“This exhaustion is cellular”: Excerpts from the new book ‘What Is Myalgic Encephalomyelitis Like?’

Essays focusing on Severe Myalgic Encephalomyelitis (ME), from a new book by an international group of writers documenting their ME experiences.

Graphic showing the cover of the book, 'What Is Is Myalgic Encephalomyelitis Like?' on the left and a black and white photo of writer Madelleine Muller on the right. The book cover features dark blue boxes with white text over an abstract painting in shades of blue, green, yellow, and white. Other text on the cover notes that the book was created by the WIMEL writers with a foreword and other contributions by Bateman Horne Center. In the photo of Madelleine, the writer is resting and wearing sunglasses and earplugs. — Sources: Courtesey WIMEL writers and Madelleine Muller

This introduction and essays were originally published in the book, What Is Myalgic Encephalomyelitis Like? (WIMEL). The Sick Times has reprinted them with permission.

About the What Is Myalgic Encephalomyelitis Like? (WIMEL) writers:

The WIMEL writers are an international group of people living with ME and related illnesses who come together to write. Our goals are to advocate and spread accurate, truthful information and awareness about ME, especially to healthcare professionals, students, and policy-makers who may have limited knowledge about the illness.

We meet online to read, write, and discuss the complex experiences of people living with ME. Most members who attend our meetings are severely disabled and are lying down, housebound, or bedridden.

Writers who have contributed to this book reside in Canada, Colombia, Denmark, England, Ireland, Scotland, and the United States and represent a wide swath of severity levels, experiences, and outcomes. Writers have been encouraged to use their native terms and spellings, emphasizing the commonalities between people with ME across the world.

We welcome all readers, regardless of their background, to enhance their understanding of ME through reading about our experiences that highlight both the subtle nuances and the larger, multifaceted complexities of living with ME.

We hope that after reading our book, healthcare professionals, students, and policy-makers may have increased confidence in forming beneficial partnerships with people with ME throughout their careers.

Severe ME: Energy deficiency and post-exertional malaise

I have lived with ME for over 12 years, and it has progressively worsened during this time. Because of my lack of energy, I haven’t been away from my house since 2019, except for the odd hospital visit here and there, and that involved a gurney and an ambulance. I can be upright for only about two minutes in total, which means my feet touch the floor for about 10 or 15 minutes on average a day, in which time I can walk roughly 300 steps. These steps are often painful and feel wobbly. Even after taking only five steps, I yearn to lie down because it feels like my body is turning into lead and gravity is forcing it down. I can walk roughly 10 meters (32 feet) in one go, then my muscles give out, and I fall to the floor. My lack of energy production, combined with the difficulty and complexity of pacing, means my dad often has to pick me off the floor and carry me to my electric wheelchair to get me to bed.

On some afternoons and evenings, I’m helped onto the couch, and my parents and I watch a bit of easy television (no documentaries or anything with too much talk or information) with the curtains closed and all lights dimmed to prevent overexertion. We have installed dimmers on most of the lights in the house because I’m very light sensitive, and too much light leads to PEM [post-exertional malaise]. I wear sunglasses because the light from the TV is too much, even though I turn the background light all the way down. I watch TV with the curtains closed, wearing sunglasses and surrounded by heated cherry pit bags.

If I go to the hospital, or something else happens where I become overexerted (at the hospital, it’s mainly from sensory input and talking to the medical staff), I will get PEM, and even after I recover from the immediate crash, I will need to use my wheelchair for everything. That’s why I hate going to hospitals. Last time it took me a month to recover sufficiently to be able to go to the bathroom (which is 10 steps away from my bed) without my electric wheelchair, dress myself, or put toothpaste on my toothbrush. At the hospital, they had placed me in a busy corridor full of neon lights for six hours. When I came home, I couldn’t move at all because I had lost all contact with my muscles. They were so drained of energy that there was nothing left in them.

Severe ME is not the worst; it can get much worse than this. It’s called very severe ME, and people at this severity are usually 100 percent bedbound and have difficulties talking, eating, or feeding themselves. They cannot have visitors and may not be able to tolerate any form of touch, light, or sound. They are in a next level of pain. I’ve had periods where I dipped into very severe ME, but thankfully, medication, lots of rest, and daily care from my parents helped me get a bit better. Not everybody reacts well to medication and pacing, so in that sense, I feel lucky.

I can walk roughly 10 meters (32 feet) in one go, then my muscles give out, and I fall to the floor.

Summary: I have severe ME, and if I go to the hospital, I will get PEM. That’s why I hate going to hospitals. Last time it took me a month to recover sufficiently to be able to go to the bathroom (10 steps away from my bed) without my electric wheelchair, dress myself, or put toothpaste on my toothbrush. At the hospital, they had placed me in a busy corridor full of neon lights for six hours. When I came home, I couldn’t move at all because I had lost all contact with my muscles. They were so drained of energy that there was nothing left in them.

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Severe ME: Pain

I’m in pain all day. Different kinds of pain. I have neuropathic pains in my feet. These worsen as soon as I use my brain, or if there is too much wind vibration outside, or if I don’t have my hot cherry pit bag directly on my feet.

Then there’s the ME pain of exhaustion. This is not something an able-bodied person will ever have felt, even at their most exhausted. This exhaustion is cellular, and it feels like every cell is cramping, vibrating, and hungry at the same time.

Then there are the knife pains. They come here and there and are very sudden. They often hit my brain but can easily hit any area of my body, too.

And the acid pains. This feels like my body and brain are on fire from the inside. Sometimes the acid even hits my tongue and lips, which I find very odd.

I wouldn’t call this a pain as such, but I feel seasick most of the time, especially if I’ve overdone something like thinking too much, scrolling on social media, or being too restless.

I am on medication that takes the top off the worst pains, and it has also taken away the constant flu-like feeling I previously experienced. I used to feel as though I was poisoned and that I had painful venom running through my veins. I couldn’t close my eyes because my brain was going haywire with random flashing lights and broken images, but medication has helped to reduce those symptoms, too. I still feel poisoned, but not as much as before. While small, the relief I get from medication makes all the difference because I no longer think about wanting to die to escape from all the pain.

I don’t remember what it’s like to live in a body that isn’t ill. But when I think about it, if a healthy person jumped into my body, they would have an immediate panic attack and believe they were about to die because that’s what it feels like—I’ve just gotten used to it somewhat.

My existence is filled with astonishing pain.

Summary: My existence is filled with astonishing pain. I have neuropathic pains in my feet and knife pains that suddenly hit my brain. Acid pains feel like my body and brain are on fire from the inside. I feel poisoned with painful venom running through my veins. Then there’s the ME pain of exhaustion. This exhaustion is cellular, and it feels like every cell is cramping, vibrating, and hungry at the same time. If a healthy person jumped into my body, they would have an immediate panic attack and believe they were about to die because that’s what it feels like.

These pieces were originally published in the book, What Is Myalgic Encephalomyelitis Like?, a project completed by the WIMEL writers in partnership with Bateman Horne Center and MEAction. The book is available for purchase on Amazon.

Madelleine Muller is a writer based in Denmark, living with ME since 2011. Read more about Madelleine’s severe ME at her blog, madelleinemuller.com.