What Happens When the Caretaker Needs Care?

(This blog piece is the third in a series on fibromyalgia.)

Raised in the tradition of "the strong Black woman," it took me 50-odd years to learn how to be gentle with myself. Had I not been floored by fibromyalgia, who knows when, or if ever, I would have learned to listen to and respect the needs of my body.

For 25 years I dealt with chronic insomnia, migraine headaches, muscle spasms, and debilitating exhaustion and depression, harshly criticizing myself for not being hardy enough to cope with the demands of life.

So, what did I do to address the mess that had become my life? What any self-flagellating martyr would do...add more stress!

In 2000, when my former, visually-impaired husband, Chaz, unexpectedly lost his job as the result of the dot-com bust, I volunteered to support us both while he re-tooled. We cut out all the fluff from our budget, I added more classes to my teaching load, and he returned to school to become a massage therapist.

Two years later, at the end of his studies, Chaz developed sciatica, the result of a bulging disk, and discovered he had spinal stenosis. So on top of his visual impairment, he developed a mobility disability. We struggled for four more years on one income, while Chaz, who wanted to avoid surgery, tried many methods of mitigating his back pain, to no avail.

In the meantime, I was functioning on fumes, barely getting through the work week before completely falling apart on the week-end. My therapist, at the time, gently but firmly urged me to take a stress management course offered through my HMO. I resisted, insisting that I did not have the time, nor the energy. Rosemary insisted that I could not afford not to spend the time and energy to learn how to sustain myself.

Thank God/dess for Rosemary who cared about my well-being when I was only caring for Chaz.

I enrolled in an eight-week mindfulness course offered through Kaiser Permanente. The program was based on the book by by John Kabat-Zinn, entitled Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness. (Kabat-Zinn is the founder and former Executive Director of the Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical School. He is also the founder (1979) and former director of its renowned Stress Reduction Clinic and Professor of Medicine emeritus at the University of Massachusetts Medical School.)

Through the program, I was reintroduced to yoga, t'ai chi and meditation, disciplines I had practiced earlier in my life because they were "cool." Now, I practiced them because they were the only methods that helped me to manage the insomnia, pain, depression, and the anxiety I was experiencing as I struggled to keep our marriage emotionally and financially above water.

Soon after taking the mindfulness course, my therapist added a psychiatrist to my medical team. He prescribed an SSRI (Selective Serotonin Reuptake Inhibitors) to help with the depression. Next, he added a tricyclic antidepressant, which when taken at bedtime in dosages lower than those used to treat depression, can help promote restorative sleep in people with fibromyalgia. At that time, I had not yet been diagnosed with fibromyalgia; rather, we were treating symptoms without knowing the cause. Tricyclic antidepressants also can relax painful muscles and heighten the effects of endorphins, the body's natural pain-killing substances.

Finally, the doctor prescribed Gabapentin (Neurontin), a medication originallydesigned to treat epilepsy that was often used to reduce certain types of pain.

Chaz Departs, YaYa Starts (Taking Better Care of Herself)

In June of 2006, Chaz finally submitted to back surgery, and I looked forward to a time of repair, rejuvenation, renewal--for both of our bodies and our marriage. But my optimism was short-lived. In early August, barely able to walk without the assistance of a cane, Chaz announced he was leaving the marriage. And he packed and was gone within a week!

There was no looking back. Chaz did not want to seek couple's counseling nor pastoral counseling, he did not want a trial separation. He no longer wanted to be married. He offered this frail explanation: "I can hardly take care of myself much less you!"

I was floored. I was flummoxed. I was flabbergasted! And, not by my own volition, I was suddenly refocused. "Now," my wonderfully maternal therapist told me, "I want you to take all the love, care, and compassion that you have devoted to Chaz all these years, and devote it to your own well-being."

Doing so has not been as easy as swallowing a handful of pills, but it has been the gift of my chronic condition. In the ensuing year, I discovered that all the medications the doctor had prescribed were used to treat the symptoms of fibromyalgia, an ailment that no one in the medical profession had mentioned as a possible cause of all of my symptoms.

In the past two years, I have learned an important lesson about caring for my illness: no one is going to advocate for my well-being better than me. I had to insist that my primary care doctor look at my medical records over the past two decades and see the connection between my symptoms. In truth, I had to educate him about fibromyalgia!

Today, I know I need 8-10 hours of sleep in order to function effectively so I guard my sleep time with a vengeance. Along with drugs, yoga, and meditation, and meting out my energy very carefully, I stretch three to five times a day, walk regularly, participate in water aerobics (irregularly), receive massages--when I can afford them, sit in the sun daily, and enjoy the loving touch of a caring partner. (More about that next week.)