Category: Daily Life

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#16  Something Is Not Right

            I wrote this piece some years ago when I was still working. The fifty-year-old daughter of my mother’s best friend had died instantly of a sudden heart attack while out running with her dog. The dog stayed by her side on the snowy sidewalk until they were discovered.

            The piece isn’t specifically about chronic fatigue syndrome, but I think it belongs in this blog for two reasons. One, the vast majority of ME/CFS patients are women. I hope both medical researchers and sociologists are looking into why that is the case. Two, the lack of exercise in my life now due to the risk of post-exertional malaise, combined with a family history of heart disease, does have me worried about my own cardiac health. Living with chronic fatigue syndrome has slowed me down immeasurably, but I know I still need to pay attention to the things that are not right.

            All over the United States, women in their fifties and sixties are dropping. Into snow banks as they run their dogs, on the floors of their bedrooms as they rise from another poor night’s sleep, in the aisles of grocery stores between the boxed pastas and the canned vegetables. They have no time to clutch at the hearts that are ceasing to beat. They have no warning.

            Except  . . .

            . . . the feeling on some days or over weeks or even months that something is not right. Not the same things that are always not right—the subordinate positions at work that don’t do justice to their skills and intelligence, the exhausting tensions between their husbands and sons, the hunger they feel all the time because lunch is never more than crackers and an apple. This is something different, something hard to touch. No chest pains. Maybe some heart palpitations. No pain in the upper left arm. Maybe an uncharacteristic headache. A touch of nausea. Catching themselves about to fall at the bottom of the stairs. Putting the kitchen sponge in the refrigerator.

            And then, without any warning at all, they are gone. Their families are in shock. Their friends and coworkers protest, but she was so healthy!

            What the friends and loved ones didn’t see was how many times a day these women paused, their fingers over their keyboards, and thought, why in hell do I have to reply to this email? How many times a day they pushed themselves up from their desks to solve another problem that was supposed to be someone else’s responsibility. How many times they hoped someone else would plan and cook the nourishing dinner they really needed. How many times they got in their cars and quick turned on the radio because if they left themselves any quiet in which to think they would come to conclusions their lives would not support.

            Instead, they kept going—working, shopping, solving, caring—until that thing they couldn’t touch became their last hard truth.

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#15  O Gentle Sleep!

            You’d think someone who suffers fatigue would sleep like a baby, often and long. It is not so.      

            The cruel irony of ME/CFS is that sleep is as hard to come by, and as unpredictable, as love or fortune. Sleep can come easily by ten p.m. one night and hold off until three a.m. the next. It can hit at one in the afternoon, like a sudden, unforecasted snowstorm, last for five hours, and then stay away until dawn the next day. If it settles in at a normal time in the evening, it might very well stick around for the entire next day, while most folks are putting in a full day’s work.

            Most of the time, sleep hangs around way too long in the morning, sometimes until noon. And then every so often, for no reason at all, it departs at daybreak and gives me what I almost never get: the hope of the rising sun and a full day of wakefulness.

            Sleep is like the poor rabid dog in Old Yeller, zigzagging down the street at the end of the story with no control over its movements. Sometimes, I just want to shoot it.

            As I understand it, sleep is like this for most people with ME/CFS. I’m not sure anyone truly understands why. (If you have an explanation, please share!) I believe one theory is that our autonomic nervous systems are awry, so the things our bodies would normally do without thought—sleep, digest, fight infections—they don’t do very well.

            Of course, many older adults struggle with sleep. Such struggles are not uncommon. When I’m up in the night, even as late as two or three, I can see the light on over at my retired neighbors’. And I know my husband often wakes long before his six o’clock alarm, wishing his sleep had lasted longer. Nevertheless, I have the sense that, for the most part, adults my age are heading to bed some hours after the sun has set and are waking around the time the sun is rising, give or take. Whatever difficulties they may have with sleep occur within a basic regularity of sleep and wake cycles.

            The only way to capture the difference between “normal” sleep and ME/CFS sleep is to picture it, so I created two charts.

The first is a chart of the hours I imagine a healthy adult sleeps and rests. Sleep is shown in blue, rest in purple. This adult gets into bed around ten on weeknights, reads for a while, and then falls asleep. On Friday and Saturday nights, she watches TV and skips reading. Watching TV that late may very well keep her awake, so she sleeps in a bit on Saturdays and Sundays and sometimes enjoys a rest on Sunday afternoons.

Normal Adult Sleep and Rest Chart

            This is, of course, an imagined average, from which actual adults surely vary widely. My sisters, for example, are in bed by nine and up well before six every day, including weekends, and I doubt they’re getting a nap on Sundays. Some of my friends are night owls; they’re awake after midnight, productively engaged, and then rise later in the morning. The key, though, is that their patterns are fairly regular.

            Now my own chart. Again, sleep in blue, rest in purple. And rest does really mean rest: lying in bed listening to music or a podcast or doing nothing. Watching TV and reading do not count as genuine rest for people with ME/CFS.

ME/CFS Sleep and Rest Chart

            The most notable feature of my chart is the far fewer white squares. This is what I mean when I tell people (the few I do tell) that I have a limited supply of “energy dollars” to spend each day.          

Having few energy dollars means that I will miss out on things and not accomplish much. But the really awful part of sleeping like this is the embarrassment.

            One day last summer our ninety-year-old neighbor knocked on our back door shortly after eleven. I felt I had to answer because he might be in need of something, but I was in my pajamas and bathrobe. When I opened the door and he saw me, an awkward chortle escaped him. He looked down at the floor. I could only guess what he was thinking: Why is my neighbor in her night clothes in the middle of the day? My cheeks burned. (I haven’t explained my illness to this neighbor, nor to many others.)

            To sleep in the middle of the day, when other adults are working, contributing to society, socializing, and just generally being adults, is to land in the realm of childhood—naps, and pjs, and lines on my face from the pillow at two in the afternoon. It’s not answering texts and not replying to emails and not picking up the phone. It’s eating a peanut butter sandwich for dinner because I wasn’t awake to prepare a meal. It’s incompetence squared.

            When family or friends ask me what I was “up to” today, I never mention the hours of sleep and rest. “Oh, I haven’t been too busy,” is my evasive reply. I can’t imagine that there is anything to be gained by telling them I just woke up and am still in my pajamas.

            And so the invisibility of ME/CFS continues. I perpetuate it by not being honest about the contours of my daily life.

            Consider this my confession.

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#14 What Do I Need?

            The light from a gray day in northwest Wisconsin is fading. Through the window in the cabin bedroom, the color is deepening from one adjacent Pantone shade to another, like someone is flipping through a color wheel. Soon I’ll see the reflection of what’s in the room rather than the trunks of the trees outside it.

            I’ve been in bed all day. My energy bank account is at zero. Actually, it’s less than zero. I’m in debt. I’ve been reminding myself to take deep, slow breaths, and with each breath imagining a shiny quarter dropping with a plink into a piggy bank.

            Earlier this afternoon, my husband stopped in the bedroom doorway and asked if I needed anything. After a moment, I shook my head, only because I couldn’t process his question quickly enough to give him an answer before he turned away.

            If I had been able to think more quickly, what would I have answered?

            Do I need anything?

            Yes. I need someone to bring me a bowl of warm food that’s easy to swallow.

Do I need anything?

            Yes. I need a friend or a family member or someone to ask me, how was today?

            Do I need anything?

            Yes. I need scientists to figure out the cause of this illness and discover a foolproof cure. I need them to have done that twenty years ago. I need all the doctors everywhere to be as educated about ME/CFS as they are about heart disease. Until they find a cure, I need all the doctors everywhere to have good ideas about how to manage this illness.

            Do I need anything?

            Yes. I need my friends to invite me to parties even if they’re probably right that I won’t be able to go. I need people to ring me up and tell me the latest news so I don’t feel so embarrassingly insignificant and out of the loop. I need my community to remember that I’m here and that I’m ill, even though they hardly ever see me and when they do I look fine.

            Do I need anything?

            Yes. I need the people from whom I’m asking these things to know that it’s truly okay that they don’t know what I need, because this illness is dismally uncharted territory for all of us. There’s no way they could know, and I do, truly, understand and accept that. But I need us to figure out what I need together, with no guilt, no blame, no recrimination, no apologies.

            In short, I need what every human being on the planet—ill or well—needs: to be cherished as part of a loving community, and to be accompanied all our days.

Photo by zengxiao lin on Unsplash

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#13 What Is Lost and What Is Found

A fundamental question for me in this blog is: How much do I rely on the tools of literature—story, character, image, lyricism—and how much on scientific objectivity? I know it’s not one or the other, but what is the balance?

We’re getting more scientific data about ME/CFS these days. Thanks largely to the attention paid to long covid, we have a better gauge of the number of people living with post-viral illnesses, what their symptoms are, and what treatments have worked, at least for some. We know a bit more about some of the biomechanisms of these illnesses, maybe a bit more about what’s happening at the cellular level.

But only through the details of story can I attempt to capture what living with relentless fatigue and post-exertional crashes is.

How do I communicate what is lost and what is found? How what is lost is the size of Lake Michigan, and what is found is the size of the pond at my cousins’ rural Michigan home when we were kids. We skated on the pond in winter, and in the summer, two pulls on a set of oars would row us out to the center of the pond, where we could slide overboard and swim without getting tangled in the weeds that filled most of the water.

On those visits to my cousins, would I rather have had the endless soft sand beaches, the wide sky, and the thrilling waves of Lake Michigan? Yes, I would.

But with my cousins, there was joking and laughter and a lot of sunshine, and all the kids and grownups eating burgers and potato salad afterward up at the house.

So it wasn’t Lake Michigan, but it lives in the memory as good.

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#12 A Typical Day

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.

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#9 Down By the Riverside, Part II

Turns out, resting is a difficult and perplexing pursuit.

We think we want to rest—I know I need to rest—but what we really want is to feel well rested. Then we can do the things we enjoy. Resting is a means to an end, not an end in itself. Resting is a pause in activities of value that enables us to do the activities of value. We say, oh how beautifully she dances or what a great cook he is, but we never say, oh how expertly she rests. Surely no one is admired for being good at resting.

And how would one be good at resting, anyway? Is there a competitive scale by which one could be judged? Points for duration, for resisting distractions, for resting prone instead of sitting upright, for keeping one’s eyes closed?

Years ago, Utne Reader magazine published an issue titled “In Praise of Idleness.” I was persuaded that idleness is a worthy enterprise. But idleness is not resting. Idleness suggests a relaxed state in which one is free to pursue whatever leisure activity comes to mind: sitting on the banks of a river contemplating the flowing water, lying in a hammock reading a book, sitting at a piano plucking at the keys (but not “practicing”). These scenes suggest a quiet engagement with the world, slow and relaxed, but an engagement nonetheless.

To rest, on the other hand, is to disengage with the world, to step out of the flow of time and human connection. An important and perhaps even life-extending disengagement if undertaken once in a while, perhaps even regularly, like a Sabbath, but believe me, a total bore when it forms your days for months on end.

Resting for me, so far, has meant lying flat on my back in bed staring at ceiling tiles. Or lying on my side noticing for the zillionth time that one of the knobs on my dresser is a shade whiter than the others. Sometimes it means listening to Madeleine Peyroux on Spotify; sometimes it means listening to no sound at all, except for the sounds I can’t stop—one neighbor’s barking terrier, another neighbor’s weed wacker. Sometimes, if I’m lucky, it will mean reading, but not for very long, because my brain tires as quickly as my body. Too much of the time it means scrolling through YouTube for a ticket to any mindplace but here.

In Part I of this post, I stated my intention to rest sufficiently to heal myself of chronic fatigue syndrome. To never crash, not once, to bank loads of energy dollars and never let my account fall into the red.

I am not looking forward to this.

I fear loneliness and boredom. I fear an empty mind and empty hands. I fear losing friends and missing out on the making of memories. I fear the deterioration of basic skills, like carrying on a conversation, navigating a shopping center, embracing a novel experience. I fear becoming old and strange and unknowable.

Could resting possibly be something else than it has been so far?

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#6 All Kinds of Tired

The truth is, there are all kinds of tired.

There’s the tired women feel when yet another man gets a promotion he doesn’t deserve or mansplains the obvious or sexually harasses herself or her friends.

There’s the tired black folks feel (I have not this experience, but I have ears to hear) when the knee on their necks doesn’t let up for one goddamn minute.

There’s the tired a father feels from working one sixty-hour week after another all the while watching corporate interests eat up his earnings.

There’s the tired of shopping, shopping, shopping and then buying containers and baskets and bins and ending up with the same unhappiness you started with, only now it’s accessorized.

There’s the tired of chemotherapy and the tired of addiction and the tired of feeling anxious or depressed all the time about nothing you can name. There’s the tired of not having enough and the tired of having too much, and the tired of not getting the one thing you’ve ever truly wanted.

There’s the tired of fearing that in this wealth gap, in this democracy under siege, in this rapidly changing climate, you will not be able to realize even the smallest of your life’s ambitions.

Everybody knows some kind of tired.

For me, chronic fatigue has made tired not just a personal experience but a social construct. I see it everywhere. Women and men, some with children, panhandling at intersections look so tired. Jamila Lyiscott, in her Ted Talk on having to code switch as a black woman, says, “I’m so tired of the negative images that are driving my people mad.” When Greta Thunberg said to world leaders at the 2019 U.N. climate action summit, “How dare you?” she seemed to me not only angry but exhausted. Tired of profits as usual, tired of the cowardice of the adults who are supposed to be managing the world for her future.

Many, many years ago when I first began taking notice of my health, a nutritionist said to a class full of women who were learning a new way to nourish themselves, “Most people just keep doing what they’re doing until they get tired of being tired.”           

Are we tired enough yet?

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#5 Crosby

To be out of step with the world and in step with a dog is a singular experience.

It is a quiet, secret existence known only to your non-judging companion. Only he observes all the mornings you can’t get out of bed until almost noon and all the afternoon hours you give up the quest for normalcy and lie back down. Your human family sees some of these mornings and some of these afternoons, but they, mercifully, are spared many of them because they are working or traveling or playing, as they should be.

Only the clear-eyed dog lifts his head every time he hears you crying for the life you’ve lost, and only his rough tongue licks your face every time you seek his thick, auburn fur for comfort. He’s the one who knows that, on good days, you hum when you walk, and on bad days, you don’t. In his soul are recorded your ups and downs, your prayers, your tantrums, your efforts to scrape yourself off the bed and into the world. His is a perspective that will remain forever unshared.

He died a week ago, and everything is empty: the bed, the rugs, the yard, the back porch. My face is empty. My hours are empty. The world’s observations of my life through his eyes are shut down.

Though I have tried in this blog to render a full picture of a life reined in by fatigue, no one—not one other creature—can know the outlines, shades, and contours of that life as he did. It does not matter that he could not speak to me in English of my experiences.

I spoke to him.

The silence of his absence is felt in the bones.

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# 3 What’s the Plan for Today?

This morning, my husband asked me my plan for today.

My reply: I have no idea.

It’s been a long time since I made plans for a day. Instead, I have hopes. Today, I hoped to do some grocery shopping and cooking, tidy up the kitchen, and plant the impatiens I bought yesterday. I truly thought it was a realistic list.

I was out of bed just before ten, had a cup of tea, blended my breakfast protein smoothie, and talked for a while on the phone with my sister and my mom. After I hung up, I thought a brief lie-down would be a good idea. Pacing is so important when you have fatigue. If you take the breaks you need, you can last longer.

I laid down at 11:30 a.m. thinking I’d need just twenty minutes of rest, but I fell asleep. When I woke, I was the opposite of refreshed and ready to go. Fatigue lay on top of me like fathoms of water. I turned just my head to look at the clock and felt the slump of disappointment that is so familiar these days. It was four o’clock in the afternoon.

I thought about the grocery store and the cooking and the kitchen and the impatiens. I kept thinking about them while I laid in bed, under the weight of an ocean, until about five o’clock when thirst and hunger pushed me down the stairs. I thought about them again when I’d had something to drink and eat. I could still get to the store. I could still plant flowers. Plenty of daylight left. But my arms and legs were weak strangers to me. They carried me up the stairs back to my bed, and that’s where I have remained.

Discouragement is the constant companion to chronic fatigue. It can pull you under and anchor you to depths you hadn’t known existed.

As much as I can, on days like today, I surface toward encouragements. In Pema Chodron’s When Things Fall Apart: Heart Advice for Difficult Times (Shambala, 1997), she writes, “We don’t know anything. We call something bad; we call it good. But really we just don’t know” (9).

I want to label the disassembling of today’s hope list bad. Negative. Disappointing. HopeLESS. Seems to me that it is all of those things. But Chodron may be right. I possibly don’t know anything. I possibly don’t know that there is some purpose to illness, some undiscovered sea creature of energy in the drowning of fatigue. So I don’t plan. I hope.

Hoping seems more in keeping with not knowing than planning does. So tomorrow, I’ll have a new hope list.

Julie

Photo by Julie Blake Edison on Unsplash