The secret life of a person with Chronic Fatigue Syndrome (CFIDS)

As much as I’d like to tell you who I am, I can’t because I’m too embarrassed. I keep much of my life secret from friends and family because they really wouldn’t understand to what lengths I go to conserve energy, ration it and spend it prudently.

Living with CFIDS (six years now) has made me seriously adjust my priorities and lifestyle. Still, even those people who know me best think I’m lucky to be home all day and not to have to set the alarm. They truly think I’m just tired and that a 15-minute rest will fix me up. Some think that, since I don’t work, my house must be a showplace, since I have so much time for cleaning and polishing. My type-A friends (and to think, I used to be one) are still convinced that if I’d just “suck it up” and make up my mind, I could still accomplish what I always could.

It’s so hard to explain the effects of CFIDS to anyone who doesn’t have it. I find that the only way to help someone understand is to give them examples from my life. It’s only then that they experience the “ah ha!” epiphanies. But so much that would really make them see the impact of CFIDS on my life is too embarrassing to share. I’ll tell you, though, because you’ll understand, and besides, you don’t know me.

It’s true, I don’t set the alarm, but I spend 12 hours sleeping at night and I’m in bed most of the day, too. I’m not always sleeping during the day—not tired, but weak. It’s an immense effort to stand up to brush my teeth.

In fact, I can’t do the normal morning and evening bathroom ritual: you know, wash my face and brush my teeth. I have to do them separately. First I wash my face, then I lie down to rest from the exertion. I even sit while brushing my teeth!

Speaking of personal hygiene, let’s cut right to the chase. For me, taking a shower is an enormous effort. After all, it’s the only time I wash my hair, shave my armpits and legs and pumice my feet. And of course, afterward, it’s the only time I apply lotion to my skin and blow dry and style my hair (which is short so as to require less maintenance). Now to really put this in proper perspective, you need to know that before CFIDS, I did all this daily, whether I needed to or not.

Now, on a day on which I take a shower, it’s the only thing I can plan on doing that day. No showering, then going to the doctor, or showering, then going to church. Oh, no. After I shower, I have to lie down for about an hour before I have the energy to blow dry my hair (and I have a seat in the bathtub to shower sitting down). Then I have to lie down after that because I’m drained of energy.

So how often would you think I go through this exercise? Actually, I write it on my “to do” list in my day planner every day. Somehow it gets transferred to the next day more often than not. Then the next day. On average, I probably shower once every three weeks. Sorry folks, but that’s the ugly truth. If I could do it more often, I would.

Now that I’ve shared what I believe to be the most disgusting part of my secret life, let me tell you about some less disgusting aspects. Regarding my bathroom. I used to be able to scrub it and clean it and vacuum it and wash the floor and polish the cabinets in about an hour. I really love a clean and sparkly bathroom. Now when I clean it, the process goes like this: After lying down to rebuild energy (ha!), I scrub the counter to the left of the sink and wipe off all the things that normally sit there such as lotion, oil, toothpaste, etc. Then I rest for an hour or so. If I regain any energy, I’ll go back and scrub the sink and clean the mirror. Then I rest for an hour or so. If I regain any energy, I’ll go back and scrub the counter to the right of the sink. Beginning to get the picture? Well, it gets uglier.

By this time, I’ve usually exhausted my day’s allotment of energy, so it’s another day when I go back to scrub the toilet bowl. Then I rest. Later, I go back and scrub the whole commode. That usually does it for that day’s energy allotment. It will be another day when I go back to clean the floor.

As you can imagine by now, scrubbing the tub is a horrendous task. So I save that for days when I feel particularly energetic, though they don’t come very often. Of course, it’s not that I use the tub all that much.

So by now you must be wondering how often these simple chores get done. As a former type-A person, I keep a record. After all, I have to be able to prioritize chores so that when I do have energy, I can do the thing (not things) which most needs doing. Here’s the truth: It’s been five weeks since I washed the bathroom floor, seven weeks since I scrubbed the commode, eight weeks since I scoured any part of the sink and—hold on—35 weeks since I scrubbed the bathtub.

Don’t hate me because I’m slovenly. Actually, I’m not. I would do it more often if I could. But this is all I’m able to do. Now do you understand the impact of CFIDS?

Since I prioritize, I try to keep the public areas of the house clean and tidy. I try to keep the first floor (foyer, powder room, living room, dining room, kitchen and library) vacuumed and dusted. Or at least looking as if they’ve been vacuumed and dusted. I end up shutting the door to the library so no one can see it. It’s my office, with my Macintosh, household records, etc.—a mess I only organize at tax time.

You know, it’s one of life’s little mysteries why a commode which is never used has to be scrubbed or it gets “icky” (a technical housekeeping term). So I scrub the powder room, on average, every two weeks. Clean towels and all that. This I consider to be a victory.

You may ask how I can live with myself under these conditions? Why don’t I get a maid? First, I had to lower my standards. Then I had to lower my expectations of myself. It wasn’t easy; it took a long time and, I admit, I was a wee bit depressed to think I couldn’t do what I’d always done. But I got over it. Why? Because if I hadn’t, I would have made myself nuts. Good motivation. Would I like everything to be squeaky clean and polished? Of course! I’ve lost my energy, not my mind! And please disabuse yourself an any notion that I can afford a maid. No matter what maid service costs, it’s too much. I now understand the concept of “fixed income” much better than I had heretofore.

To recap: People without CFIDS don’t understand the accommodations a PWC has to make in order to survive. Some, such as disability insurance companies or the Social Security Administration, would conclude that, since I live alone in my house and am responsible for the housekeeping (notice I didn’t say “do” the housekeeping), I must be sufficiently well and functional to be employed. As if any employer would let me do things with no deadlines, in short segments, with low standards, resting lots in between efforts….

And remember, I’ve had to make comparable accommodations in every aspect of my life. CFIDS affects how I eat, how I shop, how I interact with friends and family, what I do for recreation and how I worship. I have to do a cost-benefit analysis on everything I do, only the cost is not money, it’s energy.

Secrets. I’ve lowered my standards and expectations, even my pride. But I still have my dignity. My friends still consider me ”normal,” but they have no idea.

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