How I Improved from Near Bedbound to 80%, Part 2
By Phoebe Love
Note: Phoebe is a ME/CFS and fibromyalgia patient from Wisconsin and has been a member of our community since 2014. She recently resumed her work in spiritual ministry and retreats.
In part 1 of my story, I explained the importance of pacing to my recovery. In this part, I’ll describe the dramatic effects of dietary changes, my work to manage stress and emotions, and the importance of support.
Dietary Changes Bring Reductions in Pain and Fatigue
Logging helped me notice fluctuations in my fatigue and pain after meals, but I had trouble identifying what foods triggered the reaction.
I tried eliminating food groups one at a time, but even with a year’s experiments, I could not correlate specific foods with symptoms, so I turned to a nutritionist, who gave me a program designed specifically for me.
I ate meat, fish, or eggs, fresh vegetables, and a half cup of beans or lentils for every meal. I ate a half cup of roasted nuts between meals. She took me off all grains and starches, dairy, fruit, sugar, coffee, tea, and alcohol, to down-regulate the production of stress-hormones like cortisol and epinephrine.
The animal protein, beans, and nuts allowed the body to repair itself and rebuild energy stores. Also, I drank ¾ gallon of warm water daily to keep me consistently hydrated and help regulate my temperature.
It was not easy and incredibly boring but with the nutritionist’s support I began to notice a change in the severe fluctuations of my fatigue levels. Within six months I was able to increase my activity without a crash for the first time in years. I was also carefully pacing and resting.
It was empowering to finally experience some consistent changes. This kept me motivated to continue the diet over the long haul. Two years and two months later I was finally pain free and my fatigue was more manageable. Changing my diet was crucial to my recovery.
Managing Stress and Emotions
Like most people I had ongoing life challenges. I had an adult daughter with disabilities and a husband who worked in another city during the week. I had been resilient in the past but trying to manage a chronic illness on top of things made me anxious and depressed. When my youngest brother was killed in an accident, I had grief to deal with as well.
Through logging I was able to see what specific stresses were impacting my symptoms. Constant pain triggered intense anxiety. Grief over my brother meant I cried a lot and made me more fatigued. Family difficulties that had always existed now took on new weight and drained me of energy. I had to address all of these.
I was fortunate to find a counselor who was willing to do a 30 minutes phone session once a week. It made a big difference to have someone listen to me without judgement. She created a safe place where I could express my sadness and frustration.
She offered empathy and gave me simple stress-relieving exercises. For example, she taught me to turn toward my feelings when I felt overwhelmed, telling them I was paying attention to their message and then ask them to calm down.
Help from Amygdala Retraining and Yoga
I also found help with the Gupta Amygdala Retraining program. Its aim is to help people change their habitual response to stress by retraining the brain’s subconscious reactions and teach the body to relax and recharge.
Using a combination of neurolinguistics exercises for physical symptoms, guided mediations for anxiety, and breath work to calm the nervous system, the program helped me cope and improve.
I didn’t see instant results, but by repeating the program exercises three or four times a day over six months, I experienced subtle changes in my symptoms. Like a piece of music played over and over again, I slowly learned new ways to respond to my illness.
I slowly learned to coach myself with positive phrases like, “You are going to be OK.” I learned to visualize what made me happy even if it was beyond my reach.
In the past, I had loved to dance so I began imagining myself twirling freely without pain. I listened to guided meditations from the program that helped me relax so I could better manage my anxiety.
And I learned to breathe slowly and deeply into my symptoms as a way of making peace with them. The program helped me accept my illness while giving me tools to recover.
Modified yoga helped me cope and improve. For months, I only did three gentle yoga poses lying in bed each day but it felt like a big accomplishment: As I improved I slowly added Bow Spring Yoga once a week, which was less fatiguing for me than traditional yoga.
Another key component to managing stress was the support of others. The online support from the ME/CFS Self-Help Program helped alleviate the loneliness of being chronically ill. It connected me with people who understood the struggle.
Along with family, I also had the incredible blessing of old friends who rallied and helped. They brought meals, ran errands, helped with our daughter, and gathered to pray with me once a month.
With my husband gone during the week for work, my friends made sure I was not completely isolated during the time I was housebound.
On Wednesday nights, one of them would bring a meal and spend the night with me. A long-distance friend sent me a card each week. It was a gift to have friends who cared, acted, and, most importantly, believed that I had a real illness.
My spiritual life was also crucial. It had brought me strength in the past but now I found the silence of being sick and bedridden often too much to bear. I couldn’t even think, let alone pray. Then one night I experienced a shift and the silence itself became prayer for me.
Once I could read again, I found a book called Beginning Again: Benedictine Wisdom for Living with Illness. It helped reshape my spiritual life to fit being sick and brought new meaning to my experience. I began to discover the hidden gifts of illness—simplifying, slowing down, living quietly and being present.
Today I live at 80% on the self-help program’s rating scale. This means that I have an activity level close to that of a healthy person of my age and my symptoms are mild.
It took me four years to get to this point. I continue to follow my programs; pacing and resting have become routine for me. In addition, I have been able to add activities I never dreamed would return. I am enjoying family outings, traveling again, and working part time.
It took a very long time with more downs than ups, but the discoveries I made through logging helped me learn to pace my activities, rest in new ways, get emotional support, and practice stress management. These along with changing my diet helped me slowly improve.