Out of the Shadows: My Struggle with Chronic Fatigue Syndrome

It was a wonderfully warm Valentine’s Day in Vancouver, and I had recently celebrated my 25th birthday. Though I loved the rare sky-blue days, the past few weeks I had experienced unusual flu-like symptoms. Dizziness, nausea, blurred vision, and a strange type of fatigue weighed me down. I decided to take a break from my classes at the University of British Columbia and drive to my parents’ house in Abbotsford for some of my mom’s tender loving care.

Illness was not the norm for me. In 1986, when these symptoms first hit me, I was juggling a full-time class schedule with two part-time jobs and extra work in the thriving Vancouver film industry. I was active in my church, continued to hone my photography skills, and found time to spend with family and friends. I was firing on all cylinders and loving it.

But after twenty minutes of negotiating Vancouver’s busy streets, I knew I was in danger. An intense burning sensation started at the base of my neck. My eyes felt heavy and kept closing. As I passed the Vancouver General Hospital my initial thought was to go straight to the ER, but I was convinced I could make it to my parents’ place.

As I came to the Port Mann Bridge a tingling sensation, like tiny needle pricks, spread over the top of my head. Feeling dizzy, I was scared that I would faint while going over the bridge. My heart began racing, and I gasped for air. The tingling rapidly changed into a progressive numbness that cascaded over my neck and down my arms. I could see my hands gripping the steering wheel, but they felt like cotton balls. “This must be a stroke,” I thought. I began praying out loud, begging God to spare my life. I managed to get over the bridge and immediately stopped the car, called an ambulance and was rushed to the nearest hospital.

This was the beginning of six years of confusion, questions, emergency room visits, hospital stays and medical testing. My symptoms confounded over 40 doctors and specialists (It was not until 1991 that I was finally diagnosed with severe Chronic Fatigue Syndrome, or CFS as it was known then.)

I couldn’t continue my studies, gave up my two jobs, and needed my family to feed me, drive me to doctors’ appointments, and help me take baths.

I was tested for multiple sclerosis, brain tumors, lupus, rheumatoid arthritis, diabetes, thyroid disease, cardiac problems, and a host of other ailments. Each time, I was pronounced “healthy.”

Throughout this time I had friends from church come and pray for me. I fully believed I would be healed, but after every prayer time, there was no change. I called the elders to pray for me and was glad for their presence. But my symptoms continued to get worse.

Many physicians thought I was clinically depressed or concluded my symptoms were emotionally induced and advised me to see a psychiatrist. I already thought I was going crazy, so I readily agreed. But after just three visits, the psychiatrist told me that my mind was sound and advised me to seek medical help. When I showed her the list of doctors and specialists I had already seen, she just shrugged her shoulders.

With medical doctors unable to provide any diagnosis or help, I began to see naturopaths, allergists and chiropractors.

After discovering I had recently developed a number of allergies, I started taking supplements and stuck to a strict diet that eliminated sugar, white flour, yeast, cheese, and fungal foods. Finally I saw some improvement.

In 1987 I had moved to Calgary to live with a friend and found a part-time job at a cancer-research facility. They had flexible hours but initially I only managed to work two hours a day. I needed to rest or sleep through much of the other twenty-two hours just to make it to work again. During the next three years, my energy slowly increased until I was able to work five hours each day and socialize on weekends.

Dr. Ellie Stein, a Calgary-based expert on ME/CFS (or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome as it is known in North America today), explained that recent studies show this disease to be “a disorder of cellular energy. This means it affects every cell, every organ and every system in the body,” she explains. “That’s why just focusing on one thing has proven to be unsuccessful.”

In the past two decades of working with ME/CFS patients, Dr. Stein has written a manual entitled Let Your Light Shine Through that assists patients with practical ways of managing their symptoms. She encourages people who have this disease to take charge of every aspect of their life. By looking at one problem, like lack of sleep, and working on gaining control in that area, there can be significant improvement. Then diet or energy management can be addressed. Over time, many of her patients are able to see good results.

Doris and Peter, shortly before their marriage.

In 1990 I married Peter Fleck, an exceptional man with boundless energy. He has been compassionate and understanding with my many limitations and relapses, but it has not been without huge concessions and tough decisions.

I had a relapse just before our wedding day and progressively became more debilitated until I was bedridden again a few months into our marriage. Peter had been working long hours on the fledgling newspaper he founded, City Light News, as well as doing all the cooking, cleaning, and grocery shopping. Peter knew I needed 24 hour care – more than he was able to provide. Luckily some friends who were naturopaths agreed to take me in. On the cusp of New Year’s Day in 1991, Peter dropped me off at their house.

The next six months were the hardest of my life. I needed help with every action and could barely walk a few steps. Even though I was being fed nutritious food and was taking an army of supplements, I was seeing no improvement.

I began to sink into a deep depression. On my 30th birthday, I imagined the rest of my life in an extended care facility. I knew I couldn’t put Peter or myself through that kind of torture. For the first time, I began to think of ways to kill myself. In despair I cried out to God for help and for Him to provide some way to recover my former health.

Peter and I spent three days praying and fasting. Though there was no clear direction from God, courage filled me and slowly dragged fear from my body. A deep well of thankfulness for the love, support and prayers from friends and my church community helped me fight my way out of that two-year long relapse, and every relapse that followed.

I began working as a journalist for Peter, and writing for City Light News led me to work for other Christian newspapers and magazines across the country. I still had relapses, but they had become more manageable.

In 2008, after a two-year wait, I was able to see Dr. Ellie Stein and have benefited greatly from her support groups and sage advice. Even though CFS is a debilitating disease, it is not deadly. With her help I came to terms with the limits this disease imposed and was able to look at the positive, fun things I was still able to do.

Then suddenly, in 2012, just after I turned 51, I was physically attacked by another disease: after feeling a hardening of my right breast and the growth of a lump, I went for an ultrasound and mammogram and heard the shocking news that I had breast cancer.

I quickly got chest and spine x-rays, a bone scan, and an abdominal ultrasound. My team of doctors wanted to see how aggressive the cancer was and how far it had spread. The only type of cancer that matched my symptoms was inflammatory breast cancer, a lethal form of the disease. My oncologist and I believed I might only have months to live.

With this uncertainty weighing on me I took a midnight walk under the stars that illuminated the 40 acres of land we had recently moved to in Red Deer County. I cried and prayed for guidance, and then finally gave everything over to God. For the first time, I felt complete peace.

All eight biopsies indicated that I had a type of non-invasive breast cancer (ductal carcinoma in situ-DCIS). Surgery was scheduled immediately. I made it through the radical mastectomy and recovered without having a CFS relapse. Amazingly, there was no need for radiation or chemotherapy.

Breast cancer is a visible, provable disease – CFS, for the most part, is not. Women who battle breast cancer are hailed as heroes and survivors. Those who fight CFS daily, often for decades, may be misdiagnosed, medically alienated, or even abandoned by family and friends. It is much harder for friends of CFS sufferers to know how to support them. How do you encourage someone to get up and fight a disease when there is no strength to fight left in them?

As a cancer patient, I was contacted by a group of nurses who provided me with information, met me at each appointment, called to see how I was doing, visited me in the hospital, and provided discounts on medical apparel I now needed. I could phone anytime, and they would be there. The pretty pink ribbon that represents breast cancer awareness is everywhere: on T-shirts, calendars, notepads, dinner napkins, balloons, yoga mats, license plate frames, and even dog apparel.

Doris & Peter Fleck today

CFS is represented with a royal blue ribbon, something I was completely unaware of until I was working on this article. Even now, 30 years after I first showed symptoms of CFS, many doctors don’t believe it is an actual disease.

I recently joined a committee as a patient representative with the Alberta Medical Association to help provide accurate diagnostic guidelines for General Practitioners in this province and across the country. Although recognition is slow in coming, the body of evidence proving CFS is a debilitating disease is growing. My hope is that someday people with this disease will be treated as well as those who have breast cancer.

Doris Fleck shared her story, as well as tips for friends and family members about helping someone living with CFS, in a recently published book entitled “Lighting Up a Hidden World: CFS and ME” by Valerie Free. Available from Amazon, or visit www.valeriefree.org

Dr. Ellie Stein publishes a monthly newsletter on current research, events and support for those with ME/CFS. For anyone wishing to join the newsletter, Dr. Stein can be contacted at espc@eleanorsteinmd.ca.

Photos courtesy of Doris Fleck