Southeast Living, 2018
By Meg Hartley
Do you remember the last awful flu you had? How hard, or even impossible, it was to do your day-to-day activities? Folks with chronic illness deal with that level of inability and discomfort every day, sometimes all day long. The ways one can become incapacitated like this are many. From multiple sclerosis to fibromyalgia, myalgic encephalomyelitis (chronic fatigue) to arthritis – and the miserable world between, there’s a whole lot of people out there who are having a hard time with daily basic tasks.
10,000 Knives When All You Need is a Spoon
A lupus fighter named Christine Miserandino created a now-popular spoon metaphor to describe living with these limits. It all began when she was eating at a diner and a friend asked what it was like. To answer, Christine gathered all of the spoons from their table and a few more from others; then explained that when you have a chronic illness you only get so many “spoons” to get through each day. Every tiny thing uses up spoons: showering, getting dressed, having feelings, doing the dishes, everything. (Even thinking! This spoonie writer uses up most of her spoons just sitting at a computer many days.)
When you use up all of today’s spoons, you can borrow from the next – but since tomorrow is just as spoon-limited, doing so will leave you with even less spoons to get through the day. If you go spoon-negative you’re likely to cause a flare: an exponential increase in symptoms, which can last for weeks. And, to compound matters, changes in barometric pressure can make things like rain, wind, cold temperatures, snow, and even clouds cause flares; making the person that might have been able to meet you for dinner a few days ago, completely and utterly debilitated today.
It’s Not Easy to be an Alaskan Spoonie
Suffice to say, winter in Southeast Alaska brings an incredibly challenging time for most with chronic illness, or “spoonies.” Many are even homebound. Here’s a few ways to help your spoonie friends during this tricky time of year:
SNOW. Think of that miserable flu again. What do you think would have happened if you forced yourself to shovel snow in that condition? With a regular flu, you’d probably stay sick a bit longer. But for a desperate spoonie, doing so will likely cause a flare. When you’re already dealing with such intense symptoms, it’s hard to describe just how horrific a further increase is. If you’re able to help a spoonie shovel, or to just do it for them – you’re a true hero. Same for salting, taking care of stabby icicles, and all of the other fun our Southeast winters bring.
Let’s be honest, your spoonie hasn’t even been able to shower in days, let alone do laundry or dishes. (Vacuuming? Haha. You’re funny.) Standing things are hard. And cleaning tends to require standing. Plus, cleaning one’s house does nothing to pay its rent or mortgage, and when you’ve only got so many spoons per day – one must prioritize. Lending a hand means the world.
Who doesn’t love a hot cuppa soup or other nourishing treat when you don’t feel good? This doesn’t change when you’re sick all the friggin’ time. When faced with the task of cooking – standing for an extended period of time – many spoonies choose to eat conve-nient-but-unhealthy meals, or forego the meal completely. (Want to help, but don’t want to face the elements even in your healthy bod? Think about sending over a delivery meal, or even groceries with Instacart.) Be sure to ask about allergens as they’re common in spoonies!
Being chronically ill is incredibly isolating. The world keeps spinning after you’re forced into a sickbed, and it can feel like it’s forgotten all about you. So if you think of your spoonie, tell them. Arrange a visit if they’re up for it. And if that’s not doable, try to call over messaging. Typing out how one feels isn’t particularly soothing. (It’s likely they won’t have energy to talk for long anyways. C’mon, go retro.)
The ways your spoonie needs help are many, but they aren’t likely to share that information with you. When presented with the rare gift of human interaction, many of us would rather talk about anything but our stupid needs and diseases. (Though sometimes it’s all one can talk about, so please use patience and empathy in those cases…) Asking how you can help in an open-ended way, rather than offering something specific and withdrawing when it’s not needed – can be a real life-saver.
Alaska winters are hard on us all, but it dealing with crippling disease on top of it is straight-up dangerous. Just being there for your spoonies, especially this time of year, really means the world. Even if all you can offer is a text or a hug – please, get that texty hug on.