"You have chronic fatigue syndrome."
The diagnosis brought relief after 18 months of uncertainty. I had heard of chronic fatigue syndrome. It was the yuppie flu, wasn't it? It was around in the late eighties and then disappeared. No one got it any more, or so I thought.
I was everywoman - busy with my public-service career and my family of two young children. And then in the mid-1990s, after a viral infection, something began to go wrong. I was tired all the time. "Who with children and a busy job isn't?" I told myself. We live in a society that almost requires it. So I ignored it.
Unfortunately, that didn't work. I started getting sore throats, headaches, muscle aches. I jokingly asked my husband to pick up a new body for me when he was out shopping. Too bad he couldn't.
I popped pain pills so I could go to work. But my body had other plans. In the summer of 2001, I stopped sleeping and my brain stopped working. Brain fog took over. I couldn't think straight, remember or multi-task. I was forced to stop - everything.
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I went to the doctor but didn't get an answer. Every test came back normal. But I knew I wasn't. And so it continued, until finally I got a diagnosis, although not a solution.
Chronic fatigue syndrome is invisible and isolating. It's almost impossible to convey with words the utter exhaustion this disease brings, not only physically but mentally and emotionally too. Its other name, myalgic encephalomyelitis, means widespread inflammation in the muscles, brain and spinal column. It's also known as ME/CFS.
The fatigue is profound. It's not the welcome, sleepy tiredness most of us experience at the end of the day. It goes to the very core, a wired, jittery fatigue from which there is no relief.
I've been told I look fine. That's good - I'd hate to think I look as bad as I feel. A sleep study confirmed I had an almost total lack of restorative sleep. Each day is an unknown. The doctor says to think of it like being in a glass box. On a bad day, the box is tiny. I can barely get out of bed, every muscle aches and my head pounds. On a good day, the box is bigger, but I need to figure out how much bigger, otherwise I will crash through and end up bedridden. The objective is to pace, to expand the size of the glass box without breaking it.
I have been virtually housebound for much of the past eight years. Even on a good day I find it hard to do the simple things most of us take for granted. I have difficulty planning a menu or deciding what groceries to buy. Going to the grocery store is a rare event and the stimulation of being out and about is overwhelming. I've learned that doing one thing a week is about my limit - so when I have a doctor's appointment, for example, that's it for the week. I need at least one nap a day to try to replenish my energy stores.
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There is currently no cure. The treatment is symptom management, which is different for each person. I have had some success with pacing myself, sleep and pain medication, careful dietary choices and relaxation techniques.
Most people's eyes glaze over if I tell them I have chronic fatigue syndrome. Who isn't tired? Why don't we just suck it up like everyone else?
We would if we could. This is an extremely disabling disease. It involves many different body systems and it's a trickster, affecting each person somewhat differently. Contrary to my initial thoughts, it's fairly common; it affects children too. People with this illness tend to drop out of sight, with the result that others do not see the devastation it brings.
Few doctors know much about it and there are no treatment centres, so people are often misdiagnosed or forced to go from doctor to doctor searching for answers. This is gradually changing. The cause remains unknown but researchers around the world are searching for answers as to how it targets the brain, the immune system and the endocrine system.
I've met many people with this illness. They, like me, have been snatched from their formerly productive lives, put in the glass box, dismissed and told it is not life threatening. Perhaps not, but it is life-diminishing. It puts extreme limits on my daily activities.
I have come to accept the disease is relapsing and remitting. It comes and goes like the tide, with crashes and then periods of moderately good health.
My glass box is getting bigger. With assistance from my family and friends and caring health practitioners, the crashes are becoming less frequent and the periods of health longer. It has been helpful to know I am not alone. I am regaining some of my former life. I have found renewed purpose in advocating for research and treatment for those suffering with this illness. I am able to get out a bit more but must constantly be vigilant not to overdo it.
I'd like to be able to say I have recovered. But I'm optimistic that with more understanding, support and research I will. Maybe I won't need that new body after all.
Maureen MacQuarrie lives in Toronto.
Illustration by Tiffy Thompson.