It’s tough to stir without spoons

This week I talk about fatigue and the difficulty of budgeting energy, with the help of a dozen spoons.

Today the kitchen is as far away as Spain. The stairs have grown longer, stretching themselves like an accordion. The pot I lift out of the drawer to make porridge has gained weight in the night, trembles my arm. There are so many items of clothing to wrestle out of to get to the shower; so many to climb back into afterwards.

When I was a newspaper reporter in New Jersey, I wrote an article about a new, virtual reality machine that helped doctors to understand what it felt like to go through chemotherapy. I was allowed to try it out, although I had no way of knowing back then if it resembled the experience of chemotherapy or not. I remember that it made me feel like it took forever to cross the floor of a kitchen. I moved impossibly slowly, and simple tasks felt overwhelmingly complex.

It wasn’t exactly like my experience of chemotherapy (no nausea or nerve pain), but it sure got the experience of chemo-induced fatigue right.

I’ve been a shadow of myself for the past several weeks. Tim always gets up with Theo on school days now, so I can sleep in, but I never wake feeling rested. A couple cups of green tea make no difference. I manage to write every morning because what else would I do? I’m too conditioned to go anywhere but my desk when I wake up. It is both my passion and my life raft.

Usually after a few hours of work, my body is desperate to move. It wants to move through a ballet class or head out on a long walk. Not anymore. Now I have to drag myself upstairs to get through a simple Pilates class because I don’t want my muscles to waste. Everything I read says exercise helps fatigue, and keeping muscles strong prevents future fatigue. Yet when I go out for a short walk I come home too exhausted to untie my shoes. When I curl up in my office chair to read, I can’t keep my eyes open.

Everything feels overwhelming: making a salad, brushing my teeth, answering an email or phone call, entertaining anyone. I’m boring myself senseless. I want to be me again, the me capable of bright conversation, humor, liveliness. Right now I do not feel like I am living. I am alive, but only going through the motions of life. I’ve never felt so lonely, nor so incapable of being good company.

This became the topic of my recent conversation with my cancer therapist Troy. In previous sessions we had discussed my life goals and values, but this week I was too tired to think about achieving anything. He said the time had come to talk about spoon theory. You might already know about it.

It’s a very simple concept. Let’s say you start your day with twelve spoons, with spoons representing energy. Everything you do in the day uses spoons, so by looking at your activity, you can see where you are spending your spoons and where you might save energy. Getting out of bed uses one spoon of energy. Showering or reading uses two spoons. Making a meal or plans to socialize uses three spoons. And work, exercise, and going to the doctor each uses four spoons.

The spoon chart was created to help us explain to well people the limits of our energy. If, for example, well people start the day with thirty spoons, an ill person might start the day with the abovementioned twelve. So if I take my medications, shower, make myself a meal, put in a load of laundry, and go to the doctor, my drawer is empty.

I’m supposed to be examining where I spend my spoons, and how I might reduce activities that use them up. Looking at the chart above, there are some obvious things I can skip. I have never blow-dried or styled my hair in my adult life (this is probably obvious to anyone who has met me or seen a photo on Instagram). So I save a spoon or two there. Tim does 90 percent of the shopping for food and all the dishes, so I don’t need to do those. Work and exercise are most important to me, but those two alone use up eight spoons, and I use up five more getting up, taking my medications, showering and dressing. That leaves me already one spoon over my limit. That leaves no energy for making myself meals, planning things, answering emails and calls, cleaning the house, socializing, or driving anywhere.

I’m trying not to be extravagant in my spoon-spending, trying not to leave myself on the floor. On days we have spent looking at schools for Theadora, I don’t work or exercise, because walking around a school for four hours uses all of my spoons. On days I go to the hospital, I usually don’t even have time for exercise or work, because I have to go so early. I’m trying to budget.

But most mornings these days I wake up and look in the silverware drawer and THERE ARE NO SPOONS. I wonder if someone has stolen them or borrowed them for a dinner party. I wonder how to get them back. But I can’t go out and look for them because I HAVE NO SPOONS.

On these days, I just have to sit and wait for my spoons to come home. These are the hardest days. I have never been a patient person. But my oncologist assures me my spoons will return to me in time, when my bloods improve. When the cumulative damage chemo has done to my body releases its grip. In the meantime, I may need to borrow some spoons.