kept my job. My boss understood, and when I was diagnosed, he understood twice as much. I couldn't have explained then how I felt about my energy levels, but he understood anyways. Now that I am necessary for the workplace to function, I haven't talked myself into not going, not even once, to either job. But I talk myself out of other necessary things, just to sacrifice that bit of energy for work.