My youngest, 7, brought home a workbook about his family last week (to complete at home during online learning). There were various writing cues, including things like: “What Makes My Family Special,” “Our Languages,” and “Special Celebrations.” On the main page, his Grade 1 class had been tasked with writing a family overview; the Coles notes, so to speak, of our family.
I take these things with a grain of salt. In preschool – when asked on one of these templates what her father did at work all day – 4-year-old Abby wrote: “He does nothing.” This while we were in the middle of bootstrapping two small businesses and working night and day to get things up off the ground.
But still, Levi’s answer did stop me in my tracks.
“My Mommy likes to rest.”
Not, “My Mommy reads to me,” or “My Mommy takes me on adventures,” or “My Mommy likes to snuggle with me.”
Instead, he chose: “My Mommy likes to rest.“
*This is a public blog so I’ll spare many of the particulars, leaving savvy readers to fill in the blanks.
Since my first period at age 12, I’ve been dogged by issues. By 14 I was in a doctor’s office getting my first round of iron supplements for suspected anemia; by 18 my body had already rejected typical hormonal interventions to help combat the issue. Overall, though, things seemed tolerable. I needed a lot of sleep, but got through the days without too much trouble and concentrated enough to be a high performer academically.
But by the time I graduated from university, crushing fatigue had set in, along with occasional, debilitating migraines.
I went to another doctor, concerned about my suddenly fuzzy brain and unrelenting exhaustion. She told me I was overstretched – studying, researching, working, and planning a wedding. She prescribed a massage.
I pushed through, slept longer. Soon I was struggling to get out of bed each morning. After 12 hours of sleep, I would still wake up feeling exhausted.
After a year of this, I started needing a nap in the middle of the day, a first for me. Turns out I was pregnant! Suddenly I had a legitimate excuse for all this exhaustion.
I would nap on the linoleum floor of my lab, closing the door while everyone was on lunch break and telling myself that crashing on a cold, hard floor every afternoon was normal behaviour.
Then of course came the mind-numbing phase of infant care – an unexpected C-section, “failure” with breastfeeding despite Herculean efforts (#SheCanStillBeADoctor), and the anticipated (anticipated in the sense that everyone tells you what to expect…but nothing can prepare you for the intensity of being responsible for a helpless colicky infant 24/7; nothing I tell you) blur of days and nights.
But, I reasoned, fatigue with a newborn is par for the course. I kept plugging away. It was normal to feel tired, I repeated over and over. My body and mind had been through a lot, and sleep deprivation in those first few years is a special form of torture (periodic blissful middle-of-the-night snuggles aside).
For a time, my hormonal fluctuations and period issues seemed to improve. Another run-in with migraines was greatly improved by a few visits to the chiropractor. I felt like I could do this.
But then another baby came along which brought more fatigue (expected) and significant setbacks with monthly cycle issues (unexpected). I hit another wall. More bloodwork, more suggestions. More exhaustion.
And I’ve kept bashing and bashing away at that wall…and just can’t get through to the other side.
I’ve been living with chronic fatigue for over a decade now. And it’s hard.
About five years ago I got to the point where I could barely get up the hill on our family walking route. So my medical team broadened the scope of bloodwork and checked my ferritin levels. My ferritin came back rock-bottom. Success! I took new, specialized iron supplements and, for a time, things leveled out.
Until they didn’t. The iron stopped working; ferritin dropped regularly but even when levels were okay, I was blindsided by fatigue.
I’ve been to naturopaths and osteopaths and acupuncturists. I’ve had those doctor-recommended massages. I’ve talked to therapists.
I cut out gluten. Then I cut out gluten and dairy and caffeine. Then peanut butter (that one really hurt). I did Whole30’s. I went to get a meridian stress assessment and cut out soy and garlic. I saw an allergist (avoid grapes and mushrooms, he tells me) and was checked for Celiac. I took supplements – royal jelly and ginseng and all sorts of other natural remedies.
I’ve had so many sets of bloodwork, I’ve long ago lost count; complete thyroid checks and every hormone marker in the book. It all comes back…perfect.
I’ve tried the suggestions and my body seems to reject it all (sometimes literally; again, not going to share too many details here, but let’s just say a doctor told me a certain device that is supposed to work wonders for everyone and stay in place for 5 years was a dismal failure that my body literally rejected for, I believe, the first time among a patient in her practice. Go me.).
I’ve exercised (but not too much and, sometimes, when my body revolts, not at all) and made sure to get plenty of sleep (my recent short stint with insomnia aside). The kids have both slept through the night since about 6 months of age (I know, I know). I don’t smoke and I don’t drink and I consume very little processed food, focussing on fruits and veggies; I’ve eliminated this, that, and the other thing for months on end. I have textbook blood pressure and I’ve gotten my genetically-high cholesterol (thanks, Mom) to its best-ever level. I’ve cut out dyes and fragrances.
Various doctors tell me, somewhat sadly: “You’re doing everything right.”
It doesn’t feel that way to me.
In May of this year, I started iron infusions. “It’s time,” says my family doctor.
I sit and extend more arms. Endure more needles, more tests. Feel more glimmers of hope.
I wait the prescribed months and sadly answer: “No better.“
I still wake up each day tired.
I try cold showers. For months. They are as terrible as they sound. I give myself happy checkmarks in a bullet journal for enduring these icy blasts. I give up and go back to scalding heat. I’m no more – or less – tired for it. I’ll forgo the checkmarks.
I try intermittent fasting (it helps…a bit…sometimes). I try caffeine, and then no caffeine. I drink raw kombucha; I buy tyrosine. I drop Vitamin D suspended in olive oil on top of my tongue and dissolve B12 under my tongue.
A few months ago, for the first time, we decide to try SSRIs. Maybe it’s all in my mind, I wonder?
I talk to a therapist again. This one is lovely with her soothing accent; yes I struggle with anxiety (don’t we all) and perfectionism, but she tells me I have a good mental health toolbox, that I’m doing: “The right things.” I’ve heard this before.
So I talk and I swallow and I’m still exhausted. (*Update: I had a number of side effects when trialing an SSRI and, in agreement with my doctor, relatively quickly went off the medication.)
Last week I called my OB/GYN. “It’s time,” I said. One major energy drain (literally) will be behind me, but this surgery brings new risks, especially because of scar tissue from my C-sections.
And I can’t help but wonder (worry) – what if this doesn’t “fix” me either?
To others (friends, family, anyone here reading) I may look like I have lots of energy.
I do my best.
I show up: I go to church and I grocery shop and I read and take the kids skating and sledding and make meals and go out for coffee with friends and help pick the colour of our siding and make photobooks and decorate Christmas trees and enjoy at-home date nights with my husband. I love it all. Those moments are truly precious and joyful.
But I feel like I’m moving through molasses for almost every single moment of those experiences. My brain is fuzzy and my body aches and I’m so tired of being tired.
This post isn’t a call for sympathy (really!). Because I’m learning: we all have our hard thing.
I know of a reader who struggles with rheumatoid arthritis. I’m sure others struggle with chronic injuries or dietary intolerances or long-term stress at work or aging parents or challenging teenagers or all of those things combined.
I have friends facing relational fractures, auto-immune disorders, debilitating allergies, and long-term impacts from cancer treatments.
We all have our hard.
And I’m just waving my hand to say: having an undiagnosed and/or chronic condition can feel…lonely, exhausting, and depleting.
I don’t try to hide it…but I do try to hide it. I don’t want to be a burden, yet I feel the weight of it all. And I know it shows, despite my best efforts; he’s right – Mommy does like to rest.
I can either live life through it, or I can curl up and sleep life away. Either way I’ll be exhausted, so I might as well be exhausted with memories. The vacations and the trips and the joyfinding – they almost all happen in a haze of exhaustion. It’s my normal. And you learn to live with it, but you also don’t.
Wishing you all healthy bodies and restful sleep but know that whatever hard you’re wading through now, it’s okay to whisper – or shout – that it’s hard. Because we need to share the hard and share the joy.
Look for more of both from me here…