BY SUSAN PRUYN Special to the Voice
After the birth of my daughter Sarah, I never regained the energy that I had before her birth. I thought it was a new mother problem. In my mind, my energy would return in time and I just had to tough it out.
When I returned to work my energy levels worsened. My husband and I had a cleaning lady to make my life easier. I couldn’t wait for her to finish so I could spend the rest of the day in bed.
I read an article in Canadian Living that talked of a “Yuppie Flu.” The symptoms described what I was experiencing.
At my husband’s urging I went to my doctor, a well-known diagnostician. He listened carefully to my symptoms and wrote a request form for a titre for Epstein-Barr virus. He told me there were too many viruses going around.
The results came back with an abnormally high reading. The test was repeated in six months with the same results.
Then my husband made me make the best decision for my health in my married life. He told me that the way I was deteriorating was no good for my health and no good for the marriage. He told me I should quit my job and we would live on his salary.
Eventually I was referred to Dr. Walsh at McMaster hospital. Dr. Walsh had seen hundreds of patients suffering from the same ailments as mine. He wrote up my papers for a CPP disability. I had kept telling myself that somehow I could get better and go back to work. I hadn’t want to apply for disability but again my husband told me that I should.
Dr. Walsh told me that I hadn’t realized yet the wisdom of walking away from the job. In time I was told I would figure it out. He also told me that despite something not right in my body that I had managed to keep my spirits up. Anti-depressants were not recommended. He told me that I was a tiger but didn’t know it yet.
I kept telling myself that something had my body but it didn’t have my soul.
At this point if time I was heading-up the local support group for chronic fatigue syndrome (CFS). We heard of a Dr. Byron Hyde, chair of the Nightingale Research Foundation, who was to chair a symposium in the United Kingdom. He was a recognized international authority of the disease.
I called Dr. Hyde’s office and asked if he would come down to speak in the Niagara Region after the symposium. Unfortunately, we had no money to offer him for speaking.
Dr. Hyde called me at home that evening to query when I wanted him to come.
I was supported for the cost of the venue by the local Kinette group in St. Catharines that also had my sisters Linda Burak and Jane Lindsay as members. With this support, our group was able to arrange a forum at Brock University at Pond Inlet.
The press was empathetic to this forum. Many stories appeared in publications on CFS about individuals in high public contact for example teachers, nurses, airline individuals, that were on sick leave, who could no longer carry on working.
The night of the forum every chair was full. We actually had to turn people away. This forum did a great deal of good in educating the public. It helped individuals come to terms with what they were experiencing healthwise.
Although ill, I managed to head the support group for four years. I don’t know how I did it but I had help from many individuals.
I have now lived with this autoimmune illness for thirty-six years. I have spent excessive hours in bed than is normal for an adult. I’ve had repeated lung infections, asthma and sore throats. For a ten-year period I had a continuous sore throat.
I’m forever grateful to the people who supported me and understood that what happened to me was not something that I wanted
Enter Covid-19, the pandemic. This is it, I thought. I’m finished. I spent the first three months isolated at home. Others did what was necessary, the groceries, the banking.
My husband asked me if I was going to spend the rest of my life at home Actually, I had thought about it.
I’m very social. If I could spare some energy for community work, I was happy to do it. I was always upfront about my illness. To stay at home forever would not be good.
So I ventured out with my mask to do groceries, banking. I listened to all the best medical advice. I decided I had no choice but to take the vaccine to return to society. I was sick for a day and a half with the first one. The next shots were easier.
Now, the good news. All my lung issues, asthma and sore throats have gone away. I thought, if this is all it takes to help my lungs and sore throat, I’m going to wear my mask in public forever. Lung medication was especially hard on my body. Not having to take the medicine and hear my lungs gurgling is a great thing to put in my past.
During my observations on how people treated this autoimmune illness, there was often derision, condescending comments such as, I get tired at times too; you’re a fake; you’re not really sick. If it was a teenager who had CFS, I’d hear that some were accused of being on drugs. If it was a man, most did not even want to talk about it. It was just an added burden to hear in addition to being constantly ill.
While arranging for a flu shot I listed chronic fatigue syndrome as an autoimmune illness. The pharmacist asked if I was on antiviral medication which I wasn’t.
What struck me after all this time, the medical community had come up with something antiviral to combat CFS/ME. ME, myalgic encephalomyelitis, is just one of the many other names this disease has. I hope news of antiviral medication helping those with this complex disease is of consolation to those who have suffered, those who had been made fun of, those who have supported love ones trying to figure out what was causing this bewildering barrage of symptoms.
My quality of life has improved. I’m forever grateful to the people who supported me and understood that what happened to me was not something that I wanted. I did my best to incrementally get better. I enjoy mild exercise, good food, chocolate, movies, plays, bridge, people that make me laugh, community causes and extended family. I’m the oldest of nine siblings and my husband John is third in a family that has nine brothers and two sisters.
When someone is ill and the medical community can identify the problem and come up with solutions to make them better; this is a healthy society.
The Nightingale Research Foundation is still in operation in Ottawa.
