The Power of P.R.I.D.E.

By Lynn Humphreys, M.A., Ed

Editor’s Note:  Lynn Humphreys, a CFIDS and fibromyalgia patient from California, is a graduate of the CFIDS/Fibromyalgia Self-Help Course. Before retiring, she worked as a teacher and marketing services coordinator in high-tech companies, as well as being a homemaker.

Two years ago, after struggling with CFIDS/FM for six years, I finally realized no superperson in a red cape was going to appear to rescue me. After much reflection and many false starts, I built a life that works for me

Initial Efforts to Cope

The odyssey into chronic illness began in February of 1994. I was healthy, athletic, had a full-time job, and my children were on their own. Single for five years, I was enjoying life. A sudden bout with bursitis in a hip soon changed everything. Migrating leg pain, aching feet, muscle cramps, neurological symptoms and brain fog followed, as did the frustration of being referred from doctor to doctor.

Passing off unexplained symptoms to age and boredom, I moved from the suburbs to San Francisco. I alternately continued to lead a normal life, then endure flares without witness. Eventually, I retreated into the comfort of my home, despite the advantages of living in a world-class city.

Considering myself a trooper, I didn’t like bothering others with my illness. On good days, I thought maybe people were right -- I wasn’t ill. Increasingly, I hid fatigue and nausea, dulled the pain with Ultram, then suffered consequences for days afterward, only to gear up for the next active encounter and lonely crash. It never occurred to me that I was doing damage, possibly delaying recovery.

The pain, stiffness, cramps, activity intolerance and cognitive problems were getting worse. For awhile, I couldn’t remember my phone number. I became aware that my judgment was flawed; I made decisions quickly, choosing what brought the least physical pain or mental stress. It was then that I was forced to re-evaluate my circumstances, to question assumptions and expectations and come to terms with a condition that only I could influence.

Taking Control

After a hard look at my situation, I realized that living in easier surroundings would actually allow me to conserve energy and be less house-bound. I moved back to the suburbs to be near my daughter.

I found a support group and gained new friends who had CFIDS/FM, people like me who didn’t mind sharing trials, treatments and triumphs, and who understood the value of serenity and patience. Through the group, I found a doctor and other resource people. I also saw that others with serious health challenges could live a full life by respecting their bodies and feelings, by creating reasonable new goals, and adhering to a few guidelines. Dr. Bruce Campbell’s extremely helpful CFIDS/Fibromyalgia Self-Help course gave me additional ways to actively improve my life.

But I still found staying within my energy envelope was haphazard at best, until I devised a reminder. Writing down the five most important things I could do to make life better --Pacing, Resting regularly, keeping myself and others Informed, Delegating and making time for pure Enjoyment -- I formed the acronym P.R.I.D.E. and stuck it on my mirror, a daily reminder that I could live my life so that health and self-esteem were not sacrificed.

P. R. I. D. E.

Even though I’m not perfect and fall off the wagon frequently, I’m always grateful to have this wagon to climb back onto, and it carries me down the road:

Pacing: Pacing has become rote now, because the miserable physical consequences of overdoing, like Pavlov’s bell, have trained me well. Each day I check my task priority list and order the day according to how much energy each task requires, leaving plenty of blank, or spill-over, time. If there are several things to accomplish, I start with the most important one first as insurance that it will get done. After dressing and before activities, I take time to sit and relax, read the newspaper, watch Ms. Stewart tour a pottery factory, or have a cup of tea. Then I work on projects in small bites, taking lots of rest breaks. If I need to put off something, I do, and re-order my week without guilt. A kitchen timer reminds me to shift activities often, not to overdo sitting or standing, to alternate between sedentary and active tasks such as working on taxes and watering plants. No longer comparing my efficiency with that of a well person, I devised my own work ethic. As I became more comfortable with altered routine, I wrote down the things I accomplished, and was pleasantly surprised at the many things I did do, despite being ill. It took me years, but I finished the novel I began twenty years ago, something I probably would not have done without having CFIDS/FM.

Rest: Rest takes the form of taking mental and physical breaks from any activity. For me, mornings require more rest. The early afternoon hours are the most productive. Lying down for 60 minutes around 4:30 pm offers my body relief from gravity and energizes my evenings. Getting to bed at 9 pm allows time to get sleepy by reading or listening to soft music such as Steven Halpern’s music CDs for sound healing. I’ve learned that scheduling rest hours (or even days) before and after heavy activities is mandatory. I no longer push through bad days, but take as much rest as necessary. I’ve come to depend on the obvious benefits of more energy and less pain in the days that follow.

Informing: Informing myself and others includes four areas: listening to my body, subscriptions and books, informing friends and family, gathering and giving information through media.

I now pay more attention to what my body is telling me, using Bruce Campbell’s journaling techniques until I see fixable patterns, such as weather-related or activity-related flares.

I subscribe to journals such as the CFIDS Chronicle from the CFIDS Association of America and Arthritis Today from Arthritis Foundation for fibromyalgia. I find books by empathetic doctors who have CFIDS/FM themselves, very helpful. Two of my favorites are Living with M.E. by Dr. Charles Shepherd, and Dr. Devin Starlanyl’s Fibromyalgia and Chronic Myofascial Pain Syndrome. I also invested in the reference book Prescription for Nutritional Healing, by Phyllis Balch, CNC, and James Balch, M.D., which recommends vitamins, minerals, herbs and supplements plus other helpful tips for dealing with health problems.

I no longer wait for people to bring up the subject and now talk to friends and family matter-of-factly about how this condition affects me and how they can help, such as scheduling short activities in the middle of the day, reminding me not to overdo, finding restaurants with soft chairs, or remembering that wine no longer agrees with me. I also stress that overprotection isolates and demeans me; I will gratefully accept or decline an invitation according to my needs at the time.

In the public domain, I occasionally do some internet surfing, staying with reliable sources such as National Library of Medicine, New England Journal of Medicine, and Medline (accessed through "webMD.com"). The books and journals listed above also list internet and other resources for information and products. Occasionally, I reply to relevant news media stories to encourage their interest in following up.

Delegating: Delegating is difficult when living alone, and it gets expensive to pay people to do everything. Often, people don’t know how to help. Since I enjoy helping people, I realized that to deny someone that opportunity is not right, either. Since I often can’t remember when asked off-hand what would be helpful, I make a list as items occur to me. I’ve employed students and neighborhood teens for digging, moving furniture and planting. Finally, having been a committee member, chairperson and officer throughout life, I am mindful now not to volunteer or be flattered into elected service. I hope to get back to that form of participation again one day, but for now, saying “No” tactfully is a form of delegating.

Enjoyment: Enjoyment and pleasure are crucial to anyone’s health. For those of us who are time-challenged by chronic illness, it’s easy to let routine or “catch up” activities dominate, forgetting to schedule pure pleasure. Yet diversion from routine, pain and solitude in the form of joy, laughter and companionship has lasting benefits. I’ve found that lunch or dinner out, a drive to the coast, a phone call to someone I haven’t heard from recently, gardening, or buying a new music CD all make this condition more bearable for me. My daughter makes a point of bringing my grandbabies over to visit when I am not well enough to visit or to baby sit. Also, she asks me out to a movie (albeit a short, quiet one) on occasion. Often, getting out of my home when I feel physically awful and being with people, even if it is sitting in a coffee shop for awhile, makes me feel better.

Conclusion

With time, I’ve discovered by trial and error that I can and deserve to have reasonable control over an ever-present illness and, some of the time at least, I can choose what its effects will be. Now, the positive reward of better days and the hope of recovery keep me on track, honoring my needs, rather than following someone else’s drummer. I know there are still things I can’t do, but life is a banquet; I can’t eat it all, anyway. However, by choosing an appropriate lifestyle, reminding myself to have P.R.I.D.E. in my life, I can accomplish many goals.