Rachel
Part 1 of 3
Locally, I am referred to as the CFS guru. I finished community college almost 50 years ago, but a human biology class when I was 19 was the closest I ever got to medical school. So, the label doesn’t refer to my formal academic training. It’s really more like the school of hard knocks.
I’ve had CFS longer than the term has existed. On a crisp, sunny day in the autumn of 1978, I suddenly got a terrible headache; the kitchen started to spin, and everything around me looked like it had a green glaze over it. I haven’t felt completely well since then.
Over the past 31 years, I’ve seen about every expert CFS clinician, have participated in numerous research studies, have completed dozens of paper and online surveys, have attended hundreds of CFS support group meeting and conference, have read thousands of pages of books written about CFS and have followed just about every source of online information. I’ve tried a lot of different treatments, raised my hopes when various “breakthroughs” were announced, and expected things would be different after this or that particular media coverage.
For many years I was mostly housebound. My husband, Don, was very supportive of me from the start of my illness, and his income (and employer’s medical insurance) enabled me to focus what little energy I had on starting and running a local support group. We met once a month in a classroom at my church and I mailed a newsletter as often as possible. In those days, before the Internet, most of our members relied on the group as their only means of receiving encouragement and news. We passed a hat, literally, to cover our expenses for postage and occasionally a small ad in the local paper about our group. We relied on printed material from the CFIDS Association to share with libraries and doctors’ offices. A few other volunteers helped take calls from new patients who didn’t know where else to turn.
Technology has changed a lot since those early days. When I first got involved, I connected by phone with other group leaders across the country interested in chronic Epstein Barr virus (CEBV), then CFS or CFIDS. We had “telephone trees” to pass along urgent news, then “fax blasts,” then listservs and email. Now there are so many ways to keep up. Eventually, attendance at our group meetings dwindled and long-time volunteers (including me) needed a break. Occasionally I get calls from newly diagnosed people who find my number on old printed materials still circulating.
My husband passed away 5 years ago and I’ve had to learn to care for myself. I miss him and his comfort on this long journey. My three grown children live across the country; I’ve missed seeing my grandchildren grow up since I can’t travel and they don’t get here as often as I’d like. I have help from neighbors and friends from church who check in regularly. Fortunately, when I “budget” my energy and plan ahead for rare outings, I can manage pretty well. I still drive, but only within close range of my condo and only after morning rush hour ends and before school lets out, when the roads get busy again.
After all the time I spent being “steeped” in CFS activity, a different approach is better for me now. At age 72, I don’t try to stay up-to-date with every single study published or every event happening nationally. For one thing, there is much more going on these days than even 10 years ago, and it’s too much to follow. Second, as much as I love the people I’ve met in the CFS community, balancing my interactions helps me maintain a positive outlook. My faith has become increasingly important to me over the years, and I value the reflective solitude that prayer brings. I find laughter to have as much healing power as any of the medications I take to ease my pain and other symptoms.
I think I’ll watch a funny movie now. With CFS, as many times as I view the titles in my small DVD collection (a gift from my children), something is always new to me!
Rachel is a composite character based on real patients’ stories, allowing us to describe a range of common experiences. Later parts of her story will be posted in the coming weeks. Please visit our site often for additions to this and other characters’ stories. We also regularly publish first-person accounts of living with CFS in our monthly enewsletter, CFIDSLink.