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

Sara HabeinParenting19 Comments

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 editor of Electric City Creative.
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Sara HabeinParenting with Chronic Fatigue Syndrome (No Oxymoron Jokes, Please)

19 Comments on “Parenting with Chronic Fatigue Syndrome (No Oxymoron Jokes, Please)”

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  1. Profile photo of Sonia Saraiya
    Sonia Saraiya

    This is so brave and amazing. I have also struggled with chronic illness, and it is so inspiring to know that I could handle having children as you have. Thank you.

    1. Profile photo of Sara Habein
      Sara Habein

      I figure that any number of things make parenting difficult, and this is just one more thing. That’s not to say I don’t feel guilty at times or that I don’t have moments of wanting to run and hide in a dark room somewhere, but I think every parent feels that way sometimes, illness or not.

  2. Profile photo of Alicia
    Alicia

    Thank you for writing this. I have fibromyalgia and until recently I didn’t think I could handle having it and a child. Pain is my primary symptom, but I’m pretty much always fatigued, too. I worry that the fatigue will be too much if I become a parent. But lately my husband and I have been discussing becoming parents and I’ve been thinking of talking to a doctor about my options. I’m just worried that I’ll be a terrible co-parent because I won’t be able to do any parenting. It’s instructive and a little inspiring to hear how people are able to make it work.

    1. Profile photo of Sara Habein
      Sara Habein

      Of course I don’t know personally the level of your pain, but I would think that, yes, with plenty of talking about it with your husband and doctor, and also really learning what your limits are, you should be able to come up with some sort of plan, if you decide you really do want a child. Yes, it will be an added hurdle, but life’s full of hurdles.

      Take right now for instance: My daughter wants to play her toy Angry Birds game (The wood and ice are plastic! The birds are rubber and there’s a a catapult!) and I said we can only if we can make it work on the bed because I’m not up for sitting cross-legged on the floor right now.

  3. Profile photo of Sarah
    Sarah

    I really enjoyed this article. It’s always nice to read about how people cope with regular life things while having a chronic illness. It also shows me that there are ways to cope with chronic illness and having kids, so it’s still a possibility for me in the future. Since I was diagnosed with a form of inflammatory arthritis I have been on the look out for articles that are about more than just coping with a diagnosis. And you’re right, they are few and far between. I was wondering if you may have  come across anything about school and chronic illness? I’ve been taking a few courses in the past year, but I will be starting grad school full time in the fall and I am a bit nervous about it for a number of reasons.

    1. Profile photo of Sara Habein
      Sara Habein

      I haven’t really, but then I haven’t been paying attention either, since I’m out of school. (College and I had a brief affair not quite 10 years ago, and I like to say they broke up with me for being “distant.” *ahem*)

      I would think that when making your schedule it would be a good idea to know what your best times of the day are. Is there a time of day where you arthritis seems to really act up? Or certain situations? Or maybe it’s a case of cramming too much into a short period of time that could make symptoms worse? Being mindful of things like that could help with getting through school, I would think.

      Like for me, if I were to do it again, there’s no way I could have those dinner-time-ish classes between 4:30 and 7, as that’s usually the hardest part of the day for me. (I’m often telling the kids to just find something -ANYTHING- to do so I can make us dinner. And some days, I don’t feel up for that, so the kids are also familiar with “grazing,” in which I say, “Find something dinner-like. Soup, a sandwich, something like that. No cookies.” )

      1. Profile photo of Sarah
        Sarah

        Thanks so much for your input! I think you’re right about planning my schedule out carefully, that’s something I will definitely look into.

  4. Profile photo of LadyOverseas
    LadyOverseas

    Thank you so much for sharing your experience with us. Though I can’t begin to compare because I don’t have CFS, the way you describe your symptoms feels very similar to the way I feel when my depression is bad (which lately has been most of the time). Even though my symptoms are caused by something completely different, I’m feeling very encouraged by the positivity and acceptance in your writing. You don’t shy away from that fact that life is difficult with CFS, but at the same time you are proactive and realistic about what it means for your daily life. I’m striving towards that balance now but the pure exhaustion and memory loss and hangover/flu feeling are overwhelming.  I can’t say that I know what you are going through, but in some ways it feels like you understand what I am going through (did that make sense?). Anyway, I appreciated hearing about your life, and want to thank you again for sharing. You sound like an inspiring mother and partner.

    1. Profile photo of Sara Habein
      Sara Habein

      I do understand some, since as it happens, depression is another thing goes right along with CFS. Though my depression pre-dates my CFS, it has its ups and downs as well. Sometimes one feeds into the other. And yes, I’m trying to be pro-active. It’s taken a long time to get to being mostly in a state of “This is just a different way to live” rather than constantly thinking “This sucks.” I’m trying, and some days are better than others. And writing articles like this help me gain perspective on what I have, instead of getting bogged down in what I don’t.

  5. Profile photo of Juniper
    Juniper

    Thank you for sharing this – a very interesting read. Will be passing it on to Mr. Juniper, think he could definitely relate on a couple of point . As it happens, I’ve been hoping to do a Caregiving article on parenting before long. Again, thank you so much for sharing your experience.

    1. Profile photo of Sara Habein
      Sara Habein

      You’re quite welcome — I really do think there aren’t enough articles about parenting with chronic illness. I mean, the articles about coming to terms with it yourself are all well and good, but sometimes I think we need more stories about coming to terms with illness while also having to be the caregiver for someone else. And in terms of being with someone, being their spouse or partner or girlfriend/boyfriend, etc., and not just a caregiver/care-needer dynamic, which I know you’ve talked about before. I’m glad to hear this could be helpful for Mr. Juniper.

      1. Profile photo of Juniper
        Juniper

        I think there is a lack of articles on chronic illness and parenting/family because it is still a strange idea to some, that people with chronic illnesses have families in the first place. And also seeing that illness affects a family, not just the person with the illness. That’s really interesting that you mention being a partner and not just caregiver/care-needer! My Caregiving article tonight is about going on a date! I think the change that’s coming about, with articles like yours, is seeing that people are more than their illness and that is so, so important.

        1. Profile photo of Sara Habein
          Sara Habein

          Yeah, some variation of “I’m a pain in the ass, but you loooovvvvveeee meeeeee,” comes out of my mouth to my husband on a weekly basis, haha.

          I also hope that people who are single and perhaps are wondering if they’ll ever have a partner or a family of their own will realize that it’s still very possible.  It’s not something that only healthy people get to have, you know?

          On a related note: I hope that it makes my kids more understanding of people’s differences as well. My daughter is lactose intolerant like I am (yes, I have a wealth of things going on), but because she was used to seeing me adjust my diet and take lactaid pills when necessary, when she started having trouble with dairy at age 4, it wasn’t too big of deal for her. And she was old enough that she could tell me what was going on and because I had experience with it, I knew what to do. It makes things like Halloween candy more challenging, but she has enough perspective to know that it’s better than having a full blown dairy allergy (in which case, the lactaid pills wouldn’t help) or a gluten problem. AND she’s taken it upon herself to explain the difference between lactose intolerance and a milk allergy to everyone at school.

          1. Profile photo of Juniper
            Juniper

            Aw! Mr. Juniper’s version of “I’m a pain in the ass” is “Thank you for putting up with me.”

            That’s a really great point. Partners and family are most definitely not just for the “healthy”. I think that leads into your other point, too. I think as a result of our home situation, Juniper Junior is growing up to be a very compassionate little boy and as you say of your daughter, more understanding of differences. That’s great that your experience can be so beneficial to your daughter, too, with regards to her own health.

            1. Profile photo of Sara Habein
              Sara Habein

              Yes, “Thank you for putting up with me” is another frequent refrain. I try to remember to say thank you out loud because even if theoretically we all know I’m thankful, it’s still good to hear it.

  6. Profile photo of
    blueberries

    Great piece, thanks so much for writing it. I was diagnosed with Graves’ disease when my two oldest were teens and fibromyalgia when my youngest was about 2 (he’s four now). Parenting while chronic can be such a struggle, physically and emotionally. It’s always good to hear positive stories from people living it.

    1. Profile photo of Sara Habein
      Sara Habein

      I’m not familiar with Grave’s disease, but lately I’ve had some symptoms that suggest fibromyalgia. Not 100% sure yet, but it certainly seems like it, and I know it often goes hand in hand with CFS. Highly annoying, and you have my sympathies. Having a toddler jump on you when your muscles hurt makes for a very long day!

  7. Profile photo of Susan
    Susan

    This is so interesting.  I’m struggling with one fairly-well-behaved 2-year-old who hates to sleep.  I know you aren’t looking for pity, and I’m not giving it out, but I am full of admiration.  Rock on.  Cope as you need to, it sounds like you’re doing a great job raising thoughtful kids.

    1. Profile photo of Sara Habein
      Sara Habein

      Thanks. I really slept in today. My husband didn’t go into work until 11 am, but I slept past that (rousing long enough to say I’d see him later), and the boy was happily playing one of his Pencil Pal games on the computer. For once I didn’t get a “You’re taking toooooo lonnnnggggg!” and rather a “You should really get up now, Mommy.” Which was true. I thanked him for being a good boy and he said, “You’re welcome!” I wish it were that easy every day, but I’ll take it!

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