There I was at the computer, staring at my monitor, seeing a vast expanse of white space that needed to be filled with this post. This post about spoons. I stared at it on and off for six hours and nothing came to me – well, nothing other than the overwhelming urge for a nap. Eventually, though, it occurred to me that trying to write about spoons when I was completely out of them was perhaps flirting with idiotic, so I turned off the computer and had a nap.
When you have a chronic illness like rheumatoid arthritis, spoons are not just flatware; they can represent energy. That’s the basis of the “spoon theory.” Invented by Christine Miserandino when asked by a good friend what it was like to live with lupus, the spoon theory assigns you a set number of spoons for the day – say 12 – and takes away spoon after spoon as each unit of energy is used up. For instance, your morning routine takes one spoon and when you have a bad pain day, merely getting out of bed can remove a spoon from your set. Going to work takes a bunch of spoons, as does grocery shopping, going out to dinner with friends and as you go through the day, your spoons are used up. Ideally, the goal is to end the day with at least one spoon in reserve, but if it’s necessary, you can “borrow” spoons from tomorrow – just remember that if you do, you’ll have fewer spoons the next day and will have to reduce your activity.
Whether you imagine your energy as spoons, a handful of batteries, a field of lit and extinguished light bulbs or, my personal favorite, as a bank account, translating your ability into a tangible and quantifiable symbol can be a valuable tool to help you manage your energy and making sure you don’t overdo. It can also be a great help in dealing with your own feelings of guilt, as well as the judgments of others.
Do you feel lazy when you take the elevator instead of the stairs? Do your family and friends complain when you have to cancel again because you’re not feeling well? Does your spouse get annoyed when you spend the evening lying on the couch while the dishes pile up? And when you do, do you spend the time you’re supposedly resting feeling guilty because you’re not doing something productive? We live in a world that values being busy and abhors laziness. If your chronic illness is mostly invisible, conserving your energy can look an awful lot like laziness. One of the biggest hurdles to living smart with RA is having a hard time believing that taking care of yourself is a necessity, not an indulgence.
Rheumatoid arthritis saps your strength, makes you use more energy doing simple tasks than other “normal” people, it means you move more slowly and using the stairs can cost you a spoon. If you take the elevator instead, you keep your spoon, which means you’ll be able to focus on work after your lunch instead of being as limp as a wet dishrag because your ankles and knees are throbbing. Taking the stairs, not rescheduling plans when you’re low on spoons, beating yourself up about not being able to work because your body is screaming to lie down set you up for failure. The more you borrow from tomorrow and the next day, the more your energy bank account goes into overdraft, the more likely it is that you will get sick, have a flare or will be in so much pain that you’ll have to take several days off while you fill up the bank account or slowly regain spoons.
You may understand that you need to ration your energy, but what about the people who look at you askance when you take a seat on the bus, judge you for not running up the stairs, don’t understand when you have to cancel plans? Here, too, spoons are a marvelous tool. Sit down with your friend or family member, have a cup of tea or a glass of wine, give them a handful of spoons and as you take them through a day of living with RA, you take spoon after spoon away from them. The understanding is instant and it sticks (and if it isn’t, consider spending less time with that person). Explaining how pain and fatigue sucks the zip out of your day and limits your options can be nearly impossible just using words, but with something as simple as a spoon, you can bridge the gap and help others understand.
Take care of yourself. Don’t spend all your spoons in one place.
You can read more of Lene’s writing on The Seated View.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.