It’s absolutely pouring outside. The wind is blowing the rain up against the windows as if it’s trying to get in the house, while water streams off the outside shed roofs. The bog out back is quickly filling up, and our yard has become a puddled, muddy quagmire. The sky is heavy and dark, and the forecast looks the same for the next week: 35-40 mm of rain per day.
I’ve spent about half of the past two weeks in bed, sleeping—or trying to—while juggling a change in medication (feels as though I have the flu all the time), the associated depression, and unexpected (and completely draining) anxiety attacks.
I feel like I slept through the fall to winter transition. We had a few early, beautiful snow days, and I was glad we made it to Spectacle Lake to make the most of the snow. Then the late fall sunshine returned—of course for many of the days I was stuck in bed.
Now winter is truly here.
I wasn’t able to get out for my regular cycling or hiking when the weather was good, and with the weather now so miserable I don’t feel overly enthusiastic about heading outside.
I’m also finding it hard to balance work, family, and self-care. I’ve been so limited in what I can do and gotten so behind in what I need to do, that it’s been hard to prioritize what to do on relatively good days, without overdoing it and falling back into a bad day.
It’s all an unwelcome reminder that, no matter how well I structure my days and manage my activities, there will always be that unpredictable element that will throw a spanner in the works and leave me back at square one (or even negative one), wondering how to get back on my feet again.
For those of you wondering what the problem is, I think it’s time I shared what it means to be a “spoonie.”
Spoonies are people who struggle with chronic illness. The term is based on a blog post by Christine Miserandino.
The basic idea is that people without a chronic illness have an unlimited number of spoons (aka energy) to get through their day. People with a chronic illness, however, have a limited number of spoons/energy—and that energy is used up more quickly and on more trivial tasks than for people without chronic illness.
For example, every morning I get up, write my “morning pages” (from Julia Cameron’s The Artist’s Way), have breakfast, and take the dogs out. Then I have to assess where I’m at with the spoon situation. On some days, just those few activities take up five spoons. On better days, those same activities only take up one or two spoons.
Either way, I have to decide how to structure the rest of my day. And I can’t do it too far in advance because I never know how I’ll feel on any given day.
If I run errands, that will use up three to four more spoons. But if I have a blog post due soon, or need to do some editing, I can’t afford to give up those spoons because I need them for my writing and editing. So I have to decide what’s the best way to “spend” those spoons.
I also have to factor in time with my husband. Because I’m only up for a set period of time each day, it can be hard to do things together. Going on errands may use up three spoons—but it may also be my best chance of spending some time with my husband. So I may give up working on writing or editing that day, in the interests of having some together time.
But what about everyday activities like making meals? Making dinner, in particular, takes a lot of spoons. Lately my husband has been doing it because I just can’t fit it in. But when I do, I make something early in the day to avoid my everyday downtime, which is from 3 pm to dinnertime. And I use up spoons to make it. So I might say: no, I can’t run errands because I have to use my spoons to make dinner instead. Oh and, since I used up my spoons on making dinner, I also can’t do my writing and/or editing.
Fun stuff also takes up spoons, including cycling, walking, photography, sewing, and knitting.
For example, I notice that doing a 20 km cycle ride uses up significantly more spoons than a 15 km ride. Thus, if I still want to do other things on the same day, I need to stick with the shorter distance. In the same way, doing a 5 km walk uses up fewer spoons than a 5 km run–walk.
With fabric arts, sometimes my spoons are used up just in designing a new project. Other times I have lots of spoons and can design and get halfway through that project. But again—I have to balance that spoon usage against daily living activities (meals, dogs, etc.), errands, blogging/editing work, etc.
And that’s just everyday life.
Consider going to a workshop or a conference. For example, I’ve attended the Creative Nonfiction Collective Society meeting in each of the last three years, and really enjoyed it.
But each event requires that I strategize: (a) whether or not I can realistically attend given how I feel in the run-up to the event, and (b) every step of my participation (travel, accommodation, program).
How will I get there without using up too many spoons (or too much money)? How many nights will I stay? Do I go the night before so I’m not adding travel to a day of workshops? Do I stay the night of the last day so I’m not travelling after a full day of workshops? Can I find a place to stay that’s close to the venue so I can pop back to my room when I need a nap, and so I don’t have far to go in the morning? Can I get meals easily from where I’m staying to avoid using spoons up to find meals elsewhere? How many sessions can I realistically attend before I have to go to bed? What do I do if I have an anxiety attack (this usually happens at night, which means I don’t sleep enough while I’m away)?
Another big question is: do I have enough time after I get back to “recover” (this usually means a lot of extra sleep), without having to finish something on a deadline? This is why I likely won’t attend the 2018 meeting in Toronto, as I can’t stretch my spoon supply enough to manage the extra travel.
It feels like I’m always thinking and weighing and calculating what I can and can’t do.
Which is why I think Miserandino hit the nail on the head when she wrote:
“[It’s] hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. [I] hate feeling left out, having to choose to stay home, or to not get things done that I want to. [Spoon theory helps loved ones] feel that frustration. [It also helps loved ones] understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count ‘spoons.’” (emphasis mine)
This is overwhelmingly true. And I’ve been forcibly reminded of that these past few weeks.
When I feel really down, I think of Elizabeth Tova Bailey, who was confined to bed for months at a time due to a terrible illness. She managed to write a jewel of a book, The Sound of a Wild Snail Eating, which was all about her daily companionship with a forest snail she received from a friend and housed in a terrarium beside her bed. She watched the snail, and talked to it, and learned about snails in general. And her quiet, still, bed-bound life took on a new dimension just from the presence of this small creature.
After all, as Annie Dillard said and I’m always repeating,
“How we spend our days is, of course, how we spend our lives.”
But she said more than that, talking about the life of the spirit, and the trade offs between presence and productivity.
“There is no shortage of good days. It is good lives that are hard to come by. A life of good days lived in the senses is not enough. The life of sensation is the life of greed; it requires more and more. The life of the spirit requires less and less; time is ample and its passage sweet. Who would call a day spent reading a good day? But a life spent reading — that is a good life. A day that closely resembles every other day of the past ten or twenty years does not suggest itself as a good one. But who would not call Pasteur’s life a good one, or Thomas Mann’s?”
So if you don’t hear from me, I’m counting my spoons. Trying to figure out what combination makes a life worth living, and what combination of days is how I want to spend my life.