In early 2018, I was diagnosed with an inflammatory autoimmune disease. That means, like all chronic illness sufferers, I only have 12 spoons to get me through the day! Luckily enough, I get by with a little help from my friends (and lots of prednisone).
The term spoon in this sense was coined by Christine Miserandino as a way of explaining what it’s like to live with a chronic disease. Imagine I hand you 12 spoons – that now represents all your energy for the day. Now, describe to me what you would do on a normal day, and I will take one spoon away for each activity. We have to spend our spoons wisely or we will run out (ending up in a lot of pain or be completely exhausted).
We can always borrow spoons from tomorrow, but that means that there will be even fewer spoons to get through the next day…
1. Spoon thieves.
Those fun friends who mean well but don’t realize that going for a hike, a brisk walk, and some cocktails will require a minimum of 14 thousand spoons.
When your body is too preoccupied with manning a war against itself, some things get left on the back burner… like your entire digestive system.
3. “Why aren’t you wearing your rings?”
Yes, I love that dainty silver ring you got me for my birthday but the small sausages that have become my fingers are currently on a sabbatical.
4. We gotta have “the talk.”
That moment when you break the news to your shiny new crush that you’re actually an 80-year-old granny trapped in the body of a 23-year-old.
5. Ripped jeans.
The holes in those trendy ‘distressed denim’ jeans (that all aunties hate) are fantastic for when your knees swell up like baby watermelons.
6. Friends that just get it.
Thankful for those special friends who celebrate your tiny victories and give you bath salts for when there are lots of tears.
7. Waiting rooms.
If I’m willing to spend three hours of my life sitting on a hard plastic chair while feeling really sick, I’m either in love with you or you’re a fancy specialist with a last minute cancellation.
8. Pills…so many pills.
Who needs breakfast when you have the luxury of having to swallow 25 tablets in the morning?
No, not like the bird. I’m talking about good ‘ol Candida Albicans. When you have to go back onto prednisone for a flare-up (and suddenly feel like a million bucks), there’s nothing quite like a case of oral thrush to humble you.
10. Eye bags.
Telling your crush that you come with baggage as you wake up in the morning. Nope, not the emotional kind, the ones under my eyes which are no longer hidden by concealer.
I love routine, look how healthy I am! > I should do something exciting, I’m bored > I’m over stimulated and sore > Why did I break my routine? > I love routine, look how healthy I am!
“But I saw on your Instagram story that you went for a run yesterday?” Yes, I had one good day and lost all of my spoons and today am spoon debt.
13. Meeting other spoonies.
There’s nothing quite like meeting another kindred spoonie spirit. When we spend the majority of the time putting on our brave faces and big girl panties, it’s nice to talk openly with someone who knows what you’re going through.
14. That steroid moon face.
Cortisone is great for many things, unfortunately, one of those things is water retention.
15. Healers, homeopaths, and acupuncturists.
If it makes me feel better, then consider me a believer. If that means carrying around a blue crystal and a wad of burning thyme then so be it.
16. Good days!
There are few things quite as motivating as a really good day (the trick is to resist the urge to try to achieve your life goals in this one day).
17. “You look tired!”
That, my friend, is because I am tired. All. The. Time.
18. Being proud of the most ridiculous things.
I don’t know about you, but being able to stand-up off the ground without someone’s help felt like as much of an achievement as getting my degree.
19. “Woah, you have so many things wrong with you!”
Chronic illness is like an orchestra – all your diagnosis working together to create a symphony of “I feel like crap.”
20. “What are you up to this year?”
Ah yes, the dreaded question (normally asked by an auntie in front of 12 strangers). Because “nothing, I’m taking time off to heal” isn’t an ideal answer, apparently.
21. “You’re still sick?!”
How many times have you had to explain the definition of “chronic” this month?
22. “Hello, I’d like to report a broken body thermostat.”
I am always cold. It doesn’t matter if it’s mid-summer and 100 degrees outside, I need my hot water bottle and thermal socks at all times (we don’t care if it makes you feel hot).
Like any good spoonie knows, we have to take each day as it comes. That means we are allowed to make jokes about symptoms that are scary and diseases that are serious because what’s life without a little lemonade?