I used to hike the Blue Ridge Parkway trails most Saturdays of my life. Now my trail is the path from my back porch to the bird feeder. It is forty-three steps. I know, because I count them. Some days I make it there and back and sit a while. Some days I watch the chickadees from the kitchen window instead. Both kinds of days are all right.

I made this page slowly, in pieces of fifteen or twenty minutes, over about three months last fall, and I still add to it the same way. At the end of each section I've written down when I wrote it, so you can see how it goes. If you have CFS too, you'll understand. If you love someone who does, maybe it will help you see.

My name is Lorraine Fluharty. I'm 42, and I live outside Asheville, North Carolina, with my husband Bill and a very lazy beagle named Tater, who is my role model.

I taught fourth grade for sixteen years. In January of 1994 I caught a flu that went through our whole school. Everyone else got better. I didn't. By spring I couldn't get through a school day without lying down on the floor of the supply closet at lunch. My throat hurt, my glands were swollen, my muscles ached like I'd run a marathon, and I couldn't remember my students' names. I, who had never forgotten a name in my life.

It took a year and a half, four doctors and more blood tests than I can count before a doctor sat down, looked at my whole list, and said, "I think this is chronic fatigue syndrome, and I believe you." I cried in her office. The second part mattered as much as the first. I left teaching in 1996.

written Tuesday morning, 20 minutes, then a nap

I'm not a doctor. This is what I understand, and your own doctor is the one to talk to.

Chronic fatigue syndrome is an illness where a person has severe, disabling exhaustion for six months or more that isn't explained by another illness, doesn't go away with rest, and cuts way down on what they can do. The definition doctors use, from the CDC, also asks for at least four of these other symptoms:

• trouble with memory or concentration (we call it "brain fog")
• sore throat
• tender lymph nodes in the neck or armpits
• muscle pain
• pain in several joints, without swelling or redness
• headaches of a new kind
• sleep that doesn't refresh you
• feeling sick for more than a day after you exert yourself

That last one is the big one for me. If I do too much on Monday, I pay on Wednesday.

There is no single blood test for it. Doctors diagnose it by ruling out other things that can cause the same symptoms, so the testing is important, even when it's tiring. Nobody yet knows what causes it, and there's no cure, but a good doctor can help treat the symptoms, like the sleep problems and the pain. Many people with CFS call it CFIDS, chronic fatigue and immune dysfunction syndrome, because "fatigue" sounds like being a little tired, and this is not that.

It is not laziness. It is not "all in your head." It is not the "yuppie flu" the magazines were laughing about a few years ago. I was never a yuppie. I was a teacher with a Honda.

written over two afternoons, the brain fog was bad

Pacing. This is the most important thing I've learned. I try to stop before I'm tired, not after. I do things in small pieces with rest in between, like writing this page. It feels silly to lie down after unloading the dishwasher. It's less silly than losing three days.

Watching out for good days. On a good day I want to do everything I couldn't do all week. Clean the house, weed the garden, drive to Hendersonville to see my sister. Then I crash. I've learned (mostly) to do a little more on a good day, not a lot more.

Lying down, not just sitting. Rest for me means lying flat, lights low, no TV. Twenty minutes, twice a day, whether I think I need it or not.

Tools I'm not too proud to use. A shower stool. A notebook in my pocket for everything I'll forget. A kitchen timer to remind me to rest. A handicapped parking placard. I cried the first time I used it. Now I just use it.

Saying no. Still working on this one.

A doctor who believes me. If yours doesn't, it's okay to find another. It took me four tries.

Other people who have it. There's a CFS support group that meets in town once a month. I get there about half the time. When I can't go, someone always calls me after to tell me what I missed.

Being careful with miracle cures. If somebody on the Internet is selling a pill or a powder that cures CFS, and wants $89.95 for a month's supply, please talk to your doctor before you spend a nickel. I wasted a lot of hope on those. Hope is precious when you don't have much energy.

written in four pieces over a week in August

I wrote a letter for the people in my life, trying to explain what I couldn't say out loud without getting too tired to finish. A lot of people have printed it and given it to their own families. You're welcome to do the same.
A Letter to the People Who Love Me

• Your doctor. If you think you might have CFS, the first step is a thorough checkup, to rule out other things. Bring a written list of your symptoms and when they started. Brain fog makes it easy to forget things in the office.
• The CFIDS Association of America puts out information and a magazine for patients and doctors. Your library or your doctor's office may be able to help you get in touch.
• A local support group. Ask your doctor, your hospital, or the library. If there isn't one, there are e-mail lists where people with CFS keep each other company. That's how I got through 1995.
• Disability. If you can't work, applying for disability benefits with CFS can be a long road, and many people are turned down the first time. Keep careful records, ask your doctor for help with the paperwork, and don't give up.

written Sunday, lying down, with the laptop Bill borrowed from work