Pulling Myself up by the Bootstraps

By Catherine Lilbit Devine

My name is Catherine Devine. I live in Tucson, Arizona. In 1996 I had a bad bout of flu that lingered throughout the summer. That fall I went through a training academy to become a corrections officer. Then a month after completing that academy, I traded uniforms and began training to become a community service officer for my local Police Department. The aching muscles and weariness, which I attributed to the summer's lingering heat, took a back burner to the grind of learning what I needed to know to keep myself and the community safe. I was so weary that I was struggling to stay awake during classes, but I wrote it off as being due to the training grind.

As the season changed and our short Arizona winter returned, the aches disappeared and my energy returned. I put the bone-jarring fatigue of the past three seasons behind me and focused on field training. But as the weather warmed up, I noticed that my energy levels started to decrease and my joints felt stiff and swollen. In January 1997, I was sent to the hospital after an episode of paralysis on my right side. Numerous tests revealed nothing that would have caused the paralysis. After three months, my body was functioning again and I returned to patrol. However, the fatigue that had seemed to come and go now took up permanent residence. A visit to my family practitioner led to more blood work and pacifications from my doctor. I still didn’t know what was wrong.

In 2001, again in the heat of summer, another episode of muscle fatigue and strokelike symptoms while on duty forced me to switch to desk duty. It also started me on a roller coaster of appointments with neurologists and rheumatologists, who all seemed to want to label my medical problems with whatever was handy at the time. Finally, in November 2001, without a spinal tap or any other specific tests, I was told that I had multiple sclerosis. Two months later, frustrated and more than a bit shell-shocked by the diagnosis, I was fortunate to be assigned to a military doctor who looked over my chart, talked to me about my symptoms, sent me in for yet more blood work and then asked me how much I knew about fibromyalgia and chronic fatigue syndrome.

I wasn't sure if this diagnosis was any better than the multiple sclerosis diagnosis. I was acquainted with a woman who has fibromyalgia, and I knew her medication regime made her fairly incapable of leading a "normal" life. I didn't want that to become my reality.

I struggled to stay on the job for almost two years. Finally, in 2003 I had to give up my job as a community service officer. I took myself off the streets when it became apparent that the fatigue and brain fog were creating a liability for the department, as well as a safety issue for me and everyone else.

It wasn't an easy decision. I was raised never to quit and to believe that illness was something you just pushed through. So I didn’t give up. I adjusted my career expectations, and I adjusted my life. I knew it wasn't financially feasible for me to stop working. I have two sons to get through high school. A medical retirement wouldn't have given me enough to pay utilities, much less enough to live on. I found a job that would accommodate my illness better. I sit at a desk in an air-conditioned space and answer phones. I still work a 40-hour week, but it’s the lowest-stress job I’ve ever had. If I need to rest, I can go out and lay down in my car during the cooler months. There are days that I have to drag myself out of bed and make it to work. But I go.

I had to make other adjustments as well. I, who have always loved the freedom of driving, have been restricted to three hours of driving per day. I have made it a point not to manage my pain with narcotics. At this point, that’s workable. There may come a day when it’s not. My marriage became a casualty of this illness because there was no energy for intercourse or intimacy. I don't do the grocery shopping anymore because it takes me twice as long as it used to take. I only cook on weekends and have learned to make freezer dinners so the boys can "cook" them during the week and have a healthy meal. The boys do the laundry, including ironing and folding. They know when I’m running down and guide me to the couch or bed, tuck a blanket around me and enforce nap time.

It hasn't been a bed of roses trying to explain an invisible illness to family, friends, supervisors, co-workers, strangers. When I try to explain CFIDS, "Everyone gets tired" is a frequent response. "You look healthy enough" is another. I gnash my teeth when someone brings me yet another “surefire cure" that will fix me right up. What I resent is the suggestion—sometimes spoken and sometimes implied—that if I’d just pick myself up by the bootstraps, I’d be fine. Doesn’t anyone recognize that I am picking myself up by my bootstraps, but those bootstraps no longer reach the same place they used to? When a fireman is injured on the job and can no longer work in that profession, but doesn’t give up and finds other work, does anyone say “Just pull yourself up by your bootstraps and you can return to your old job”? When a women develops MS and can no longer do the same tasks in the workplace or at home that she used to do, does anyone suggest that she just needs an attitude adjustment and everything will be fine?

The fact is that I am pulling myself up by the bootstraps every single day. It’s just that my bootstraps won’t take me back to my old life, to my old self. I consider myself lucky to be able to do as much as I do, and know that many CFIDS patients are too ill to work or do many of the things I still enjoy. But if all a particularly ill CFIDS patient can manage is to get up and get a shower and spend an hour a day with her children, and she struggles hard to accomplish that, I wish there would be some recognition that through that effort, she is pulling herself up by her bootstraps.

My life may be different from the one I imagined, but I haven’t given up. I have published a book of poetry. I have a children's picture book in production now and two more picture books waiting to be polished and published. And I created a website outlet called Whispers of the West [ http://www.whisperswest.com/ ] for my books and the jewelry I design. I also do speaking engagements, and at every event I’m approached by someone who also has CFIDS. They ask me how I manage to cope, and I tell them I cope by doing what I can do for as long as I can do it. I like to say that while I have CFIDS, it does not have me. I still ride my horses, I still go out dancing, I still enjoy the outdoors and I still travel. I am just cognizant of the flip side of the coin. A night of dancing, dinner and a movie will take me days to recover from.

I tell people that while CFIDS isn't curable yet, it is something you can live with without giving in to it. I have my days when giving in sounds like a lovely idea. Today is one of those days. I’m so weary I have visions of pulling the covers over my head and sleeping for a week. Yet here I am, an hour left to go on my shift, boys to pick up from judo class and dinner to get through. Yes, indeed, this is exactly why I have bootstraps.