It must seem like a name that could apply to almost every American adult: chronic fatigue, aka always tired. Aren’t most of us working too many hours, called on to care for too many people or causes, and sleeping far too little? Don’t too many of us need caffeine to get going in the morning and a sleep aid before bed at night?
Yes, we are, to a large extent, a nation of people in need of not just rest but an intimate knowledge of how to rest.
But chronic fatigue syndrome, as doctors know it, is something else altogether. Many prefer that it be called myalgic encephalomyletis (ME), but honestly, who can even pronounce that name, let alone have a sense of what it means? (In the medical literature and online, the condition often goes by the acronym ME/CFS.)
The fatigue of chronic fatigue syndrome is something entirely other than the tiredness or exhaustion that most of us feel when we’ve, say, worked too many long days in a row, or had a few nights of poor sleep, or labored in the yard on Saturday and now on Sunday need a long afternoon nap.
The fatigue of CFS feels like someone has drilled holes in the bottoms of your feet and drained out all your blood. It’s feeling, when you wake from twelve hours of sleep (yes, twelve), that you have just finished a long day and need twelve hours more.
The U.S. Centers for Disease Control stipulates three conditions that must be present for a diagnosis of chronic fatigue syndrome:
- Greatly lowered ability to do activities that were usual before the illness. This drop in activity level must last six months or longer.
- Post-exertional malaise, or a worsening of symptoms after physical or mental activity.
- Sleep problems.
Other symptoms include problems with thinking or memory (brain fog) and worsening of symptoms while sitting or standing upright.
Check, check, check, check, and check.
The weird ones to me are the post-exertional malaise and the worsening of symptoms while standing up. I can tell you that there are moments in almost every day when I must lie down. This reminds me of the way hunger would hit with a vengeance when I was pregnant. One minute I’d be fine, and then the next minute I had to eat. Now. And just as with pregnancy hunger I needed a full meal, not a few crackers, with CFS the need to lie down can’t be satisfied by just sitting down. My body has to be horizontal. This symptom, perhaps more than any other, keeps me house bound. There’s no convenient place to lie down on a protest march or a walk through a museum or a hike by the river.
Post-exertional malaise is the other funky one. A long walk on a pleasant day is like a bank withdrawal that puts your account in the red. There’s no way not to pay up, which, in the case of chronic fatigue, means spending the next day in bed.
The worst part of all of this is its effect on my family. I know what it’s like to go through adolescence and into young adulthood with a parent who is often in bed. It’s not right. It gives one a shaky feeling about the world out there, and the world in here. I hope my children know that I would give every possession I have, every possession I will ever have, every past, present, and future reward or pleasure, to change this.
“…like a bank withdrawal,” indeed. And that debt imposes 39.9% interest.
Malaise may hamper ones zeal and exertion, but fortunately love doesn’t require these things. Love can be quiet, and still, and understood as one watches their beloved drift into sleep.