Living With CFIDS
Bicycling within my limits
By Jenny Barnes

Last summer the odometer reading on my bicycle computer finally reached 200 miles. This may seem like an accomplishment, but to me it was just another reminder of how chronic fatigue syndrome (CFS)  and fibromyalgia have limited me. It had taken me about three years  to ride this total distance. Ten years ago when I bicycled almost every day, I was able to ride 100 miles in eight to nine hours and recover enough afterwards to be able to do other activities in that same day.  Of course, being 10 years older  now, I wouldn't expect to be able to ride as fast or recover so quickly. However, I never imagined that there would be a time in my 30s when I'd be unable to exercise beyond 15 to 20 minutes and ride more than three to four miles at one time.

Several years I averaged more than 4,000 miles from February to October, and a couple of times I rode 200 miles in 17 hours. Just about everything I did was associated with bicycling. I laughed about how it seemed that I went to work to rest so I could do the long distance riding again the next weekend. I also enjoyed the camaraderie of riding in bicycle club events that were both local to the Chicago area and held in other states.

My goal was to ride more miles than the previous summer, go to as many events as possible and keep trying to improve my speed and distance each year. Many serious bicyclists I knew were  much older than me, some of them having survived heart attacks and turned to bicycling to improve their health. I knew a 70-year-old woman who rode across the country. At this time of my life, I thought that being in shape, exercising and being outdoors was everything in life.

My son Matthew was born in 1989 and I drastically cut back on my bike riding, giving some balance to my life. In early 1995 I finally decided to buy a new bike that would better fit my needs. I wanted something for both neighborhood riding with my young son and longer distance riding if I had time to do so again. I didn't think my athletic ability and endurance had declined very much yet, so I chose a hybrid bike capable of handling a variety of riding conditions.

I was excited about having a new bike with all the updated components that had recently appeared on the market. Most important to me were the upright handlebars with the gear shifters in the grips. I was glad to switch from the down-turned, drop handlebars on which I spent so much time enduring neck and shoulder pain while trying to enjoy the scenery.

At the time that I bought my bike, I was unaware of the illness lurking in my body ready to devastate my life. Recurring sinus infections had plagued me since February 1995. Just after I bought my new bike, I began to have additional symptoms, including severe seasonal allergies, bronchial asthma, bronchitis, fatigue and a malaise where I just didn't feel like getting out of bed.

In an attempt to jump start my system and mood in mid-July, my husband and I took our bikes to Wisconsin's Elroy-Sparta bicycle trail, built on an abandoned railroad bed famous for its seclusion and tunnels. Even though I rode only 25 miles, a reasonable distance for me, it took everything out of me to finish and ride back to our hotel. I felt like I was riding through water and hitting a wall. Afterwards I experienced a strange, crushing fatigue, achiness and slow recovery that day, different from what I previously experienced after much longer bike rides in previous years.

A few weeks later I developed flu-like symptoms and extreme fatigue that has never gone away.  By December two doctors had diagnosed CFS and fibromyalgia. As I gave up one activity after another and even my job, the new bicycle hung in the garage. But on a warm spring day in 1996, I tried a short ride. I could barely do anything for three days afterwards. This was very depressing and frustrating. A support group suggested that I get rid of the bike so I wouldn't feel compelled to ride it. Friends and family hinted that I may have brought on my fatigue by bicycling too much in my younger years. But bicycling had been so much a part of my life that I just couldn't get rid of the bike, which to me would be an admission that I would never recover.

I kept the bicycle and learned to pace myself. The most that I can ride is two to four miles for not more than 20 minutes. If I go beyond those limits, I have a severe crash in energy. The more crashes I have, the more likely I am to catch colds and develop a multitude of other symptoms. I'm unable to build up any endurance. Of course, now that I have a husband, son and CFS, everything that I do in life is in moderation-a little bit of activity for a little bit of time and then rest.

Sometimes I'm saddened when I see serious bicyclists on the country roads nearby. Instead of being part of that world, I'm passing them in my minivan. However, I've learned to let go of the frustration and be glad that I can stay connected through the little bit of bicycling that I can still do.

When the warm weather arrived for a few days this spring, I went through the ritual of getting my bike and equipment ready for my first ride. Even though I can't ride very much, I can still experience the familiar joys of feeling the wind on my face and hearing the wheels whirr on the pavement. I forget about the illness for a few minutes, especially if the wind is at my back and I'm on a slight downhill. I usually ride my old walking route of several miles so I can still see what's going on in the neighborhood, say hello to the neighbors and escape a bit from everyday worries. I feel calmer and do some of my most creative thinking when biking or walking. Sometimes my son rides with me, giving us an activity we can do together, although he often speeds ahead.

For me, biking is much less painful than walking and I can coast when my legs start to tire. There are restrictions to my riding, such as staying away from uphill grades that would cause overexertion. I don't venture out on windy days and the temperature has to be at least in the 70s, or I'll experience earaches and tight, sore muscles.   Of course, if I'm already experiencing fatigue or have something else planned for the day that will drain my energy, I have to postpone the bike ride. Sometimes I want to ride somewhere else, but loading the bike in the van is too much of an effort for the short distance that I can ride. Instead, I just appreciate that I am able to ride at all. This indicates that I've grown in how I've adapted to my illness.

Each year I buy new bicycling accessories to make my riding more comfortable. Last year I bought extensions for the ends of the handlebars to allow me to place my hands in more positions, which minimizes neck and shoulder pain. I also bought a rearview mirror so that I don't have to strain my neck to look behind me. This year, I bought a lighter weight, aerodynamic helmet that should help prevent headache.

I'll probably never ride 100 miles in one day again, but I'm looking forward to the time when I'm well enough to enjoy a bike ride beyond my immediate neighborhood.

Jenny Barnes lives in Chicago, Ill. She has had CFIDS and fibromyalgia for four years.