A really important concept in the Lyme-MSIDS and chronic illness community is Spoon Theory. I talk about my “spoons” a lot, then realize I’ve made a mistake when people look at me weird, and I have to explain Spoon Theory; ironically, I don’t have enough spoons to do it. So here’s the scoop (pun intended):
The “theory” was developed by Christine Miserandino, and the full story can be found here. To summarize, spoons are a unit of energy, like bars on a rechargeable battery or funds in your bank account (those analogies would make a lot more sense, but alas, the Spoon Theory is already cemented in history and Spoonie vernacular). Every single thing you do in a day costs you "spoons", from getting out of bed in the morning, to eating breakfast, driving your car, working, making a phone call, to taking medication. Everything drains your battery, a little or a lot. Everything "costs" you.
If you do not respect the number of spoons in your drawer (if you don't pay attention to your phone's charge, or budget your bank account), you can and will run out very quickly. And once they're gone, you have no choice but to WAIT - rest, stay in bed, do nothing - until they recharge again, sometimes overnight, sometimes a whole week or month if you've REALLY overdrawn your bank account by taking on too much.
(Notice how shopping for food, cooking the food, and eating the food each take their quantity of spoons, as do driving to work and actually working.)
Healthy people take this for granted, because they generally start the day with 40-50 spoons, and can drink coffee or have a power nap to get more if needed; for the most part, the body washes, dries, and restocks the drawer full of spoons every night. Their phone battery is at 100%; they have a good bank account and consistent paycheck. For a healthy person to run out of spoons, it takes one of those big work deadlines while getting the kids to extracurriculars while the dog is sick and your mother-in-law announces she's coming to town. No time to cook or do the dishes. Then they get a bubble bath and a glass of wine, and a good night’s sleep, and their body will recharge, because that's how it's supposed to work.
For people with chronic illness (self-avowed “Spoonies”), there is a severe shortage of spoons; we start the day with about 12 (this number varies widely based on condition and daily flare-ups) and must rest for several hours to generate a few more. We have those old phone batteries that only charge to 27% and drain too quickly; we live paycheck to paycheck in the energy bank. The infections and dysfunction in our bodies destroy our metabolism, hormones, and thus energy levels. Like a tight budget, we must learn to evaluate what must be done on a given day, and spend energy only on those activities. If we use spoons on anything else, we risk not having enough energy to keep appointments, or even eat. Sometimes we can borrow spoons against tomorrow, but it usually means tomorrow we will have to stay on the couch.
My own spoon budget looks something like this: I absolutely must get out of bed and use the toilet, take my medication and eat 3 meals a day. Because of my food sensitivities, I have to do the cooking (from scratch) of those 3 meals, which leaves 3 spoons worth of dishes in the sink. That’s a baseline of about 12 spoons. I’m already stretching the typical Lymie budget. I must rest after each meal in order to load more spoons for the next one. On days when I do laundry, I often don’t change out of my pajamas or even wash my face in the morning, because I don't have enough spoons to do laundry AND get dressed - I have to choose one. Every spoon counts. If I have 4 spoons left, I can either wash my hair, go to a doctor’s appointment, or go to the grocery store. Only on a rare good day can I do two or more of those.
So I need to spread errands out over the week. Today I must wash my hair because tomorrow I have an appointment. The next day I must go to the store because I’m out of food. So I cannot make any plans for the next 3 days, because I anticipate needing all my available spoons. On any given day, I can wake up with more pain or fatigue than usual, meaning less spoons, and not be able to “afford” my planned activities. That’s when I have to wait for my husband to drive me to the store, my hair goes unwashed for a week, and I start canceling the plans I made back when I had an excess of spoons. And we haven't even spent anything on a social life!
Even a conversation takes spoons! Most people don’t realize that “getting together for a cup of coffee” (which I can’t drink anyway) is not relaxing unwind time for me. While I certainly prefer to spend my spoons that way, the sad fact is, sometimes I have to choose between talking to you or talking to my husband. I might have spoons to drive to your house and back, but then none left to actually converse! (That's when I space out and forget what I'm saying.) What’s worse, most of my conversations involve explaining my illness, which is a little more scientific and emotional than “how’s your day?” so explaining takes more spoons, and then I'm all triggered and nervous about it, so I drain even more spoons.
Unlike a healthy person, I cannot cheat the spoon payout system with more coffee or energy drinks (gives me jitters, palpitations, and the stress on my body makes me more tired), and restorative sleep is incredibly hard to get with Lyme-MSIDS; insomnia is one of the most common and severe symptoms. When I tell you “I’m tired,” it does not mean the same thing as your being tired. It’s a debilitating fatigue that comes with cognitive impairment, making some things, like just making a phone call, exhausting. Spoonies are on energetic food stamps while the rest of the world has a company credit card. We are not at the same table. Everyone needs to respect that.
For Lymies, this can be a very useful tool that can help manage your time more wisely. I knew about Spoon Theory, but for the longest time it didn’t click. I couldn’t figure out why I would wake up feeling fine, sing my way through the shower, get ready to head out, then all of a sudden I felt sick and exhausted. I blamed myself – I thought I was subconsciously making excuses not to leave the house! Finally I realized that showering, especially washing my hair, took all my morning spoons. Simple (if stinky) solution: I don’t shower if I have to go somewhere, or do it the night before. The exhaustion makes a good bedtime routine. Now I can leave the house when I need to, and not feel guilty about my fatigue.
You need to have compassion on yourself when you run out of spoons unexpectedly and crash in the middle of the day. You can empower yourself by knowing that if you really really want to spend spoons on an outing with friends, or if you must spend spoons on a deadline, house move, or meeting, you can save them up ahead of time - clear your schedule for a week or two before the event, and you'll have a fully stocked drawer to make it through safely. If you don't, you can have some very tragic disasters in the middle of your vacation.
Understanding Spoon Theory is really important for others to understand the Lymie way of life. If you are sensitive to it, hopefully you will make fewer demeaning comments like, “Have you tried yoga?" and be less pushy and ambitious with group plans. Lower your expectations and the responsibilities you place on a Spoonie - you never know how many spoons are left in their drawer. Also, if everyone was aware of this, we wouldn’t have to use our precious spoons explaining our precious spoons.
May is Lyme Disease Awareness month, so I purposely allotted some spoons for research, writing, and sharing important information. I’m also moving next week, which means borrowing spoons against the entire month. Be kind to me :-)
Tomorrow: The Wasted Days of No Spoons