A Nightmarish Illness

By Mary Jedlicka Humston © 2012

Rising from bed, I shuffled toward the bathroom, my eyes quickly adjusting to the comforting darkness of our bedroom; my hands spidering out, touching a dresser, a chair, a wall. 

Suddenly, a heavy shape knocked me to the floor. I lay in a crumpled heap while powerful hands pummeled me; a soundless scream echoing nowhere. I tried to escape, but the thing pinned me down. My strength slipped away like a wounded animal after a lost battle. 

In that crushing surrender, I awoke. Yet again, I’d fallen prey to that nightmare. Soothed by my husband’s warm, solid presence, I snuggled up to him and calmed my heart and ragged breathing. Eventually, I fell asleep, the lingering images scattering.

In the placid light of day, I tried to discern what this nightmare meant. No matter how hard I pondered, it remained a mystery. I dreaded the middle of the night.

One day the answer appeared with the same quickness and surprise as the nighttime attacker. The culprit,

though it sounded ludicrous, was an illness.

It began in my sister-in-law’s bright, sunny kitchen where we celebrated a family birthday. While ensconced in this warm environment, a wall of fatigue came tumbling down, crushing me. One minute, I was fine, dealing with a simple cold; the next, exhaustion beyond description enveloped me.

When I realized the nightmare had begun around this same time, it finally made sense.

My bedroom resembled my sister-in-law’s kitchen where nothing bad could possibly happen. Yet, while in the bosom of comfort and safety, a monster virus attacked, beating me down, confining me to bed and rendering me helpless.

Visits to my doctor in those early weeks eliminated several diseases and eventually established the diagnosis of post viral fatigue syndrome. Collapsing into a black, nebulous land, I awoke just as tired as I’d been before I’d slept, spending endless hours in bed, losing blocks of time claimed by this cruel invader.

That initial debilitating fatigue lasted for many weeks. My firefighter husband, already a hands-on father, took on the primary parenting of our three children (six, eight and ten years old) as well as the majority of household tasks. I helped when I could, but mostly I slept. Slowly, and oh so gradually, the fatigue leveled out to where I could function fairly well with a one to three hour afternoon nap. If I didn’t rest daily, mind-numbing exhaustion, fuzzy-headed thinking and headaches awaited.

Being a mother-at-home since our first child’s birth, I didn’t know how I’d have handled this with an outside-the-home job. As it was, I scaled way back on my volunteering obligations, only taking on a few activities that didn’t involve large blocks of time or tax my limited energy.

Prayer, hope and a positive attitude were crucial keys in battling this chronic illness. I leaned on God to help me through the tough times. Uppermost was learning to appreciate what I could do and being grateful the illness wasn’t worse. For the next several years, I coped in this manner: napping to restore my energy, limiting my time to activities devoted to my family, friends and home and also volunteering for a few, select causes that made me feel like a contributing member to society.

How I dealt with that illness brings me back to that nightmare. Knowing its origin helped me devise a plan to retaliate, be brave and beat back the intruder. When it returned, I was ready. I fought with strength and anger, punching, hard, hard, hard, until just as swiftly as it came, it left. I had won. That nightmare never returned. 

A miracle occurred around 11 years after my illness began and that nightmare ended. My physical therapist recommended a doctor who was well-versed in fibromyalgia, chronic fatigue syndrome and other similar illnesses. I hate to admit it, but I didn’t expect much from her, having been disappointed when other medicines, therapies and diet changes didn’t produce the proclaimed results. I had accepted that I would deal with this illness the rest of my life and had developed adequate coping strategies. I was still exhausted, needed naps and limited my activities, but I was used to it. So, imagine my surprise when this doctor re-diagnosed me with myofascial pain syndrome and prescribed medication for better sleeping. It took around three months to adjust to it, but it worked.

I’ve had a wonderful quality of life ever since that doctor’s advice 11 years ago. (Yes, it’s been 22 years since illness struck in that sunny kitchen). I’m not cured, but I don’t need the daily naps. I continue to be greedy with my energy and time. I am grateful how medication, more exercise and some habit changes made such a difference.

Just like I had to break down the source of that recurring nightmare, I had to break down the strategies I needed to manage that debilitating illness. And, just as I was relieved to be freed from that nightmare’s clutches, I was relieved to regain a miraculous quality of life, something I never dreamed of having again.