Tag: living with ME/CFS

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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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#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