Humans of ME/CFS
I suddenly became ill on Jan., 27, 1991. I was an active woman—a wife and the full-time working mother of two sons, a 3-year-old and a 6-week-old. I wrote the following poem two years later as it expressed the raw emotions I felt living with ME/CFS. It has truly been a roller coaster ride, with the “peaks” less than 50 percent of the “person I used to be” pre-illness.
I am now in my 26th year of living with this illness. This last year has been brutal, leaving me mostly homebound. I could have sat down today, this many years later, and written this same poem. Other than the change of name from CFIDS to ME/CFS, the feelings are the same.
My life is forever changed and continuing on, with a purpose for each day, is my goal. I have learned to rely on faith, gratitude, mindfulness and grit.
ROLLER COASTER RIDE
Riding on the crest of the Roller Coaster –
On track with a loving family and rewarding career,
Looking forward to accomplishing more of my life’s ambitions,
Living for future glories to become happy memories,
Everything is at an accelerated pace.
Right when my life seems at its peak; the ride takes a dip.
Oh, the anxiety, the exhaustion, the pain, the fright, the isolation.
Anger surfaces and bursts out at every opportunity.
Self-esteem plummets—where are all my pillars of pride?
Today stretches into a thousand tomorrows in snail’s-pace motion.
Existence becomes a day by day, minute by minute effort.
Relinquishing independence, fighting for an ounce of energy; rest and more rest.
Regaining momentum; Reflecting on my life; Searching my soul for gems of truth,
Inching my way forward, ever thankful for small shifts—both mind and body.
Determined that I will conquer this illness, whether cured or not;
Ending one cycle only to catch another Roller Coaster Ride.
Lisa Ann DeLisle Espiritu, 1993