My Change of Life Story

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In 1985, I was at an age when my women friends were talking about the "change of life." So when an unexpected and unwelcome change of life intruded upon my life, it came as a total surprise. It happened on a sunny day in October when my husband and I went to a football game in Madison. I had been anticipating the day with relish because returning to my alma mater, the University of Wisconsin, is always fun.

On that October morning, I woke up feeling a little bit strange but not so ill that I would miss a wonderful day at Camp Randall Stadium with my husband and friends. As the day progressed, so did my decline into illness, and by the time the game was over, I could barely stand and walk. I don't know how I got out of the stadium and over to the car. I remember feeling like I was beside myself, forcing myself to take the next step. When we were in the restaurant for dinner—a very difficult experience—1 had to hang onto the table to keep from falling to the floor. My constant thought that day was, "I hope I don't have encephalitis," since it felt like I had been struck in the brain.

And so began my new changed life. and a change of life it was. I had to reinvent myself as a debilitated person, but I was still "me," the person with the same likes and dislikes, hopes and desires.

I was one of the "lucky" ones because my friends and family didn't desert me, and even though I felt pretty awful all the time, I could often summon the effort to do much of what I did before, except exercise (my favorite pastime). Reading, knitting, eating out with friends and becoming a volunteer in the Wisconsin ME/CFS Association were my early activities. These still are my usual activities. Of course, I met with the usual disbelief and lack of an approach to CFS treatment in all but one of the doctors I knew at that time. However, I was able to move beyond these physicians and find others who were marvelously sympathetic and helpful.

For years when I was with active people (and was trying to keep up), I would assess how much walking was required to get from the spot where we parked the car to a restaurant, arts event or movie. Often, I needed to be dropped off in front since my walking limit was one or two blocks.

Shopping was, and still is, particularly difficult, and there is no challenge like trying to pull off Christmas with all the trimmings. It takes careful planning to go to the stores (not too far into the mall) to get one or two presents at a time. Christmas cookies were dispensed with because baking them took too much out of me. Catalogs became my best source for purchases. I think that by now we have received every catalog in print. At one point our mailbox became so stuffed with catalogs that I made a list

and started calling the catalog companies to have our name removed from their list. In that first name-removal effort, I culled over 70 catalogs!

However, as a result of having to parcel out my time into little bits to conserve energy, I have been able to accomplish a surprising amount. Christmas this last year went very smoothly with the use of the catalogs and only a few trips to the stores. I even baked some cookies, but then my life has returned to some semblance of normalcy since I no longer feel sick, and I have improved energy.

A do-it-yourselfer, as I used to be, I am now converted to a "let-George-do-it" person. I am fortunate to be able to afford house-cleaning help. And gardening, a favorite activity, has been very limited since CFS struck. Each spring, I put in the basic geraniums, and that's that. We also have found an off-hours rock musician to garden for us when the weeds threaten to smother the other plantings. During the past ten years, I have become more spiritual. I fully

appreciate the days when I am feeling well, and I find myself reveling in the sights and sound of nature. The smell of the fresh grass and trees after a rain is a marvel; the riot of color provided by summer flowers is a miracle. The wild animals who appear in our yard delight and amaze me. How can they make it in the wild when I am fully challenged to survive in a heated and air conditioned house and with grocery stores to buy my food? Best of all, my beautiful friends and family members are very dear to me and deeply appreciated. I can "thank" chronic fatigue syndrome for opening my eyes more fully to the really important things in this short life.

In my quest for better health, I have met some of the most interesting people I have ever known: my "fellow travelers" in the Wisconsin ME/CFS Association; other people with CFS around the country; the special, caring health care providers who are willing to treat CFS patients; and those who are committed to finding answers to the CFS puzzle through research.

My change of life has certainly been a profound experience. I am a different person from the one ten years ago who set off to Madison to enjoy an afternoon at the football game.

 

Genie Gengler