Parsing Chronic Fatigue: Am I tired or just tired?

Well, I’ve been on the new meds for a little less than a week and so far, so good. My energy levels and clarity are slowly improving. It’s funny, though; I now find myself parsing tired.

Here’s what I mean, and it will likely seem as familiar to those with chronic illness as it will opaque to those without it. (If you find yourself in the “opaquey” category, count your blessings.) Now that I’m coming to experience some real relief from the symptoms of the infection, I’m starting to experience something I haven’t known in years: what the human body is actually supposed to feel like. That takes some getting used to! Learning that it’s okay to be tired is part of that.

I have spent the better part of a decade now fighting deep, chronic fatigue. Most every day could be described by some use of the word “exhausted”. Some days were less bad than others. In fact, a number were even quite decent, though few, if any, were what most people would call “normal”. At their worst, I sometimes wondered if I might actually be dying. Recently, Kami and I shared a story with Inklings III and the description of the main character’s parents, initially written several years ago, was based on my own “worst-of-times” experience:

I do not remember my parents ever talking much, but I do remember the weariness. The absolute, marrow-sucking weariness that I saw in their eyes from the moment I was first old enough to recognize it. They dragged themselves to bed each night with it consuming them, and they awoke the next morning no better rested than before. I have always wondered who they really were, if you could strip away all of the pain and exhaustion that had accumulated behind their eyes. I think they would have been kind if life had given them the chance to be, but I will never truly know. When I spoke to them, even on the day they sent my sister Meejin away, I never saw beneath that dull glint to a real person below.

Compared to some illnesses (like, say, cancer) it doesn’t seem to be that dramatic. I wasn’t debilitated with excruciating pain or given three months to live. That is what is uniquely evil about chronic fatigue, I think. The burden may be comparatively “light” but it is still very heavy. It never goes away. You lay down with it to sleep in desperation, and you wake up to the same burden, day after day.

If you’re lucky. Because many of the same conditions that cause chronic fatigue also disrupt sleep. For me it was back and joint pain. I would lay there and toss and turn. About the time I would begin to seriously doze, the pain would wake me and I would shift positions, only to be reawakened an hour or so later. I’ve been entire months without a really good night’s sleep. When that happens, sleep, the one thing you need most desperately to help you, only piles the weight higher and deeper.

Worse, unlike a major disease like cancer, the world around you doesn’t acknowledge or understand this kind of fatigue. The demands to perform don’t decrease. Even at my worst, I still had to deliver–care for my family (including a chronically ill wife) and somehow succeed at work. In all of those places, I’m expected to be normal and happy. After all, my toddler needs me as much as my boss. Neither can understand what’s happening. (Nor should they! It is my role to bear their burdens, not to be one myself.) There were days when sheer dedication to duty and the Grace of God were all that kept me going.

Frankly, I’m lucky I still have friends. When you’re that tired for that long and the exhaustion is so deep it’s painful, it’s hard to be winsome. It’s difficult to even think clearly or to grant anyone any slack, least of all yourself. My own particular version of this psychosis told me that “speaking the truth” in “tough love” was how I could show loyalty to others. You can imagine how that might go over and the martyrs complex I could self-generate when I discovered it wasn’t appreciated! Hmph. I didn’t even like myself–it’s easy to understand how others might not like me too.

Of course, most days were somewhere in the middle, but all-in-all, it was very easy to forget what “healthy tired” means, the kind of natural tired you feel at the end of a long, productive day or a hard workout.

That leaves me to wonder, even now, what I’m actually feeling here. It’s now 9:30 pm. Today, I’ve made breakfast, corresponded with students, written a bit, run to a friend’s apartment to help clean up for a move (it fell to me to vacuum), come back for more writing/work, dinner, and put the baby to bed. Is that a “full” day? Should I feel justified in the vague weariness clinging to my eyelids? After all, I didn’t workout today or do much physical labor. Could it be I’m lazy? Could it be the infection coming back?

It boggles the mind how so much uncertainty could be bred of something so simple as being a little tired. I do know I’m blessed in this, however: I’m starting to feel good enough again to worry about the difference. And that is an encouraging thought. 😊