34 years ago, I had gone through several somewhat traumatic events. Then I got a cold which only lasted 3 days. I was not an active person, but I had started walking up to 3 miles on weekends. Then on Oct 10, 1987, I was out of bed, feeling fine, decided to drive downtown to shop. I was driving down the interstate, and at 10:25 I felt like a spigot had opened in my body and my energy totally drained out. I continued on, but within 15 minutes knew I’d best go home and rest. Now I had had what I call 24 hour flu every 18 months or so for years. This felt exactly like that. No known cause. But I expected by the next day I’d be back to normal. Didn’t happen, I was worse. And each day worse again. I had almost every symptom linked to CFS: fever, PEM, brain fog, headaches, muscle pain and weakness, night sweats, etc.

I saw my Dr. who ran some labs, and said I had a virus going around. On Thanksgiving day, my very worst, I couldn’t get off the couch without my temp spiking. I couldn’t eat a simple meal I prepared. My morale hit rock bottom. Then the craziest thing, 2 days later, it was like every symptom disappeared, my energy was back. I literally skipped down the sidewalk. The next day, sick again, and the day after, almost as bad as Thanksgiving. I finally accepted this was my life. I shut down where I believed to survive, I had to take care of myself. I shut myself off from other people.

I worked in a hospital lab. So I had contacts, and in Jan my boss referred me to an infectious disease specialist at the local medical center. He had tests run on me, then told me I have something hitting men and women in the 35-55 age bracket in high stress, high responsibility jobs. Now this was 88, and he told me no one gets sicker and no one dies. We know that not to be true today.

After very slow improvement over 5 years, I was at 95%. I was even walking again, up to 6 miles. Then I made the mistake of doing high energy exercising. After only 3 times, I crashed. Full relapse. This one took 3 years to reach that 95% level. And that is where I plateaued. I have not had a relapse, but I frequently flare up. My case is considered mild, but after those first 8 years, when my life was turned upside down, and I wasn’t able to get married, have children, “mild” doesn’t sit well, but there have to be guidelines.

Fortunately, I never had to stop working. So I never had to deal with disability. Time off occasionally, yes. I worked until I retired. After plateauing at 95%, I honestly lived a full life. But CFS never leaves my mind. I’ll do things that may or will set me back, but I always recover back to 95%.

I want my story to give some people hope that there is a life out there. The stories I often read break my heart, and I don’t know what I would have done if I had been that sick. Clearly my case is not one of those. Unless someone fully recovers, permanently, this disease is always there. Occasional flares. That fear what if I relapse again. I go on with life, but it’s always at the back of my mind.