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 hope?
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…
Header photo by Jason Blackeye on Unsplash
Wow, Elisabeth, this sounds so hard. I can’t imagine being that exhausted all the time and not having any answers or solutions. I’m so sorry you’re going through this, it sounds so terribly difficult. I wish they could find a solution for you, and it sounds like you’ve tried EVERYTHING. I hope the surgery helps. It sounds like it should! But, who knows, right? Hoping for the best for you.
Thanks, Nicole!
Oh Elisabeth. I am so sorry. This line really sums it up so well: “And I’m just waving my hand to say: having an undiagnosed and/or chronic condition can feel…lonely, exhausting, and depleting.” I feel this so hard. When you have a chronic illness or condition, it is not obvious to others and no one can really feel how you feel. And you don’t want to talk about it alll the time, but when it’s always buzzing in the background of your life, it can feel like you sometimes need to remind people that you are dealing with an extra challenge.
I hope the procedure you are looking to do makes a difference. It’s really hard when there isn’t a definable cause for why you feel the way you do. The anemia has to be so hard to deal with, though. I was borderline anemic during both pregnancies and especially the 2nd pregnancy. It’s hard to single out the exhaustion from that on top of being pregnant w/ RA (which was HORRIBLE) and having a 2yo but I just felt so incredibly tired. I wanted to describe the level of tiredness to Phil and he kept saying – I believe you, but I kind of wanted him to be able to feel how I feel so he could understand it even better if that makes sense.
“And you don’t want to talk about it alll the time, but when it’s always buzzing in the background of your life, it can feel like you sometimes need to remind people that you are dealing with an extra challenge.”
– This is so true! And some people I never tell about my energy issues, and so I feel like a few unfortunate souls bear the brunt of my complaining/lamenting.
Also:
“I wanted to describe the level of tiredness to Phil and he kept saying – I believe you, but I kind of wanted him to be able to feel how I feel so he could understand it even better if that makes sense.
– I talk about this regularly; I wish I could let people in to my existence (and try out other people’s reality) because after living with it for so long, sometimes you lose the concept of what is “normal.” I do wish people could experience what I feel, not because I wish it upon them, but just so they could gain a deeper understanding of my reality which – since it’s mostly hidden; I don’t have a broken leg – is largely maintained internally.
Oh, I’m so sorry that this is your life. It sounds terrible for you and your loved ones. Having an undiagnosed (diagnosable?) illness does feel isolating and lonely. Hugs to you and sending lively, feeling energetic thoughts your way.
Thanks!
I really do think that we’ve made life work (I’ve napped in the car a few times while the rest of the family has adventured, for example) and I suspect all the things I’ve tried have allowed me to function at the level I do (?!), I just want others to know…it’s okay to admit when things are hard.
Sending you hugs. I have a chronic autoimmune disease and when I got diagnosed , I was both bine tired and brain-fuzzy and it was the absolute worst.
Living with, or through, such symptoms as you describe, is tough. Really tough.
Hugs again.
Thanks, Kat!
That sounds incredibly hard. I cannot begin to imagine trying to function when you are always tired, it makes everything incredibly hard to do. I do hope you find someone who can give you an answer. I have a chronic health condition which has been in remission for about 16 years, I couldn’t imagine trying to parent with that flaring up all the too. Sending you some energy packaged with love x
It’s hard, but everyone has different hards and I know I have lots of other advantages that help compensate that others might not. I’m definitely still hoping to get to the bottom of things, but admitting it’s hard and then getting back to life does help!
By the way, I’m so glad you’ve been in remission for almost two decades. That’s wonderful.
I dealt with severe fatigue after the birth of my oldest and thought it was “normal”…until we figured out I have an autoimmune disease. While it’s never fun to get a diagnosis, I was SO RELIEVED because it meant that my condition had a name and a possible treatment (or series of treatments).
I cannot imagine the frustration you’ve dealt with over the past decade, knowing that SOMETHING is off but not knowing what exactly it is. Normally for anything autoimmune, doing elimination diets (esp cutting out gluten) like you’ve done will make a huge difference. Fingers crossed that you’re on the right track thinking it’s probably something hormonal, and I hope the treatment/surgery that you’re looking into ends up being the answer you seek.
Hugs to you <3
It’s weird – you almost “hope” for something to come back so that it has a clearly defined name and solution. It may be a combination of things, but all the diet eliminations haven’t really had much impact at all (I largely avoid dairy and gluten and soy and MSG etc), but even when I ate more of those things, getting rid of them for an extended period didn’t change much.
Thanks for the support and I’m so glad you managed to find some relief with your own health challenges.
Elisabeth, this sounds… exhausting. Thank you so much for sharing your experience. I am so sorry you have been battling this fatigue for so long, and I am hopeful that the surgical option is THE solution. (And just putting this here just in case, because I feel like in some ways we are so similar and I am always grateful for reassurance: You are fantastic mom, despite this Herculean challenge. You are doing it. You are grinding it out. Your kids are lucky to have you. <3)
Awww. Thanks, Suzanne! I think we are a lot alike…!
This sounds so hard and frustrating, Elisabeth. I had no idea. I really hope that some relief can be found for you, and in the meantime wish you all the rest you need. Keep giving yourself grace. You are doing an amazing job. xx
Thanks, Katie!
Oh, that is so frustrating! To have this level of fatigue and not be able to figure out what’s wrong…. when you first described it I thought for sure it was a thyroid thing, because I had something similar after my son was born (intense fatigue and the “fuzzy brain”) and I now take a thryoid med. But you’ve had your thyroid checked and it’s normal. There must be an answer to this- but trying to figure it all out must be so exhausting (on top of everything else.) This is another good reminder that you have no idea what other people may be going through, even if everything looks great on the outside.
Wishing you all the best, and good luck with the upcoming surgery.
Thanks, Jenny!
I can’t tell you how much I’ve hoped for my thyroid to come back wonky but sadly/thankfully(?), it has always come back normal.
Thanks for the well-wishes. Because of COVID I’m expecting the surgery could be as much as 12 months out, but it feels good to have made a decision and have one thing off my mind!
Oh, Elisabeth! I’m so sorry this is your hard right now. Parenting littles is always a struggle and I’m sorry you have chronic tiredness adding to it. The lack of answers is extra frustrating. I have friends who have been diagnosed with Chronic Fatigue Syndrome–might that be something to bring up to your doc? In any case, I hope you find some answers, rest, and calm.
Thanks, Maya.
Chronic fatigue (and things like fibromyalgia) have definitely come up but they are rather nebulous as well. I guess having a specific label can help, and I’m so appreciative of the support from friends and family!
That is hard Elisabeth. Not only the fatigue, the not knowing, but also putting on the outside mask. That is lot. I only started reading your blog a few months ago but from what I see, you do a lot with your kids and build a lot of memories. Several years ago when the kids were younger we took them on a trip that was exhausting. The logistics were a lot. Packing diapers, stroller and everything to take on the airplane. And the think they talked about the most? The hotel elevator. Yep. The elevator. We had gone to the zoo, to beautiful outdoor parks and visited with family. The elevator. The next year we went to a hotel in our city, rode the elevator, swam in the pool and they talked about that forever.
I have RA. Was diagnosed as a teen (it took 2 years to be diagnosed). My hemoglobin had dropped to 52 and so I needed a blood transfusion. At 15 years old I was napping and so, so tired. I have had anemia ever since. It was chronic. I did shots when it was really low. Took supplements and choked down red meats. About 4 years ago, I had enough and went for a consult to actually decide on doing something about it. I did the IUD option. Although I am older and closer to menopause, so I’m not sure if it’s that or the IUD that worked. My iron is actually in a normal level for the first time in my adult life. I was finding I was still tired but last year I bought a fit bit and tracked my sleep and realized how disrupted it was. I was actually only averaging 6 and a half hours a night. I’ve been working on that and it is getting better.
Sorry for the novel. All that to say that I think you are doing awesome. You are an awesome mom.
P.S. When my son was five (he’s 11 now), he put down on the form that I was 85 years old!
Thanks for your kind words. Yes, I do think/hope the kids will remember all the fun adventures but also know that I had to be authentic and vulnerable and tell them I was tired. Just the other day (when my little guy woke me up in the middle of the night because he was hungry) he said he hadn’t wanted to get me because: “I know you had had a hard day.” While I insulate them from a lot of my health challenges, I also do want them to have an empathetic understanding that I am tired. We have so many similar experiences to your elevator story. I can’t think of them off the top of my head now, but these huge adventures and the kids remembering the free mints in the hotel lobby.
So glad you got your anemia under control. Mine is mostly under control, but it hasn’t solved all the issues. The IUD route was 1.5 years of pure torture (so, so problematic for me) until my body physically expelled the darn thing. It was SUCH a relief…but then also yet another failed attempt at improving things.
Ha. 85. I love how kids perceive age…keeps us adults humble, for sure.
oh so sorry to hear that you’ve been struggling with undiagnosed/unsolvable fatigue for sooo long. Who would guess? I guess the most frustrating part is keep trying new things, hoping it will make it better, and it does not. I cannot imagine what’s like to still function with daily tasks/childcare/work with this condition. I really hope you find a way out one way or the other. I’m sure you’ve heard all kind of suggestions and try most of them already, but if you haven’t, give chinese medicine a try. I’ve had my own hormonal issues during my 20s and had tried everything under the sun until I found my doctor and magically fixed the problem. Never lose hope and keep trying.
Thanks!
Thank you so much for sharing, Elizabeth! How difficult and frustrating. I come from a family of physicians and in talking to them about their work, I’ve come to realize that while modern medicine is wonderful, the human body is so complex that there is a lot that is still mysterious. It’s like it’s own universe of systems and connections with infinite possibilities and variations.
I think it’s wonderful that your post has become such a honest meeting ground for other readers to also share their struggles and experiences. I’ve really valued reading their words.
Thanks for your kind and insightful words. It is so true – we can solve so many incredibly complex challenges with the human body but it is still a mystery in so many ways. Somehow even thinking about it in the larger context is helpful.
“Either way I’ll be exhausted, so I might as well be exhausted with memories.”
This is honestly so inspiring. You deserve a whole sheet of gold stars. You are among the most productive people I know. Knowing it’s not easy (even though you make it look like it is) gives me motivation to carry on when things are hard. Sending hugs your way, friend. I hope that someday you find answers. Either way, you’re amazing!
You know I love gold stars…
Thanks for your kind words, as always, and for so patiently walking alongside me all these years of fatigue (often literally on our 7km-long walks as I rant about how exhausted I am). And for sending funny texts most days…which brighten my world and give me a boost of energy.
I am so sorry you feel this lever of exhaustion end tiredness on a daily basis. Just reading a long is tiresome. And not finding any help when you under so much treatment and do it all right must be beyond frustrating. When I read you story I was reminded of Kate who is also suffering from exhaustion and hypersomnia. Maybe reading her story helps https://www.greatestescapist.com/search/label/hypersomnia and gives new ideas.
Everyone is struggling with some sort of hard and you are right, we should talk more about it. But it is hard. So thankful you found words.
First of all, I am sorry, really sorry. Feeling tired/sleep deprived is one of the worst forms of torture (IMHO), and also, I am so frustrated for you that you’ve been doing everything right and still haven’t found the cause of your fatigue. I also suspect that doctors are often looking in the wrong places or for “textbook symptoms” , which so many people don’t seem to have and therefore are dismissed to figure it out themselves. (but that is just an anecdote of my personal experience).
I really, really hope this procedure is going to bring some change for you, because I can only imagine how exhausting it must be to keep up a front all the time. Honestly though, it’s good to talk about it and for people to know that you’re dealing with something that people cannot easily see, but that burdens you daily.
Thanks, San <3
Elisabeth, I’ve had this post open for days waiting to respond fully. And I know that what I write will still be completely inadequate, and probably clumsy in many ways.
I’m so, so sorry you have been through this, that you have faced so many roadblocks and difficulties just trying to get answers. I don’t experience chronic fatigue the way you do, so I will never, ever understand what you have been through. But I’m sorry for how it’s affected so many areas of your life. From everything I have read, you are an engaged and loving mom, who just needs to rest more than other moms. Your kiddos clearly love you and love to spend time with you (within limits, of course, they ARE kids! :>).
And I hope – SO MUCH – that this planned surgery brings you the relief you need so desperately. No one should have to live like this. Sending so many (virtual) hugs your way. You know I’m here if you just need an ear.
Thanks, Anne <3
Gosh, Elisabeth, this is so difficult! I would have never thought you suffered from this chronic fatigue! You seem to live this big full life (I’m still so amazed at how you’re able to get up 5 well-written blog posts every week! I can barely get my 3 up, and I don’t have any kids or a partner to deal with, haha). It really is true that you don’t know what other people are going through behind the scenes. I hope you are able to finally figure out what is going on and this surgery gives you the relief/answers you need.
Thanks for your kind words, Stephany.
I do a lot in the background to help me keep my head above water (naps, early bedtimes) and then there is a lot I don’t do, too. I think that we have a tendency to look at other people and assume they do everything they do AND do everything we personally do. So, for example, I spend time blogging and taking my kids on adventures, but if I see someone else who is very active with daily exercise I assume they do that and also the things that I do with my time. Not sure I’m articulating that properly…but all that to say there is a lot I simply can’t do because of my health issues.
I am so sorry to hear this and that you have been dealing with chronic fatigue for a decade. I had no idea until I read this post.
I’m sorry that you’ve tried so many things and cannot find the cause, that must be very frustrating.
I hope that the planned surgery can help you and that you can also get answers.
Thanks! It is frustrating, but we definitely all have our “hard.” I’m really hoping the surgery marks a turning point and, at the very least, it will take the mental pressure of having to make such a big decision off my plate if that makes sense? It has been something my medical team has been debating for a while (I’m still very young + have a lot of scar tissue from my C-sections, so it’s higher risk than usual), but it feels good to have made a decision and now move forward to next steps.