Internet Plugged In - Internet use by chronic fatigue syndrome patient - Brief Article

Accent on Living, Spring, 2000 by Jennie Floyd

Making It Work For You

When I was diagnosed with chronic fatigue immune dysfunction syndrome (CEIDS) last fall, I started down a long, lonely road. Facing what turned into nine months of disability leave, with no family within 3000 miles and a Silicon Valley workaholic husband whose idea of coming home early is 8:00 at night, I wasn't sure where to turn for advice, for companionship, or for information about an illness I could barely pronounce in one breath.

Fortunately, I'm wired. We live in an area where home local area networks (LANs) are common. I have a friend who has a separate computer to file her recipes in the kitchen. My husband and I are no exception -- we live in a three-bedroom house with two inhabitants and four computers between us, not including the laptops our employers graciously let us use at our home. So the first thing I did when I got home from the doctor after I got my diagnosis, other than cry and attempt to dye my hair red only to have it disastrously turn purple (but that's another story), was to get on the Internet and search.

What I found was a wealth of information beyond what I could have imagined. There is a home page for CFIDS, with links to multiple related pages around the world, I found a whole community of support groups, one located right in my own neighborhood. There were tips on treatment options, possible causes, and how to get disability benefits (hint: hire a lawyer). As time went on, I was able to help my doctor with diagnosing the multiple problems that turned out to be causing my fatigue and pain, and to recommend drug therapies that worked. Since my illness had left me feeling totally powerless in most areas of my life, it was empowering to be able to know so much about what was wrong with me and how I might be able to fix it.

But perhaps even more helpful was the way I was able to perform most of my daily tasks using the Internet. Since I had very little energy for housework and errands, one of the first things I did was determine how I could get help. I used the Internet to find a maid, to locate an errand express service, and best of all, to shop for groceries. Every week when the grocery truck pulled up, I wanted to kiss the delivery man, but settled for a $5 tip instead. This service was the single greatest load off my body -- to never have to stand in line at Safeway again! Cooking is a pleasure for me even while I am sick, and since I discovered I have multiple food allergies and can't eat out much, I need to cook most meals at home.

Hobbies were another area of my life that were enhanced by the Internet. While I was working full-time, I was not able to pursue my most avid passions, music and reading, with any regularity. But suddenly I had lots of time, if not much energy. I discovered two favorite sites -- Amazon.com and SheetMusic.com. Amazon is well known for being a source of almost any book imaginable, including many books on chronic illness and OFIDS, which I devoured during my long days on the couch. But SheetMusic. was an unexpected pleasure. I was able to locate a wide selection of jazz and Broadway tunes, in addition to current pop music, and over the course of the winter learned a whole repertoire of standards (I'm an amateur singer). With the help of another site, CDNow, I expanded my jazz library as well so I could listen to the songs before I tried to sing them.

Staying at home was getting expensive! I discovered that most mail order catalogs now have sites on the Web, and even ordered some sexy new pajamas for my convalescence. I did all my Christmas shopping on line through a site that delivered California wine and fruit to my relatives down South (in Alabama, not San Diego). Since I have to take an impressive quantity of herbs and supplements every day as part of my treatment, which can get pretty expensive, I searched the Web for the best bargains on these, and now take advantage of the many bargains whenever I can from sites like Drugstore.com. They also stock bubble bath and bath salts, great therapy for my fibromyalgia pain.

But the best part of the Web is that I was able to get free e-mail! I had an account through my employer, but since I wasn't working during all this time, I didn't have access to it, so I took Yahoo up on their offer and got a free account. Now everyone in my family has e-mail, and I have about 60 friends and relatives around the world that I correspond with on a regular basis. Since I didn't really have the energy to visit much, and since long distance phone calls got somewhat expensive, this was a life saver in terms of keeping my spirits up. And when I got tired of being alone all day, I used the Net to research breeds and locate my pug puppy, Pasha, who joined our family after I had been at home for three months. The Web was a wealth of information on house training, where to purchase pet supplies, and on locating dog parks in our area, which we visited weekly for short walks while I recovered.

Now that I'm back at work part-time and recovering, I'm grateful for the many ways the Internet came to my rescue. In the past I had always felt that technology was dehumanizing, but I learned that the Web could keep me plugged into the human race even when I could barely leave the house.