As I develop content for my book, publishing in September 2016, you’re going to keep hearing me refer to this thing called a “spoonie.” Nope, not a trekkie. Not some weird reference to cuddling. It’s a way people with chronic disease describe ourselves, and here’s why.
Christine Miserandino, author over at But You Don’t Look Sick?, stumbled upon this analogy when trying to explain to her friend what it felt like to live with lupus. If you live with chronic disease, or you know someone who does, you should head on over to read her full explanation.
In short, she explained that most people wake up in the morning knowing that they’re going to be able to get done whatever it is they want to do. Even if they’re tired, they’ll power through, rest better that night, and tackle the next day with gusto.
For anyone living with chronic disease, our energy stores are a very limited tank that need to be watched with the utmost care. It just so happened that, as she was explaining this, she was in a diner with access to quite a bit of cutlery. So Christine grabbed some spoons and set off on this way to explain things:
Let’s say that you start every day with an unlimited amount of spoons. Those spoons are your tickets for being able to do whatever you want throughout the day. Going to work might take 5 spoons, a challenging meeting might take 3, playing basketball with your friends might take 4, but either way, it doesn’t matter because you have unlimited spoons.
But your friend, the one who has a chronic disease, starts their day with 12 spoons. Let’s say that taking a shower and getting ready in the morning takes a spoon. The commute to work takes 3, because people are being rude today. There’s an all-staff meeting in the morning that was more drama than it should have been – that took 4. A packed lunch was forgotten, so venturing out for food (and figuring out what CAN be eaten given a very picky immune system) takes another 3. All of a sudden it’s 1pm and how many spoons are left to get through the rest of the day? One. One measly spoon. You’re about to crash, you’re out of energy, and you didn’t plan to use so many of your spoons so quickly.
And that’s what it’s like living with chronic disease. It’s a constant battle of how much energy any given activity is going to take, and FIERCELY guarding those energy stores, prioritizing what you really wanted to get done, knowing that anything else just isn’t going to be possible.
And some days you wake up with less spoons. Some days are bad and you only get 3. It’s not enough spoons to get to work if you want to take a shower first, and certainly not enough spoons to get through the day. But you have to work, so what do you do?
This has always been a very real thing for me with my type 1 diabetes, but particularly in the last few years as my immune system has continued to get more sensitive and on some days, completely tank. For those of us “spoonies” who purposely keep a lot on our plate because we like to set high goals for ourselves and get a lot done, it can be particularly challenging. It’s a very real struggle between wanting to get things done and truly – physically – not being able to.
So tell me, are you a spoonie? What are you dealing with? And what goals are you going for with your limited supply of spoons?