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I’ve Been Dealing With Long COVID For 400+ Days. Here’s How It’s Affected My Marriage.

My husband, Andrew, once told me that he had more fun with me than with anyone else. 

He wasn’t my husband yet, but we had been a couple for five years at that point — 2½ in a long-distance relationship and then almost a year living together abroad — so his claim of still enjoying my company (indeed, of preferring my company to anyone else’s) felt significant. I sensed his remark wasn’t just a throwaway compliment; he was looking at me with unusual intensity. My intuition wasn’t wrong, and a few months later he asked me to marry him.

We’ve been together 18 years now and have faced challenges and crises common to many long-term relationships. Hospital emergencies. Job-search stress. Pregnancy, miscarriage, the loss of loved ones. After over a decade of marriage and the arrival of two children, we no longer harbor the illusion that our shared life should be all fun, all the time, but we’ve managed to keep joy and humor as good-sized parts of the equation — at least until recently.

I don’t feel very fun these days. I feel the furthest thing from it, in fact; I feel like a burden. It’s been over a year since I tested positive for COVID-19 (432 days, but who’s counting), and I still have near-daily headaches, joint pain, a racing heartbeat and fatigue. Fatigue, such a maddeningly vague term for this condition — and who isn’t tired after the past 18 months of pandemic life?

The exhaustion, when it hits, is like nothing I’ve known before, overpowering me with the strength and suddenness of a magic spell, forcing me to drop off instantly for hours. Not long ago I prized physical fitness, dancing and doing daily workouts, but the most activity I can handle now is walking, and often I can’t muster the energy even for that. 

I’m what’s known as a long-hauler — you’ve surely heard of us by now: Most of us had relatively mild COVID-19 cases, but we find ourselves still dealing with an impressive array of health issues months after our initial infections. There are potentially millions of us, but knowing this doesn’t make the adjustment to living with chronic illness any easier. Our wide-ranging symptoms, and their causes, continue to baffle doctors and scientists.

I’m fortunate in many ways; this horrible virus has taken so many lives. I have a home and a family and the ability to rest when I must, without risk of losing everything, which is more than much of the world can say. 

A few months ago, working on a reported piece about how the still largely mysterious effects of long COVID are affecting families and relationships, I was stunned and saddened at the stories I heard from other long-haulers. Like me, they had been active adults with busy lives; they had goals, families, fulfilling careers. The vast majority were previously healthy, never hospitalized or put on ventilators. 

“I lost my vision for a while,” one woman told me. ”That and the brain fog made driving impossible,” she added.

“I’m totally dependent on my partner,” another said. It’s made our relationship unequal.”

I heard from someone who had such extreme light-sensitivity she couldn’t leave her darkened bedroom for months, someone else who’d plunged into depression as her health problems — shortness of breath, post-exertional malaise, and nausea — persisted with no end in sight.

Awareness of the effect that long-term illness or serious injury can have on your life is depressing, something most people don’t like to think about until it happens to them. This includes the spouses and partners of those who fall ill, who are often forced into being caregivers far earlier than anticipated and who feel unprepared and overwhelmed. 

I’m often incapable of doing the things I want or need to do. I’m forced to decline, to step back, and my husband is the one who has to pick up the slack. When concerned friends check in to ask how I’m feeling, I’m grateful for their kindness but also wish he could more often be on the receiving end of such empathy.

One of the strangest things about chronic illness, I’m starting to realize, is its frequent invisibility. Often I look — and feel — healthy. I don’t want to be pitied or treated differently than normal — being bedridden is isolating enough — but at the same time, much to my dismay, I’m often incapable of doing the things I want or need to do. I’m forced to decline, to step back, and my husband is the one who has to pick up the slack. When concerned friends check in to ask how I’m feeling, I’m grateful for their kindness but also wish he could more often be on the receiving end of such empathy.

It’s disorienting for us both: In a time when many mothers are in crisis, losing ground professionally and losing their minds to the constant strain, I’m literally asleep on the job; meanwhile, he is the one working full time as our family’s breadwinner while also shuttling the kids to activities and appointments, cooking meals and handling all the other mundane tasks that keep a household functioning. He’s got no choice but to be Super Dad. Meanwhile, I feel sometimes like a ghost in the house — shut away in a shadowy room, listening as life goes on without me. In bed with a pillow over my ears, ice pack pressed to my forehead, I can still hear the kids’ shrieks of laughter or anger, their feet clomping up and down the stairs, their cries of “Ready or not, here I come!” The dog barks to be let out, my husband calls them all to dinner, and I keep on lying here in the dark. 

Before COVID, I tried as best I could to be dependable, involved in my community, but at this point, missing things (whether the kids’ soccer games, grownup social gatherings or work deadlines) has become fairly common for me. I don’t feel as capable as I was mere months ago, and I struggle with that, along with guilt about letting people down. But when I get weepy, lamenting my limited capacity to participate in things, worrying that this is how my kids will remember me — as a convalescent, a voice drifting from the shadows — my husband gently encourages me to buck up. ”This is not forever,” he says. He’s confident that my health, and our much-altered lives, will continue to improve, and I want to believe him.

One of the worst effects of this strange illness has been the way it separates my husband and me not only from our peers but also from each other. While I’m resting, he must keep chaos at bay, taking full responsibility for the kids and the house; when I’m awake, eager to be brought up to speed, I expect updates and explanations he’s often too exhausted to give. We bicker, of course. I make wildly unreasonable demands, given how little I’m contributing to the household— shouting directives from my bedroom lair, trying perhaps to maintain some illusion of parental authority despite my frequent absence from domestic life. 

Though my husband rarely complains outright, I can sometimes feel the frustration and resentment emanating off him like steam from a boiling pot — when I retire to the bedroom after eating a dinner he’s cooked, for example, leaving the kitchen mess and the slog of our kids’ bedtime routine entirely in his hands — and this perceived resentment in turn provokes anger and indignation from me. I don’t want to be an invalid, for God’s sake! I’m powerless in this! The truth is, we’re powerless together — powerless, exhausted and annoyed. Along with my frequent claims of having a headache, true though they are, this is not exactly a recipe for improved intimacy. 

Resentment is toxic to relationships. We know this. So we do what we can to diffuse tension and reconnect in new ways. We know, too, that we are hardly alone in this boat, that pandemic stress and isolation have taken a toll on many couples. The kids are back in school now, offering more chances for actual uninterrupted conversations, even occasional lunch dates with my husband. When possible, we get a sitter on weekend mornings and go on gentle hikes, harking back to happy times together outdoors.

The kids still worry — sneaking into the room when I’m resting, burrowing close to me under the blankets. “When will the COVID tiredness go away?” my youngest asks over and over. She’s only 5 but a fierce observer, never missing a chance to point out when I lose my train of thought or mix up ideas — brain fog, another of my symptoms (frustrating for anyone; particularly irksome for a writer whose livelihood depends on finding the right words). Sometimes we laugh about it — like when I noticed we were out of Cheerios and said I needed to “go to the zoo” to buy more. Like many children living through this time of plague, the kids ask often about death, and my husband and I do our best to reassure them. We tell them I’m improving, that all this rest must be helping. That life will start to feel more normal soon. 

The need to appear stoic — cheerful, even — in the face of danger and uncertainty has always been a particularly challenging part of parenting for me; every emotion shows on my face (I learned long ago that I’m terrible at poker). And it feels like there’s an abundance of danger and uncertainty lately, with the delta variant ravaging the country and more kids getting sick. On a ”60 Minutes” segment about long-haulers I’ve watched repeatedly, Anderson Cooper intones that “doctors have never seen anything like this,” and experts around the world are scrambling to find answers. 

‘When will the COVID tiredness go away?’ my youngest asks over and over. She’s only 5 but a fierce observer … . Like many children living through this time of plague, the kids ask often about death, and my husband and I do our best to reassure them.

Over the past year, as my family has cycled through periods of frustration, worry and grief, I’ve been doggedly pursuing possible remedies: taking vitamins and supplements galore, scouring message boards and online support groups, reading up on scientific studies and treatments for conditions with similar symptoms, such as chronic fatigue. I’m encouraged by the director of the COVID Recovery Clinic at the University of North Carolina, where I live, to remember the four “p’s” for conserving energy (prioritizing, planning, positioning, pacing), to try to find a balance between doing too much and not enough. I’m told there’s no reason to think that long-haulers won’t experience full recovery.

In my bleaker moments, though, bewildered by my body’s continued failings, I wonder if instead I’ll just keep declining. If damage to my heart or lungs will eventually make itself apparent. If my life might end sooner than I thought it would. No one has the answers to such questions, of course. 

I’m learning to live with the uncertainty, striving for that elusive sense of balance. Despite (or perhaps because of) the struggles this illness has caused, Andrew and I had a joint epiphany recently: This is it. We likely aren’t headed for insane wealth or fame, some grand life-altering adventure still gleaming on the horizon (though to be fair, if the past year has taught us anything, it’s to expect the unexpected). Maybe this readjustment of priorities is a normal milestone of middle-age, but it struck us as profound nonetheless, and also liberating. 

As most parents learn, seemingly unbearable moments in life are almost always bearable: the agony of childbirth, hours in a car with an inconsolable infant, saying goodbye to the beloved family dog when his time comes. All are blinks, really, in the span of a life, however eternal they might feel when we’re experiencing them. Likewise these years with our children, who are still young enough to climb into bed with us each morning, who still let us hold their hands and sing them to sleep. None of it is meant to last. Pausing sometimes to realize how good things are while they’re good, savoring those moments —  that’s perhaps the best any of us can do.

In late March of this year, Andrew and I got our second doses of the Moderna vaccine on what happened to be the anniversary of the day we met. We joked about the Hallmark cards we should give each other to mark the occasion — You’re still the only one I want to get inoculated with — and marveled that all those years ago, as we were getting to know each other over drinks with friends, we couldn’t have imagined the future ahead: that we’d be battling a global scourge side-by-side while also trying to shepherd two small humans into a frightening, fast-changing world. 

We didn’t imagine anything then. All we knew, when that evening ended, was that we wanted to see each other again. I remind myself of this sometimes when I’m lying alone in the darkness or walking in the woods beside him, building up my endurance — how that was enough: the desire for more time together. How, even amid the extreme togetherness of quarantine and the ceaseless demands of parenting, we still have that. We daydream about the trips we’ll take someday, and we work to schedule one-on-one time, silly as that would have seemed to us back then, when we were just starting to create this thing that has since grown bigger than both of us. Back then, when we couldn’t get enough of each other, when it seemed like we had all the time in the world.

Meaghan Mulholland’s writing has appeared in National Geographic, Salon, and Playboy, among other publications. She’s working on a memoir about critically endangered red wolves, which live nowhere else in the world but her adopted state of North Carolina. More information can be found at her website, meaghanmulholland.com.

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