When Chronic Fatigue Syndrome Means You Have to 'Mother Differently'

I wake up, dizziness, a storm, gathering strength behind my eyelids. I can tell it’s going to be a bad day. I consider reaching for my phone, turning on my meditation that urges “my cells to heal my body” but I don’t quite have the will for it.

My children pitter-patter into my room. “How you feeling, kid?” my 3-year-old daughter Paige asks, climbing into my bed. She loves to pretend that she’s the mom and I’m her baby. We never played this game before I got sick and a little voice in my head whispers that this role reversal isn’t normal creative play, that it symbolizes my failure as a parent. Paige brushes my hair out of my eyes, before ordering me to, “Give your mother a kiss.”

My 5-year-old son Ethan picks up my pill case of the nightstand, pops out today’s dose, spilling them into my palm. “Here’s your get-better-medicine, Mamma.”

I cuddle them close, trying to make this moment count. They start telling me about everywhere Daddy’s going to take them today: Trader Joe’s, the zoo and maybe for pizza. They sound better than my plans which are: TV, sleep, contemplating a shower.

Later, when the slamming of the front door announces their departure, it feels like a layer of my skin has been stripped off. Alone time used to be a luxury, but since chronic fatigue has taken hold of my cells, pushing me out of my life, it’s fallout, an ugly necessity.

My children have been gone for a few hours when my husband texts me the first picture – the kids on the bug carousel, their smiles huge half-circles. Then every 20 minutes or so, I get another one comes until I turn off my phone. I know he’s trying to make me a part of their day but I can’t get past the fact that I’m not in a single picture and I don’t know when I will be again.

I first started feeling tired a year earlier. “Well, you’re a mom with two small kids,” other people said. “We’re all tired.”

But I knew that wasn’t it. My exhaustion permeated my bones and my head constantly felt like I’d just stepped off a carnival ride. I hopped from doctor to doctor and diagnosis to diagnosis: thyroid, vertigo, autoimmune issues. I took medication, went to vestibular therapy, did elimination diets, added supplements, and had acupuncture but I just got worse. The term chronic fatigue syndrome, or myalgic encephalomyelitis/CFS, started popping up. I didn’t want to claim it because it was one of those things that no one understood and no one could fix, like colic for adults, but with less hope of growing out of it. But month by month as I was able to do less and less, I wasn’t sure what else to call it.

Through Facebook, I connected with a friend of a friend who had been dealing with this for years. I read the articles she posted about advocacy for research, watched video clips showing “The Millions Missing,” showing the struggles of some of the estimated 1 to 2.5 million people pushed out of their active lives by this disease. We texted occasionally but I was afraid to call her because it meant acknowledging this diagnosis was mine. But finally one school vacation when I had to go to my mom’s for help with the kids because I was too weak and dizzy to get out of bed, I called.

We spent the first portion of the call, talking symptoms, supplements, the known and the unknown about the disease, but it wasn’t enough. I wanted her to tell me how to live with waking up each morning having your first breath end in a yawn and your muscles feeling like they’re caked in cement, to have the thought of walking three blocks to pick-up your child from school make you want to curl into the fetal position while the walk itself makes you collapse on the couch with barely enough energy to pick up the remote and turn on “Peppa Pig.” Most of all, I wanted her to tell me how I deal with the fact that I’m slipping out of my children’s lives.

“I hate that I can’t mother,” I lamented to her. “Their lives are going by without me.”

“You can mother,” she said. “You’re just mothering differently. You’re doing everything important.”

I didn’t believe her but I repeat her words daily anyway, swallowing them along with my stack of pills. I repeat them when Ethan begs me to go for a walk around the block until Daddy comes home. I repeated them when Paige cries because I’m supposed to be parent of the day at her playgroup but have to ask a friend to step in for me. I breathe her words in and out like a mantra as I pull my children onto my lap, asking them to tell me about their day, trying to weave my presence into their existence, even if after the fact.

I can’t say that I’ve found peace, because I haven’t. I hate this disease that has lay waste to my body and to the mother I thought I was. But I will not let it destroy the fierce kernel of love in my soul, will not let the loss of part of my identity, eviscerate the rest. So, I work my hardest to focus on what’s still there, like making up oogly-googly stories with Ethan and bunny foo-foo and fa-fa stories with Paige, kissing Paige until she laughs so hard she starts to cry, helping Ethan sound out the “letters of the week” while we cuddle on the couch.

I haven’t given up faith that I’ll get better. But if I don’t, I hope this is what they’ll remember – how my love was so powerful it exploded out of my pores like sweat, how I listened to every word about their day, how we created magic worlds with words, called out karate commands and dance moves and told knock-knock jokes that made no sense, even if 90 percent of it was from my place on the couch, my head resting against a stack of pillows.

Because I am mothering. I am. I’m just mothering differently.

This blog was originally published in Mothers Always Write.

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