Yellow Grippy Socks

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.

“How are you?”

I feel bad for anyone who asks me this question recently. The best I can do is a give vague, single-word answer, such as “vertical,” “headachey,” or “tired.” On a bad day, I get angry and snap when asked this one simple question.

And I get it, I shouldn’t be so picky. The phrase “How are you” is a colloquialism that serves as a drop-in replacement for “Hello.” Most people (in America, at least) don’t expect to hear a long story in response to the question, “How are you?”. What they expect is for you to say “Fine” or “Good” or “Okay” and then everyone moves on with the conversation. But chronic health issues aren’t simple, and they can’t always be summarized into a conversation-friendly size. Sometimes all I have to offer is a long, venting story. Or maybe I was in the ER yesterday and the experience was so overwhelming that I don’t know where to begin. Then- just like that- I’m a conversation showstopper! And it’s not the case that every single soul who asks “How are you?” is ready for me to hijack what they thought was going to be a short and sweet conversation. So I get stuck, and angry that I can’t handle simple things anymore. And if I don’t have a one-word awkward answer coming to mind, I dodge the question like this:

Other Person: “Hi Natalie! How are you?”
Me: “Ohhhhh hi there! How are yoooouuuuu?”
Other Person: “I’m good! I spent the weekend doing blah blah blah…”
Me: *phew*

It’s the great “you” reversal!

But what the heck are you supposed to say if you want to know about my physical, emotional, or overall state of existence, and you don’t want me to get stuck? Here are some ideas for you…

1. Give me yes/no questions. They are easy to answer even with only 3 hours of sleep, so these are my favorite. Is your headache very bad right now? Are you in a good mood? Have you been sleeping well? Is this week so far easier than last week?
2. Ask about specific points in time. What happened last night after we last talked? Are you in a lot of pain right now?
3. Infer how I’m doing from how I answer other questions. How many doctor appointments do you have this week? How long has it been since you managed to go on a walk? What are you allowed to eat?
4. Don’t ask any questions! If you really just mean to say hello, then just say hello! Or give me a hug (or a 🤗, if over text). Or if you are a praying person, tell me you are praying for me. I won’t emotionally barf all over you unless invited…most of the time.

You may find these ideas helpful not only for me, but also for other people who are going through chronic illness or pain. This is you helping me to make my life-altering, overwhelming problems into something that is conversation-sized. Or we could call it bite-sized…or even fun-sized! Because not getting stuck in conversations is fun.

And I’m learning to answer questions better, too, as I adjust to my life as it is right now. I try to remind myself that my friends ask “How are you?” because they care about me, and I don’t have to pressure myself to tell them everything that comes to mind in order to graciously accept their love in a conversation. If someone asks me “How are you?” now and I don’t know how to answer, I pretend that they asked me one of the questions above and get myself unstuck that way. (If you just thought, “Wow Natalie, you are super insightful and introspective!”…thank you very much! But my ultra-intelligent husband is the person who keeps telling me to be more gracious, and I’ve finally got it through my rather thick skull. So all credit goes to him.)

And, on that note, this post is dedicated to my dear husband. I’m sorry for giving you the stink eye when you ask me how I’m doing. I can’t guarantee anything, but I will try to be less stinky eyed in the future!