Parenting with Chronic Fatigue Syndrome (No Oxymoron Jokes, Please)

My 8 year-old daughter said to me recently, “Mommy, I wish you weren’t tired all the time so we could do more things together. Like go to the park.” Now, to be fair, we occasionally go to the park, but it is far from a regular habit. Whether kids intend to make us feel guilty or not, we think there’s always something more we should be doing. Those thoughts are all the more intense when the parent has a chronic illness.

I’ve mentioned before that I have Chronic Fatigue Syndrome, often abbreviated as CFS. It’s an extraordinarily understated name for a condition that can leave sufferers bed-bound or otherwise disabled. The way it manifests differs widely – and why that is has yet to be scientifically understood – but the best way I can describe it, personally, is that it’s often like having the flu and a hangover, without the puking. (You can read more about the symptoms here.)

Before I get into it, I want to stress that this is not a pity party, nor is it an event in the “You think you have it bad?” Olympics. It is what it is. Because I do not often see articles that talk about life with CFS and children, I am compelled to do my part. What are personal posts but a mix of vanity and empathy? My hope is that anyone who has a family and an illness, either mental or physical, will be able to relate.

I’m grateful that my symptoms are not severe enough to keep me in bed every day, but they are plentiful enough to where I am not able to work a regular job and still effectively parent my two children. And on some days, I have to turn over the bulk of that to my husband because if I raise my head off the pillow again, I might lose what little sanity I think I have left. Yes, I am grateful to have him too.

Most mornings go like this:

  • The mister takes our daughter to school. I sleep.
  • He returns, checks his email and washes the dishes if he has time, and goes to work, usually around 9 or 10 a.m. I sleep.
  • Our 4 year-old son has either already woken up when his sister did (at some ungodly hour, since she’s always the first awake), or he wakes maybe around 8:30 a,m. I’m not really sure, since I am usually sub-subconsciously deep in some whacked out zombie apocalypse dream where I am also re-encountering every person I’ve ever met. My brain doesn’t really fall into “good sleep” until about the time I “should” be getting up.
  • By about 9 a.m, the boy has settled into Nick Jr. all on his own, but if Dad’s already gone, he starts nudging me. “Mommy. It’s 10:30.” No, it’s not, I mumble. You can’t even tell time yet. “You are taking too long,” he says.
  • He will keep saying, “You are taking too long,” until I get up. The fifty pound dog will join him by jumping on the bed and doing the “I have to pee” dance. The amount of time I am able to ignore this varies.
  • My stiff joints, knotted muscles, and bleary head somehow manage to pry themselves out of the bed and make it to the kitchen. I get the boy whatever he couldn’t reach on his own before I woke up.
  • 3 cups of coffee, 2 pieces of whole wheat toast. A pile of various vitamins, supplements and prescribed things, down the hatch. Every morning. If I don’t do everything in the exact same order, I have trouble remembering if I did it or not. When it comes to pills that make me more of a functioning human, it’s important to know I took them.

It could be noon by the time this process is done. I am aware that I should also be grateful that I have children who won’t destroy themselves or the entire house if left to their own devices. I am, truly, but that doesn’t mean they don’t use my condition to their advantage.

Symptom, Brain Fog: “Oh, we’ll just turn on the TV and hope you forget that yesterday that we lost TV for the day because of [x thing] we did. And if we never mention that you told us to do [x undesirable task], we’ll see if you remember that too.”

Symptom, Exhaustion: “You’re napping? Awesome. We’re going to get out aaaaallllll the watercolors and do Jackson Pollack-style paintings on all these cardboard boxes. Without drop cloths.” (Well, that’s only happened once, thankfully.)

Symptom, Noise Sensitivity: stompstompstompstompstomp “You’re taking too lonnnnnngggg”¦”

Any of you who have survived having a 3-year-old (far, far more challenging than that “Terrible Twos” stage), know what particular nightmares come with things like bedtime. The mister used to work at night then, and I barely survived the toddler tantrums in his absence. That he’s approaching 5 now makes it easier to reason with my son.

Still, there are upsides. I’m lucky my kids are such best friends, and if anything, I’ve learned to let the small stuff go. Apart from that morning routine, school, and a fairly consistent kid-bedtime, no one is on a regimented schedule. The kids do extra things like occasional art classes or storytime at the public library, but I am not one of those mothers who has to fill every second of their kids’ lives with “enriching activities.” They know how to amuse themselves, and that’s fantastic.

My illness has made me sympathetic to their mental and physical states, as well. The ironic thing about CFS is that one of the symptoms is sleep trouble – something with which I’m well familiar. My daughter’s mind goes about a million-revolutions-per-minute, and she’s also hit the age where she gets growing pains in her back and legs, so she also has trouble sleeping. We joke that it’s a bit of a blind-leading-the-blind situation, but if there’s a remedy for aches and pains, I’ve probably tried it. I attempt to steer her towards more meditative thoughts, somewhat akin to counting sheep, when she can’t settle her mind, but she mostly looks at me like I’m ridiculous.

Sick or not, I also know that I have several years ahead of me with my kids looking at me like I’m ridiculous. Hey, I try.

The smallest, and perhaps silliest, thing I’ve let go? Matching socks. Dude, laundry sucks for everyone, but when my husband is already doing most household things for me on top of working full-time, I feel like I have to do something. (I’m also usually the one making dinner, but I like doing that.) I had a fibromyalgia patient once tell me that laundry was the clearest barometer of how she was feeling. The worse the laundry situation, the worse she felt. I’m with her. As long as no one minds fishing unfolded clean clothes out of baskets and wearing whatever two socks they find first, I feel less guilty about how slow I am at getting it all done.

I’ve had CFS for three years now, but I’ve only known what it was for a little over a year. Our day-to-day life is a constantly evolving process. I will have more opportunities to rest and clear my head once my son starts school in the fall, and hopefully that will make me more mentally present and upbeat when both kids come home in the afternoon. The guilt and “what-if?” and frustration are certainly trying at times, but I’m doing my best. It’s difficult to explain to anyone, much less kids, that I have this invisible thing that hinders many areas of my life, but with a hefty dollop of patience, we’ll be fine.

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Sara Habein

Sara Habein is the author of Infinite Disposable, a collection of microfiction, and her work has appeared on The Rumpus, Pajiba and Word Riot, among others. Her book reviews and other commentary appear at Glorified Love Letters, and she is the co-manager of Electric City Creative.