My Before and After Story
By Becca Brasfield, PWC

Most people define their lives by big before and after events like graduation, marriage or the birth of a child. My life is defined by before and after I became ill with CFIDS.

Before, I was happily married for 16 years, had a good career in the technology industry, had lots of friends and enjoyed many interests. My husband, Jim, and I took weekend shopping trips, lived in a nice home on five acres in a semirural area with lots of wildlife and enjoyed our many pets. I was intelligent, quick to learn and analyze, easy to get along with and healthy. In short, I was leading a very good life with the man of my dreams.

My illness began in 1997 with a growth on my thyroid. It is now debatable whether the CFIDS caused the growth, or the growth and subsequent treatment (radioactive iodine) triggered the CFIDS. Either way, I went from a 100-mile-per-hour person to a dead stop. I won’t relate what I went through to get a proper diagnosis and then disability—it is still too painful to relive. Writing my story is hard enough.

I spent the first two years sicker than I had ever been in my life and bedridden 90 percent of the time. On top of feeling like I had a really bad case of the flu, I felt as if I had been run over by a truck. I was exhausted to the point of not being able to lift my head off the pillow. I couldn’t think, my brain “shook” all of the time, I couldn’t read, I couldn’t remember things, I was in constant pain and I could barely talk or move. Working was totally out of the question. The mental and emotional confusion, anger, loss and uncertainty of any progress was devastating.

Other people don’t know how to react to my being this sick, except to silently say, “Thank God it isn’t me.” With most illnesses, you find out you have it, doctors offer some kind of “cure,” you live through it and get better or you die. Believe me when I say that dying often seems preferable to living with CFIDS. Friends and family tried to understand, but they want to hear that I am getting better or doing something—anything—to “get over” this. They don’t believe there is nothing that can be done. We didn’t either.

I am so fortunate that Jim has stood by me, taken care of me and continued to love me through all of this. I thought we were close before, but this experience has brought us even closer. We truly know what “for better or worse” means. We had always been partners, but we shifted from being independent in our own way to my being totally dependent on Jim for everything.

Over a period of months, I finally began to feel a little better in spells. I’ve had to relearn how to use a computer, which had been the center of my career for so long. I could sit upright a little longer, talk a little better and read a bit. But I would push myself to do things and end up in worse shape than before, often taking weeks to recover from one day of overactivity. I feel okay and then it’s like someone flips a switch. One minute I can think, the next I’m totally confused. One minute I’m moving, the next I’m exhausted beyond belief. One minute nothing hurts, the next everything hurts.

It was a long time before I finally accepted that I was not going to get well anytime soon and that life as I knew it was over. I was going to have to adjust to this new life, much as I hated it. I had to try to get better or at least live with the symptoms and the limitations my body and mind now placed on my life.

Since the doctors didn’t have the answers, it was up to me to try and find out as much as possible about this illness. I began reading (in small spells) everything I could find about CFIDS. I began a specialized vegetarian diet and taking more than a dozen vitamins and herbal supplements. I began a program of very mild exercise (too much makes me feel much worse). Low-tech pain relievers like heat for muscle pain and cold packs for headaches and throat pain also helped. Jim and I both watched for the signs that I needed to stop and rest instead of pushing on and feeling miserable.

After embarking on this new life with CFIDS, I try to make the best of my limited energy and ability to concentrate, which lasts for only about 25 percent of the day. Out of necessity my world has shrunk to the things I can manage to do in that short time frame. In my new world I communicate with friends and perform tasks that require concentration or physical activity very early in the morning, before the exhaustion sets in.

I make notes of things I must remember to do or what I am to tell someone the next time we talk. I also make notes of characters while listening to books on tape so I can keep up. Short-term memory loss has its advantages though. I can watch movies I’ve seen before and since I don’t remember how they end, it’s always a surprise! We only meet friends for lunch because I can’t be out or up in the afternoon and evening. I can’t plan to be away from home two days in a row and someone, usually Jim, has to drive me most places.

I try to take pleasure in simple things like seeing hummingbirds, playing with my cats, watching the fish in our pond, getting vegetables from the garden or watching rabbits play in the yard. I feel proud of the things I did manage to do today instead of worrying over the ones that I couldn’t. It’s pretty hard to maintain a friendship with someone who can’t communicate with you or meet very often, so e-mail has become a great way for me to stay in touch.

I often remind myself that no matter how bad this seems, things could always be worse. There are a lot of people out there who are also suffering. I am grateful for what I do have and make the most of small victories. But it doesn’t mean I don’t want to be well again. People often say to me, “I don’t know how you do it,” and my reply is, “You have no choice if you want to live.” And I do. I’m not giving up the fight until a cure is found for all of us suffering from this debilitating disease.

It hasn’t been easy, but I’ve managed to write this story a little at a time. If my story helps just one person who doesn’t understand CFIDS gain a little knowledge or helps another PWC realize they’re not alone, then it’s been worth it.