If you’re reading this, you probably know exactly what I mean by “spoons” and why I’m talking about them. Try as we might, when we talk about chronic illness, we generally won’t reach an audience of well people. A healthy person in a generous mood may humor us for a few minutes, long enough to pick up the sense that being sick sucks. Let’s face it, though. A healthy person’s priority is never going to be dedicating hours of time to talking and thinking about illness. For all we know, their Charitable Listening quota was already extracted by a dozen other ill people earlier this week. We can take a moment to be glad for them. If we care about them, we wouldn’t wish our conditions on them. Well people are like fuzzy little ducklings. Aren’t they adorable?
Now I’ll pause and list off my chronic illness credentials. It’s like flashing a gang sign. If I were better at drawing, I’d make up hand signals for: fibromyalgia, thyroid disease, migraine, TMJ, carpal tunnel syndrome, vasovagal syncope, childhood-onset insomnia, bruxism, restless leg syndrome, confusional arousal, and pavor nocturnus. (Not a complete list). I had a cancer scare. I’ve swallowed radioactive iodine and been on beta blockers. I’ve had my thyroid scanned and had an EKG. I’ve had so many ultrasounds on so many body parts you’d think I could cash them in for a free baby. If I brought my parrot to appointments, she would definitely be able to say, “I don’t know what to tell you.”
The other thing my bird would be able to say is, “You don’t know what it’s like.” Chronic illness is something of a competitive sport. Quite frankly, none of my stuff “counts.” My four-day migraine is nothing compared to so-and-so who was hospitalized for migraine. My running around the house sleep-screaming and slapping myself until I bleed is mildly interesting, but at least I don’t need a CPAP. See what I mean? I have several friends who have fibromyalgia. Only one of them is actually willing to talk with me about it. The fact that I’m not symptomatic anymore makes me some kind of poseur.
A friend of mine wrote the other day that ‘healthy lifestyles’ are now an acceptable means of moral judgment. This makes me want to beat my head on the wall. So, you’re talking to someone who feels better than you do, and you don’t want to hear about it? WHAT IF THAT INFORMATION COULD HELP YOU FEEL BETTER? It's like we were both wrongfully convicted of a crime we didn't commit, and I'm offering you the business card of the lawyer who got me exonerated, and you respond as though I had just accused you of being a criminal after all.
The first thing about having a limited number of spoons is to FIGURE OUT HOW TO GET MORE SPOONS. Waiter, Table 12 needs some EXTRA SPOONS please. If I only have one spoon for the day, I’m going to use it to Google information on spoon acquisition. The next day, I’m going to put my spoon toward getting a second spoon.
The thing about chronic pain is that it’s a super power. Guess what? You have the ability to withstand extreme pain for incredibly long periods of time, AND LIVE TO TELL ABOUT IT. Heck yeah! Here is the order form for your cape and boots.
I married a big, strong, alpha male who began participating in team sports around age 4. He played football and hockey and he was actually a lumberjack. Basically my exact opposite in every way. What I found out about big strong athletic people is that they endure chronic pain, too, but they take it for granted and they don’t let it stop them. A game I play when I meet athletic people is to ask about their sports injuries, surgeries, and chronic pain areas. These lists often sound hauntingly familiar. I started to wonder if I had it in me to be an athlete as well.
Come to find out, I did. I ran my first marathon in October 2014, 16 years after being diagnosed with fibromyalgia. I couldn't walk the next day, but neither could anyone else who ran the course.
Recently an acquaintance asked if I would be willing to correspond with one of his clients who has fibromyalgia. We wrote back and forth several times. She said it was encouraging for her just to know that someone with FM could run a marathon. She wanted to pick my brain about how I got better, and she had tons of questions. Many pages into our correspondence, she mentioned that she spends a lot of time in a recliner. I hate recliners because they push my head and neck forward; I find them so uncomfortable and pain-triggering that I prefer to sit on the floor. I suggested that she reconsider the recliner and experiment with other chairs for a few weeks. I never heard from her again.
Whenever I hear about anyone being diagnosed with a chronic illness, I fret. Sometimes I cry. I can’t bear the thought, even if it’s someone I’ve never met. I want to come bursting through their wall with a flaming sword and defeat the foul demon that is ruining their life. I want to back up a dump truck full of spoons and start pouring them over the back fence. Spoons! Spoons for all! When I hear that there is no cure for something, I think, “Yet.” Surely we’re not going to lie back and… and… submit! We’re not going to let it win – that would be a travesty. Unfortunately, this is not the attitude that is preferred. We want sympathy. Trying to fix the problem is not considered sympathetic. From what I gather, suggesting that there is a way out of this thing is elitist, controlling, condescending, moralizing, and rude. Hey, saying I got better is not the same as saying I am better.
I got better by accident. Little by little, I stumbled across information and learned what my triggers were and how to avoid them. I learned how to adjust my sleep and activity level and food intake in a way that leads to better functionality. It turns out there are dozens of different inputs. It’s complicated, but not impossible. I still have occasional bad days. I’m never going to forget that spoons come in finite quantities. But I have enough to share now.
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I've been working with chronic disorganization, squalor, and hoarding for over 20 years. I'm also a marathon runner who was diagnosed with fibromyalgia and thyroid disease 17 years ago.