The truth about Fatigue

There’s been many times in class where students have turned to me and sighed. “I’m so tired.”

As someone who fights ME/CFS every day, I smile and nod but am hesitant to agree. It’s in these moments I realize how little I share with those around me. I don’t want to join the “I only got three hours of sleep” race because I’d lose. I sleep. A lot. And quite honestly, I don’t have the energy to compete.

Part of my reasons behind writing is to inform. I refer to “fatigue” quite a bit in my daily life, but not everyone knows what that means. If I could explain it in mere words I would, but it’s never been that simple. So here are a few snapshots from the past semester to show what chronic fatigue is really like. Thank goodness this isn’t every day, but at the same time, this is also just a small picture of the fatigue. There are many more moments I could have written. That being said, this is the ugly truth of an illness so called “Chronic Fatigue Syndrome.”

***

An exam and a black ink joy pen sits before me, my arms hanging limply at my sides. I vaguely hear my professor call the exam to start, but my arms won’t follow everyone else’s lead. A wave of panic rushes through me—what was I thinking coming to class? I’d missed all my other classes that morning. Did I come to this exam just to fail? I take a deep breath and coax myself through the steps. Pick up arm. Grab pen. Pick up pen. Write name on exam. Easy enough, right? But still my arm won’t move. I assess the situation—I can go home sick, but the exam is already out. And what would I say, that I couldn’t pick up my pen? And in order to leave I’d have to pick up my pen anyways. And put it in my backpack. And stand up. And pick up the backpack. And walk–no, no, that’s too much. So I try again and again until finally, my name is on the exam. I check the clock and see five minutes has passed. I have only accomplished my name, but my arm is crying out for relief, and I give in, resting for one minute longer, all the while praying for a miracle.

***

I’m stuck half way up the stairs on the way to class. I just stand there, immobile, giving myself a break after ten hard steps. I hear the sickening sound of the door opening, and as I hear steps ascending, I force myself to keep climbing. It’s best to avoid any awkward interactions. I’m thankful that my legs follow my brain’s command, and I quickly finish the flight of stairs, arriving to my class completely worn out and out of breath.

***

I’m holding an apple. The juice is running down my hands, but I don’t get a napkin. I don’t even take a bite. I just stare at the apple, wishing I had the strength to pick up my arm and take a bite. Pick up my arm, take a bite, chew, and swallow. Who knew cutting the apple was the easy part? Inside I laugh at how ridiculous my life has become, but my face stays a straight line. Smiling and talking take energy as well, and so I keep these thoughts to share for later. Only when later comes, these thoughts aren’t seen as funny from friends but worrisome. So I keep them indefinitely to myself.

***

I’m in the middle of a deep conversation with a good friend. I go to sit up on the couch so I can face her, but my head starts to spin and I fall back down. Not phased in the least, I keep talking, until half way through a sentence I fall asleep and wake up mumbling thoughts that don’t fully connect. I had a purpose to the conversation, it had something to do with my illness, but I can’t for the life of me remember what we’re talking about.

***

I’m sitting motionless on the kitchen floor, an empty garbage bag in my hands. “It’s not that hard!” my brain screams, but my body tells a different story. I can’t lift my arms. My roommates make dinner around me, and I wish I had the strength to ask for help. But I don’t, and so I wait a few long minutes until I have enough strength to place the bag in the trash can and make my way to the living room where I collapse on the couch for the rest of the night. Dinner can wait. I didn’t have the energy to make food anyways.

***

A few fingers are freed after an afternoon of fatigue, and I tap them up and down on the couch, a gentle reminder of what “normal” feels like. Tip tap tip tap.

***

“Lyndi, are you okay?” A friend had asked me a question a minute ago, but I still can’t respond. She looks back to her phone, and it’s at least another minute before I force myself to respond. I mumble “words,” hoping she understands. Even though it’s the only word I can get out, I hope she knows that by this I mean that I want to reply but words are hard. That words are physically too much effort at the moment. That I have words in my head—so much I want to say, so much trapped inside I wish I could voice—but that speaking is too much of a challenge. She continues on her phone, and I’m stuck in a feeling of claustrophobia of being stuck in the lonely confines of a body that can’t move.

***

I’m lying on the ground–somehow I ended up here instead of the couch–staring at paintings of mountains on the wall. My heart breaks more and more with every passing moment. I’m unable to stop the fatigue, I’m unable to stop the slow roll of tears at the impossibility of it all, and I’m unable to stop the sleep that overcomes my body without permission or warning. I’m unable to stop my chronic illness from taking control of my life.

***

This is what the fatigue I write about looks like on a personal level. Most of these snippets were written last semester when I was still searching for a diagnosis and a treatment plan. The past few months have been good. Since my diagnosis I’ve minimized activity, designated at least a few hours every day for naps and rests, and have avoided medication and dairy (two of my triggers). I’ve only had a few setbacks, and I’m learning to navigate all the problems that come with being chronically ill.

That being said, I’d still be lying if I said I was cured. If I wasn’t exhausted. I’ve become my own advocate, setting limits and making myself follow them. But a few too many days of freedom and I always come back to over exerting myself, thinking I’m healthy again, and eventually landing back in these places of fatigue.

Places where I crawl up the stairs because I tried to take a bike ride. Sleeping ten hour nights and still waking exhausted and in pain because I tried to do a single pull up at the playground while babysitting. Brain fog, memory problems, pain, and a week long headache for no reason at all.

And so because of this, I remind myself every so often of the six months of debilitating fatigue I faced last winter. The intense life-changing fatigue, of which I’m still seeing remnants of today. And with this in mind, I pace. I pace what I do. I buffer my days with long nights and multiple naps. I remind myself of the post exertion malaise sure to follow any mental or physical activity. I slow myself down and I give myself space to be human. I give myself space to be tired. Even if I won’t ever admit that I’m always tired.

I don’t even use the phrase “tired” anymore. It’s lost all meaning. I’ve forgotten what it means to be normally tired. Did I ever know? And so I keep this level of fatigue to myself, as others go on and on about how tired they are.

What it all comes down to is this: it’s okay to say “I’m tired.” I’m actually glad the phrase means something different to you. Just know our definitions of “tired” may not line up. And that’s perfectly okay.