Climbing Back from Severe ME/CFS
By Pris Campbell
Note: Pris has been a member of our community since 2012. For samples of the writing she describes in the article, see her website, Poetic Inspirations.
I woke up one day in 1990 with a severe case of what was later to be diagnosed as Chronic Fatigue Syndrome (ME/CFS). This is the story of how I slowly climbed out of the deep hole I fell into and also how I found a new identity through writing.
How CFS Changed My Life
My health had been good up to the day I got sick. I had a career as a clinical psychologist. In terms of physical activity, I swam and sailed, and biked daily.
All that changed suddenly the day in 1990 when I woke up very sick. I couldn’t keep my balance when I got out of bed and keeled over. I shook violently inside as if a vice was tightening around my head, made intolerably worse when exposed to light or sound.
My muscles would become rigid and my eyes jerked back and forth. I had periodic tugging sensations in my head that would pull me into coma-like sleeps, after which all of my symptoms were even worse.
The world was constantly blurred, as if I was at the bottom of a swimming pool, and I was unable to remember names of things or complete sentences correctly. I threw up every day for the first year, was limp with fatigue and had very bad pain.
I received a diagnosis of CFS the next year, and I was later diagnosed as also having fibromyalgia, hypothyroidism, chemical sensitivities, and interstitial cystitis.
During the early years, I often couldn’t talk at all and when I could, it brought on excruciating pain. For over six years, I wrote notes or faxed people since I was unable to use the computer.
Eventually, this problem was diagnosed as muscle dysphonia, in which fibromyalgia based spasms in my neck radiated up to my voice box, keeping it in a constant spasm. Allergies and tightening my throat against the pain were also factors.
I survived by pretending I was a POW, hoping that I would receive some sort of reprieve some day. It came in the form of a referral to an immunologist in 1999. Before then, I got no medical help, in spite of spending lots of money on ineffective 'miracle cures'.
Besides giving me good feedback about diet and supplements to help my immune system, he offered clonazepam (Klonopin), which slowed down my over-activated nervous system.
After taking it for three weeks, I could tolerate light and sound again and the eye/muscle jerking and head vice sensations stopped. For the first time I could sign onto a computer, watch an hour of TV a day, and have friends over in limited doses.
Later, I was accepted as a patient at the Klimas Center, where supplements have raised my NK cells from almost nothing to normal in number and into the 13th percentile in activity.
This stopped my leapfrogging from one virus to another. I also first learned about pacing there, which I understood meant avoiding push and crash by finding a level of activity that didn’t make me worse.
My Adaptations & Improvement
I started pacing on my own by logging. I filled in sheet after sheet of my daily activities, but I had no real sense of what to do with this information. If I saw I was doing a lot of something I tried to cut back but had no idea how to judge by how much.
It wasn't until I joined this program’s online courses that I started to pace myself properly by using the data to set limits on the things I did and sticking to an agenda. With those changes, both my clarity and energy began to improve. The dizziness decreased over time until it’s only rarely a problem now.
With the help of the lesson plans, logging, and experimenting with short-term goals, I gradually discovered the maximum amount of time I could spend doing different things before brain fog, pain and fatigue intensified.
For example, I can watch one TV movie early in the day without increasing any symptoms. If I watch two, I feel foggy and more fatigued the next day.
I became religious about my flat rests with eyes closed and an afternoon nap. Previously, I had thought I was being lazy and not trying hard enough, if I succumbed to sleeping. Now I see that if I miss the nap one day, I have brain fog, concentration problems and more fatigue the next day.
I also do simple exercises and stretches daily, some lying flat and others sitting. By strengthening my muscles, my pain has decreased significantly. I practice mindfulness by focusing on my breath and on the here and now, while reminding myself that it does no good to worry about bad things that might happen.
The pacing groups in this program have been invaluable in helping me find my energy envelope (my limits) and teaching me to live within it, as well as providing me with a community of other people whose goal is to treat themselves with care and kindness.
In spite of these increases I still am essentially housebound, since I can’t drive without getting confused quickly. I also get disoriented and fatigued in places that are high in stimulation, such as grocery stores, restaurants and social gatherings.
I am very grateful, however, to have improved enough to lead a satisfying, though quiet, life. I enjoy a ride over to the ocean, a meal picked up and eaten outside. I can go into a small quiet store for a short time. Doctor’s offices or the dentist no longer send me reeling with dizziness.
Writing & A New Identity
A new identity has gradually grown out of this illness, one which brings me much joy since it’s rooted in writing. I always wanted to write, had written two plays in sixth grade and started a detective story in 9th grade. Even though I went into psychology, I never lost my longing to be a writer.
When I had improved enough to use the computer again, I stumbled across a “write a haiku a day” site. I didn't have a clue what I was doing but writing daily gave me a taste of the creative life again at a pace I could sustain. It became a life line since it brought me back to a taste of the life I once wanted.
I next stumbled across a poetry board, learned about free verse and a bit more about haiku. I was still a beginner, but I was having fun. I had found something that allowed my soul to speak again.
I was lucky to meet other writers I liked who saw something good in my writing, and offered me encouragement and suggestions. I was like a starving person being offered a feast. I loved learning again, this time in short forms I could manage with my cognitive limitations.
Over time I got better, received recognition from my peers, and was published in journals and even published seven books.
In so many ways this was a journey back to the beginning, to the aspiration I had when 11 years old. I had finally realized the dream of being a writer.
I’m grateful for my improvement. I treat it as a gift.