I first encountered the Spoon Theory of chronic illness in a book called Furiously Happy (my favorite book in the entire world). The idea is simple: every action you take in a day costs some number of spoons, and if you live with a chronic health condition, you start each day with fewer spoons than normal people and some actions may cost more spoons than they cost a normal person. When you run out of spoons, your day is over and you crash on the couch or go to bed.
The Spoon Theory describes so accurately what has become my daily struggle: somehow making a life out of very limited energy. I used to be an overactive person whose least favorite thing was napping. I regularly ran my husband ragged. But now, between my medications and my constant headache, I can “run out of spoons” and crash at nearly any time of day. A few days ago, I lasted until 11 am. The day after that was a bit better because I at least made it until the afternoon, but then I needed a nap, and I fell asleep at 8 pm that night. Sometimes caffeine and coloring (an activity I used to dislike because it isn’t active enough) can replenish my spoon supply, and other times I have to cancel all of the plans I had for the rest of the day and just lay on the couch. I don’t get any sleep while lying on the couch, because I usually have a bad headache, but I can’t manage to do anything else when I run out of spoons. If I’m lucky, my dog will come and sleep beside me, but those who know my dog know that he often runs out of spoons himself. So, he’s not always a comforting pooch.
Now you know the Spoon Theory, an important piece of chronic illness lingo. But when it comes to my spoons in particular, there are two other things I want you to know.
The first thing is that my spoons are coated in butter. Sometimes they are so darn slippery that I drop them all in a fantastically disruptive manner and all is lost. Take for example our small group Bible study last week. It’s hosted by some friends in the evening, which means after dark during this time of year. I had a great day that day, and was feeling downright normal…until we started driving to small group. Because it was dark, all of the cars on the road had their headlights on, which is a reasonable and safe thing to do. But to me, it was like an army of lightbulbs mounting an attack against my head, and the bright LED headlights led the charge. And just like that, I started getting a headache attack, and dropped all but a few of my spoons. By the time we arrived at our friends’ apartment, I couldn’t lift my head up to look at anyone because I was so aggravated by the ceiling lights. Afterward, we came home and my husband gave me lots of drugs, turned off all of the lights, and sent me to bed. I went from having a higher-than-average number of spoons to having almost zero, all in the course of ten minutes. Very, very slippery spoons.
The other important thing to know about my spoons is they don’t exist. Or that is what I want to think, because I deny my spoons all day, every day. I’d rather experience pain than acknowledge that my boundaries should be different than they were a few months ago. Maybe it’s because I’m new to the world of chronic pain, and I’ll eventually learn to acknowledge my spoons, and how few spoons I have. But does anyone really get used to having so few spoons? I don’t know. It’s hard to imagine I will. I know I should, though, because denying my spoons not only hurts me, but it also hurts the people close to me. My friends and family are very gracious, and they forgive me time and again when I plan poorly, or when I’m downright angry and I throw my spoons on the floor. But when I don’t have the energy to attend a baby shower that I helped to organize, or when I have to cancel dinner with friends for the third time because I refused to take a nap earlier in the day, I remember that I’m not the only person who suffers when I deny my spoons.
What I’m getting at is chronic illness sucks, and it sucks because of spoons. Or, more specifically, the lack of spoons. There isn’t a day that goes by without me wishing I could be who I once was, and have as many spoons as I once had. But I think I’m learning, very slowly, to not define myself by my spoons.
I have never heard it so well expressed what I live with everyday. To be no longer free but to be so mindful of every action and what it will cost. To make plans that have to be cancelled. Everyday not knowing how it will present itself. Having a chronic illness can only be lived with if you know when to slow down. Listen to your body and what it’s saying is a moment by moment way to live. My heart goes out to you. For having a chronic illness is living with gold and who or what will get a piece of your most precious gift.
16 years and 4 kids in and I still deny the spoons and still wish I just felt normal. 😔