The Constant Tiredness That Comes With Lyme Disease

“I’m just so tired.”

You’ve heard us say it, if you’re still listening, maybe hundreds of times. We say it with furrowed brow, slumped shoulders and shaking head as if, after all these years, we’re still bewildered by this level of fatigue.

It is confounding, after all – this weariness. It doesn’t feel like a part of us – not a true part. It’s an interloper posing as a piece of our original self; an implant, installed into our being, not by an alien race, but by a tiny tick, or a flea, a mosquito – where we get it is actually a matter of debate, even though you may have heard differently. But all we know, is that we are succumbing to the invader.

We can’t help it.

This is not a fatigue that can be soothed by sleep or erased by caffeine. It cannot be swayed by a brisk walk in fresh air. This lassitude is as thick as tar, coating our limbs, drip, drip, dripping into our brains, sucking at our feet, pulling them toward the ground – like we’ve been given a super dose of gravity.

Sometimes, it’s a dead weight that sits on us. Other times, it’s a quivering mass that quakes until our insides tremble and we are muddled; desperate for sleep yet wired for wakefulness. We may be walking, but we consider crawling – no really, we think we may have to crawl to make it around the next corner, or one more block. But we know if we get that close to the ground, we may give up altogether. Cement, dirt, grass – it won’t matter. It will all look like a place of rest to us, more appealing than taking another step.

We have lost seconds, minutes, hours, days, weeks of our lives to sleep, to heads full of fog. And still, we are tired and sleepy. We have fallen asleep on the job, in our kitchens with our heads on the hard, cold countertop, in the middle of conversations, in parking lots, or at the side of the road between errands. But oddly, not in our beds at night. We have only quantity, not quality.

Our heads are giant, dead boulders, and our necks can’t hold them up any longer. Our eyes are not seeing what’s right in front of us anymore. Our ears, through all the incessant ringing – the year-round chorus of spring peepers – they hear only a muffled, far away version of whatever it is you are saying. Sorry. We have slipped away. A people possessed, we have followed, bleary-eyed, our little intruders into the land of nod – like Dorothy in the poppy field except we are forced to remain. There is no Scarecrow or Tin Man to carry us out.

We haven’t done anything to warrant so great an exhaustion. We stand up and feel tired. We sit down with a sigh, as if we’d just completed a long run or a hard day’s work. Of course, we haven’t. Most of us can’t do much, but still, we imagine never getting out of our chair again, just melting into the fabric. Oh, sweet inertia! Sure, someone might sit on us, but at least they won’t ask us to do anything.

“Let’s go for dinner and a movie!” you say. Inside, we cringe. An evening out? After all the hours that came before? After all the hours that have already chipped away at our strength, energy, ability to think or speak or comprehend? Pay close attention, and you’ll notice a slight widening of our eyes, a hesitation in our response. Our feet shift as we wring our hands. We are panicking. You heard that right. Panicking. We finally manage to utter a, “Sorry-we-can’t-make-it,” then we may try honesty, tell you we don’t feel well. Or maybe we’ll manage to summon a concocted excuse from the murky, sludge we keep calling a brain. You in turn, may smile and continue to plead, “C’mon, it’ll be good for you – it’ll cheer you up!”

People keep telling us what will make us feel better as if we haven’t had this disease for four, 10, 20 years – as if we don’t know what will make us feel worse. But, maybe we’ll get lucky, and you’ll remember that we told you we have difficulty concentrating even in silent spaces, or that we have tinnitus that makes the noise of a theater unbearable. Then you’ll see us as we are and offer an easier option, something without crowds or noise, something that doesn’t last too long.

Please don’t misunderstand, we know you mean well, that you care for us. That’s why we feel torn – terrified we’ll be included, terrified we’ll be left out. Sometimes we go because the latter is our biggest fear, other times we stay because we’re bone-weary and don’t care if we’re ever a part of humanity again.

We just want a real timeout, a rest that revives. We nap and nap and nap to no avail. Our nighttime sleep is so full of vivid and odd dreams that we sit up in the morning wondering how we got into our bed, convinced we were out all night. Maybe we were – our minds aren’t right, you know. We check our feet for mud, our bed clothes for twigs or grass.

You think you know what we mean by “tired” or “sleepy.” As a matter-of-fact, that’s what you say, “I know what you mean. I’ve been so sleepy before that I just couldn’t keep my eyes open.”

You, thankfully, cannot hear our mental response, “No, I know what you mean.” We just nod in agreement while we disagree.

We want you to know that when we say, “I am so tired,” you would be wise to translate that as, “I am so sick.”

We can’t do the kinds of days anymore that fill the body with satisfaction and lead to a well-earned, healthy exhaustion that, in turn, produces a fruitful sleep. Our weariness doesn’t come to us, it doesn’t grow as the day wears on. It just is. Those invaders I mentioned require energy, and they think nothing of taking ours.

So, yes, we are tired, but we are tired because we are sick.