Category: Chronic Fatigue Syndrome

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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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#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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#11  The Slow Process of Accepting Loss

            Have you ever noticed how films often use just one scene to show a character accepting a great loss? The character has an enormous cry in which all their grief pours down their face in tears and snot. Outside, thunder rumbles and rain beats down. In agony, the character falls to the ground after, perhaps, breaking something valuable, a metaphor for their former selves. Cut to the next scene: The character is shown leaving a house or entering some other building, with purpose, with confidence. They are a vessel emptied and refilled. The action of the film can now lead to its conclusion.

            I have not found loss to be like that at all.

            I cry in little bits. I pour off a tiny portion of whatever was in the vessel—my former me, former relationships, former goals—and for a while, maybe a long while, I just have less in the vessel. Less of a self. I’m four ounces of wine in a six-ounce glass; a pint of milk in a quart bottle.

            In time, something I read or something someone says or something I experience adds a dram to the bottle. A bit of new wine, maybe better quality. A spoonful of fresher milk. I’m, say, sixty percent the old me and ten percent the new me. Still kinda empty.

            After a while, I do a little more crying. I empty, am aware of the lack of me, and then fill a wee bit more. Now I’m fifty parts old and twenty parts new.

            And so, over time that stretches as far as hope is from despair, I reckon with losses.

            I should probably spend more time on this loss and transition process than I do. I could meditate, read, walk in the woods, write in a journal. But I’ll tell you, I am really resisting this emptying and filling business. The truth is, as much as I complained about the details of my life before chronic illness, I liked a lot of the basic contours. I. want. to. keep. them.

            I want to keep my career, and specifically my most recent job. I want to keep my colleagues and my mentors and my students. I want to keep my involvement in my children’s lives, my visits to family, my time with friends. I want to travel more than I did, not less.

            I’m very reluctant to let go of the old and extremely uncertain about the new stuff I’m putting in the bottle, or whether there even is anything to put in the bottle.

            But I think it must be done. And maybe moving into the new, with courage, means crying in bigger bits, letting go of larger amounts at a time, sitting still for longer, and filling with greater amounts of quiet and unanticipated new.

            After quite a few years of illness, I think I know how to do that. And I think I shall.

Photo by Zoe on Unsplash
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#10 If I Keep On Hiding

There’s a conundrum in writing about a chronic illness: tell the whole truth and you sound pathetic; keep the sad details to yourself and you’re not telling the truth.

The truth of a chronic illness like CFS or fibromyalgia or long covid is, well, yes, pathetic, both in the sense of arousing pity and in the sense of miserably inadequate (the two definitions offered by Google).

Neither sense is appealing for the person who considers sharing full descriptions of a chronic illness. So why bother?

I’m not sure why I feel a need to describe chronic fatigue syndrome, or why for the past year and a half I’ve hesitated so completely to do so that I haven’t published a single post on this blog. For one thing, I haven’t rested as I said I would, I haven’t stayed within that energy envelope (which, as it turns out, fluctuates wildly), and I’m not any better than I was a year and a half ago. I feel embarrassed, a failure. When I look at the day-to-day realities of my life, I see them as pathetic in Google’s second sense—miserably inadequate—and I fear that others will see them in the first sense—worthy of only pity. I do not want to be pitied.

I do, however, want to be known.

I listen to The Secret Sisters sing “If I keep on hiding, how will I be known / I keep telling myself that I’m better alone”* and I know that voice is mine. It’s easy to stay silent, hard to write, easy to avoid, hard to engage, easy to hide, hard to risk pity in the hope it might turn out to be love.

Image by Annie Spratt from Pixabay

* The Secret Sisters, You Don’t Own Me Anymore, New West Records, June 2017.

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#4 What Is Chronic Fatigue Syndrome?

It must seem like a name that could apply to almost every American adult: chronic fatigue, aka always tired. Aren’t most of us working too many hours, called on to care for too many people or causes, and sleeping far too little? Don’t too many of us need caffeine to get going in the morning and a sleep aid before bed at night?

Yes, we are, to a large extent, a nation of people in need of not just rest but an intimate knowledge of how to rest.

But chronic fatigue syndrome, as doctors know it, is something else altogether. Many prefer that it be called myalgic encephalomyletis (ME), but honestly, who can even pronounce that name, let alone have a sense of what it means? (In the medical literature and online, the condition often goes by the acronym ME/CFS.)

The fatigue of chronic fatigue syndrome is something entirely other than the tiredness or exhaustion that most of us feel when we’ve, say, worked too many long days in a row, or had a few nights of poor sleep, or labored in the yard on Saturday and now on Sunday need a long afternoon nap.

The fatigue of CFS feels like someone has drilled holes in the bottoms of your feet and drained out all your blood. It’s feeling, when you wake from twelve hours of sleep (yes, twelve), that you have just finished a long day and need twelve hours more.

The U.S. Centers for Disease Control stipulates three conditions that must be present for a diagnosis of chronic fatigue syndrome:

  1. Greatly lowered ability to do activities that were usual before the illness. This drop in activity level must last six months or longer.
  2. Post-exertional malaise, or a worsening of symptoms after physical or mental activity.
  3. Sleep problems.

Other symptoms include problems with thinking or memory (brain fog) and worsening of symptoms while sitting or standing upright.

Check, check, check, check, and check.

The weird ones to me are the post-exertional malaise and the worsening of symptoms while standing up. I can tell you that there are moments in almost every day when I must lie down. This reminds me of the way hunger would hit with a vengeance when I was pregnant. One minute I’d be fine, and then the next minute I had to eat. Now. And just as with pregnancy hunger I needed a full meal, not a few crackers, with CFS the need to lie down can’t be satisfied by just sitting down. My body has to be horizontal. This symptom, perhaps more than any other, keeps me house bound. There’s no convenient place to lie down on a protest march or a walk through a museum or a hike by the river.

Post-exertional malaise is the other funky one. A long walk on a pleasant day is like a bank withdrawal that puts your account in the red. There’s no way not to pay up, which, in the case of chronic fatigue, means spending the next day in bed.

The worst part of all of this is its effect on my family. I know what it’s like to go through adolescence and into young adulthood with a parent who is often in bed. It’s not right. It gives one a shaky feeling about the world out there, and the world in here. I hope my children know that I would give every possession I have, every possession I will ever have, every past, present, and future reward or pleasure, to change this.

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# 1 Introduction

No one expects to become ill. Well, okay, I know lots of us harbor anxieties that we will end up with the diseases and conditions that seem to run in our families. Both my grandmothers had breast cancer, so in the back of my mind, wiggling about like a little worm, is a subcutaneous worry that I might end up with breast cancer too. But I’m guessing that most of us, if we’ve enjoyed nominally good health in the past, go about our days thinking that we’ll have decent health tomorrow too.

 And then suddenly, perhaps because of an infection, or gradually, like the diminishing daylight in November, we find ourselves with a diagnosis. Even if a friend has warned us—Julie, if you keep going this way, you’re not going to see your kids through high school—we’re still shocked when a doctor tells us that we have a chronic illness that is difficult to diagnose and has no known cure. And then, six months later, we’re even more distraught when she tells us that, based on our blood work, that chronic condition is actually caused by another, underlying chronic condition with no known cure and about which little research is being done.* So we’ll just have to experiment with symptom relief for as long as it takes. Meanwhile, rest. Stop working (not that we’ve been able, for some time, to work at all). Accept help from others (but we are Midwestern! And German/Norwegian!).

And so, without any preparation, mental or physical, we find ourselves in the ranks of the chronically ill, and the world as we have known it, indeed our own bodies as we have known them, are whisked away into a past that suddenly seems more golden than it did when it was the present.

The disorders I’m dealing with are complicated and almost entirely unknown by the general public. Trying to explain them to family and friends is exhausting and discouraging. So, since writing, for me, requires less effort and brings greater satisfaction than talking, I’ve decided to share what I hope will be a healing journey here in this blog.

If you’ve happened upon this page, feel free to read future entries, or not read them. We live in a busy world; following a blog is a big ask, and it’s just not many people’s cup of tea. All I do ask is that if you respond in the Comments section, please be kind. Kindness is healing for all of us.

Good night, and joy be with you all.

Julie

*When I originally wrote this post, I was under the impression that ME/CFS is caused by Mast Cell Activation Syndrome (MCAS). I have since learned that MCAS is more likely a comorbid condition with ME/CFS.