Know Happy: Notes on Voluntary Confinement

The Visible app gives me a 2. Not the lowest score possible but It is a “Back to bed with you, Dear” kind of score. A score of knitted brows and wringing hands. Your body is out of balance today, the app tells me. You may want to plan a quieter day.

So I do. Even though the sun is up and the crepe myrtle blossoms are unfurling in the July heat, I down my morning meds and crawl back under the sheets. Eye mask, earplugs, more sleep. Fractured sleep disturbed by epic action-thriller fever dreams that shake my hold on reality, but sleep nonetheless. What else is there to do?

When I wake again hours later, that familiar sensation of being drugged being shackled to the bed frame greets me. The clock says I’ve logged nearly 11 hours since fighting my way under last night. That should be a win, right? Perhaps, if sleep was restorative.

It still amazes me how all-consuming this fatigue is, how impenetrable. But even if the rest doesn’t “work” in the short-term, it’s a certainty that not resting will make things worse. 

The app urged me to stay here, to commit to pacing. So while this is officially a rest day, other primal needs demand at least a smidge of attention. A bathroom trip, a drink of water to knock back the second round of morning meds. In an effort to minimize exertion, I mentally map out the steps of my action plan before hauling myself from gravity’s clammy grip and opening the blinds.

And suddenly, I am better.

Wholly, marvelously better.

I feel… right again. Fresh as a daisy and ready to stride right out into the day. 

How to describe this return to okay? The utter bliss of plain old garden-variety health? Can happiness truly be so simple? When the trail went cold miles ago, it’s hard to think beyond survival. Then, without warning or signposts, the trees part onto a shimmering lagoon of rightness. It is more than oasis. It is a homecoming. 

I wiggle my arthritic toes and brush limp hair from my eyes. No, this is not a dream. I’m still a middle-aged human. But the morning’s sweet gift of rightness buoys me and the Visible app’s score of 2 vanishes from all consideration. Every tabled plan comes flooding back in. 

There’s a farmer’s market this morning. It’s peach season, and local watermelons are showing up too. 

Better yet, I could log into work! If the staggering price tag on concentration is finally gone, I could get my job back on track. I’ve been out for nearly three months but they haven’t fired me (yet). Maybe it’s not too late to turn things around.  

But why think small? The city is just an Orange Line ride away! Sure, it’s 98 degrees outside, but wouldn’t it be worth it? I could drag my kid out of bed and have a lazy wander through the Smithsonian. The last time I set foot in the National Gallery was 2022. Is it still possible to chill out in the reflected light of a bottle-glass fish in the Alexander Calder room up in the East Wing tower? There must still be money on the Metro card, buried in its lanyard sleeve at the bottom of the kitchen drawer. 

But with this heat, maybe shade and trees? I can let my son sleep in and take the dog for a hike along Difficult Run. Or better yet, get on my bike! Ride to Difficult Run and THEN hike the trail!

I walk out of my bedroom and marvel at the dreamy sensation of moving through my house without lugging the albatross of illness along with me. Did someone perform an exorcism? Nowhere in sight is the rank, rapacious smog that up until this moment has torpedoed every attempt to return to normal.

I fill a glass, swallow my meds, and for a luxurious moment, stand in the kitchen.

I STAND. In the KITCHEN. Not even holding onto the counter!

I clap my hands, once, twice, three times! The dog startles and regards me from across the room. Grinning, I glide over to her bed and crouch down next to her.

“What’s up?” She asks.

“Oh, just coming over to say hello to my girl.” I stroke her head. She blinks and narrows her eyes.

“Don’t yank my chain, Williams. What nonsense have you got cooking?”

“It’s not too miserable out yet…” I pat her flank but she prickles at my touch. 

“Don’t be a twit,” she grumbles. “The app said 2.”

“It’s just an app. What does it know? I mean, really?”

“Right. Just an app.” She grunts and plops her head back onto the dog bed. Clearly this line of argument is not going to cut it. 

“Fine then,” I tell her. “You don’t have to come. But I’m going for a walk in the woods. By a creek.”

I stand.

And there it is. 

The crack spiderwebbing across my fantasy. The shattering.

It wrenches me from my dream lagoon and hurls me onto the splintered dock, hook still caught in my cheek. 

It’s gone. The normalcy, the okay-ness, the sense of possibility.

In its place, the illness that has taken root inside my flesh and made this body its home. Dizziness, wave after wave of shakes, fatigue, nausea. And the most recent bout of phantosmia that now bears the unfortunate name of Marlboro Mouth. 

That whole flash of rightness? It lasted maybe three minutes. If that. Three yummy, beautiful minutes. If history is a guide, that is likely all that will come my way for weeks or months to come. These moments of feeling okay have shriveled into smaller and smaller bits, disappearing into fragments, then wisps, and finally into memories that can barely be called that because they now only appear through a lens warped by illness.

I fold myself back down to the floor. Right there on the wood planks, far too shaky to even reach for a cushion. 

The app is called Visible. A guy who was hit with Long COVID created it a couple years ago and it’s become a popular tool among people with ME/CFS and Long COVID for tracking symptoms. I use the free version because I’m cheap so the app doesn’t capture all my vitals. But still. It measures daily pulse as well as Heart Rate Variability (HRV) which, when low, can indicate autonomic nervous system dysfunction. It gauges trends in sleep quality, how much I have exerted myself along four dimensions (physical, social, emotional, and cognitive), and my self-reported daily ratings of over a dozen symptoms, from headaches to muscle weakness to Marlboro Mouth. 

So the app’s score is really my score, isn’t it? 

My “just an app” gave me that low Morning Stability number. Its suggestion to chill today is not arbitrary. It is also, apparently, not wrong.

On the floor, I consider the dog. 

“You were right. As usual.”

“Wish I weren’t,” she says. “But better you realize it now than halfway across the National Mall.”

“Small favors, I guess.”

“Anyway,” she glances at me, not bothering to lift her head. “You’re the one with the song.” 

I stroke her belly. It’s a nice place to rest my hand. “You remember the song?”

“Do I remember the song?” she mutters. 

“I hate that song,” I say.

“You’re on the couch singing it to me for who knows how many days straight? And you hate the song?” 

“Clapping is overrated anyway.”

She snorts. “Says the one with hands.”

I scowl and give her a scritch between the ears. “You’re not helping.”

“Don’t hate the player,” she says. 

The song. The stupid song. The one offered up by one of the fellow afflicted. In jest, more or less, but also not. Sung to the tune of an earworm-inducing children’s rhyme:

If you’re happy and you know it, stay in bed.
If you’re happy and you know it, stay in bed.
If you’re happy and you know it,
don’t get up, you’ll surely blow it.
If you’re happy and you know it, stay in bed.

A call to pace. To keep pacing. The song a mnemonic for the poorly functioning (but ever so hopeful) ME/CFS brain reminding us of the unequivocal fact that we must ALWAYS BE PACING. 

Even when our worst symptoms start to abate, we have to keep things chill. It’s counterintuitive. More than that, it’s torture. We rest our way to a semblance of stability, we finally get a taste of freedom, and all we can do is stay put? How can that possibly be fair?

It’s not. None of this is fair. But that doesn’t make it any less true. The surest way to make ourselves sicker when we start feeling better is to believe that we are better – “I’m healed! It was all in my head after all!” – and to immediately start overdoing it. Triggering another cycle of exertion and PEM and crashing which further lowers our baseline and sends us creeping closer, ever closer, to severe and permanent disability.

The dog does not need a reminder. She feels good, she’s perfectly content in her bed. I need to follow her lead.

“I’m following your lead,” I say.

“We’ll see,” she says. 

I crawl back across the floor and climb onto the sofa for another round in a day (week? month? geologic era?) of resting. 

The illness is chronic. It’s with me today as it is all days. But even with evidence on my tracking app that I’m still sick, on this one morning two years into Long COVID, my illness took an unscheduled break. While it ducked out, I had a chance to taste the sweet possibility of recovery. 

More than taste it. Feel it. Know it. In my bones, all the way down deep.

I was happy.

The human, canine, and digital companions at my side, plus the worldwide community of fellow afflicted sharing their hard-won wisdom, give me hope that I will know it again.