On this typical ME/CFS day, so much like all the other days, I’m pleased to be out of bed at ten. That gives me a couple hours to rev up before the clock flips over into p.m. Something about waking after the stroke of noon feels like a defeat.
I put the kettle on and sit in the sunroom while it comes to a boil. I add a teabag to the pot and sit in the sunroom while it steeps. Then I pour myself a cup and sit in the sunroom for a very long while. I’ve gone from bed to sitting. This is progress.
I watch birds at the feeder. I read the morning news on my phone. I write up a list of tasks to do today. But mostly I’m tuning in to my body, waiting for a quiet signal that I have enough energy to start my day, hours after the rest of the world has started theirs.
Today the signal comes when I have been sitting for just an hour. I am so happy! This is good!
I dress, put in my contacts, and have a bit of breakfast. I feel remarkably clear-headed.
Up in my office, I open my laptop. I schedule an appointment with a new primary care physician (this has been on my to-do list for months). I message a question to the doctor who manages my chronic fatigue. I pay a bill online. I check my calendar for upcoming appointments. I’m worried because, two weeks from now, I have a medical appointment and a haircut on successive days. No time to recover in between. But the thought of not being able to go to two appointments in two days is still ridiculous to me. I close my calendar.
By now, fatigue is starting to make itself known. Just a little bit. It’s tapping me on the shoulder, not aggressive, but certainly insistent. I understand that I should lie down for a few minutes, take a “planned rest,” as one CFS expert calls it.
After ten minutes of lying flat on my bed, I’m impatient. I do have the energy to work, and I’m going to. Planned rests be damned.
Back to the laptop. I open a spreadsheet I’ve been building to track our charitable contributions. I make a phone call to one of the charities. Send an email to another. Peruse the spreadsheet and make some adjustments in formatting. But the fatigue of sitting at my desk really is catching up to me. However, I so much do not want to lie down. I’m sick of lying down. Maybe I can get up and move instead.
I tidy up my office. I make my bed and pick up clothes off the floor in the bedroom. I walk downstairs to get a glass of water in the kitchen.
But now fatigue is shaking me by the elbow. It’s poking me in the ribs, kicking the backs of my knees. I am so annoyed, so discouraged. But when I lie down on my bed and pull an afghan over me, I can’t deny the sheer physical relief.
I bring up Spotify on my phone. Click on the Wailing Jenny’s radio. I’ll take that twenty minutes planned rest and then I’ll drive to the neighborhood grocery. I know I can’t do a big shopping today, but I can pick up a few things to keep me going.
I wake two hours late. It’s gone four. Fatigue has simply moved in on top of me, pinning me to the bed. The trip for groceries fades away. Finishing the spreadsheet fades away. The possibility of cooking a good dinner fades away. Whatever “energy dollars” I started the day with are gone. I’ll lie in bed for an hour waiting to feel enough strength to get up. I’ll slap together a pb and j sandwich, talk for a bit with my husband, and go back to bed. This scenario has happened so many times that I don’t even really feel the disappointment. It’s muted, like the gray March skies outside.
But I loved my morning! I loved those hours in my office—doing, making, moving pieces of my life forward with skill and intelligence.
This has been a good day.