A sufferer of chronic fatigue syndrome describes how the disease turned his life upside down.
Two years ago at the age of 38, I was living a full and energetic life. I worked, socialized, and fixed things at the weekend. I had stacks of energy. I felt I could do anything.
I had a rich and fulfilling home life and a real sense of what my life was about. I cycled to work and didn’t use a lift if there were stairs handy. I took long walks and ate good healthy food. When I worked hard and got tired, a good night’s sleep always fixed me up.
Then suddenly my life went into reverse and I was left helpless. Nobody could tell me what had gone wrong or how I could be cured. What had happened?
My workload had increased until it was impossible to do everything in normal office hours. I worked late, I took work home and came into the office at weekends. I found my self getting very tired, but I was sure I could get through if I could just keep going.
Small things began to go wrong. I made a number of stupid mistakes. I found myself unable to remember familiar names or even the most basic details of the projects I was working on. I found it difficult to get myself to the office in the morning. I dozed at my desk.
Thinking I was run down, I visited my doctor. She suspected glandular fever and sent me for some tests. But the tests failed to positively identify any specific illness. My overwhelming symptom of fatigue continued. I went back to work, convinced I could work it out of my system. Three days later I collapsed from exhaustion. After they’d wheeled me out, five people were recruited to do my old job.
I was suffering from a little-understood illness called chronic fatigue syndrome, CFS (also known as ME). So what does CFS feel like? Imagine yourself being the most tired and exhausted you have ever been.
Imagine feeling that way for days, weeks, and months on end. Imagine too that nothing you can do, no amount of rest, no amount of healthy food and exercise, no amount of relaxation therapy, no drugs, and no treatment can relieve that crushing leaden burden of exhaustion.
Worst of all, despite extreme tiredness, it is almost impossible to sleep — and without sleep, recovery is extremely difficult.
For 12 months I got tired doing absurdly undemanding tasks. A trip to the local shops in the car — less than a kilometer away — was something I prepared for by lying still and resting completely for several hours. On some days the big event was the walk up the drive to collect the mail, on other days even that was beyond me and I just lay in bed.
I soon learned that my use of energy had a sort of “Bankcard” quality to it. I could often summon up sufficient energy to do a specific task “on credit”, but living on energy credit proved highly counter-productive because it was inevitably followed by almost total exhaustion. Severe fatigue would then persist for several days or even weeks — the equivalent of the “bill” arriving, and with punitive rates of interest.
It was too risky to undertake any but the shortest outing. Embarrassing incidents of my falling asleep in a car park, on buses, and even in a lift made me very wary of venturing out alone.
Other symptoms were a kind of transient mental confusion, difficulty in communicating clearly, slurred speech, poor sentence construction, errors of judgment, loss of memory and concentration, and a slow and erratic way of working.
Doctors suggested various remedies including Gammaglobulin treatment, or massive vitamin B injections. Other doctors doubted the effectiveness of these, and recommended complete rest. Yet others saw stringent dietary control as the cure.
In reality nobody I spoke to really knew what CFS was caused by or how to cure it. It is however known that CFS has something to do with the immune system. My own theory is that CFS is caused by the over-use of adrenalin. (Athletes and the very fit are known to suffer from CFS.)
In my case, I think CFS developed along the following lines: overwork and long hours caused stress, and the stress caused my adrenal system to work too hard.
Like an overstretched spring, my body then lost its natural powers of recovery because it was propped up too often by adrenalin. This in turn depressed my immune system and allowed a virus, possibly glandular fever, to attack my body worsening my already poor condition.
To cure myself, I needed deep relaxation/meditation to rebuild my energy. I tried a Tai Chi course. There I met a traditional Chinese medicine specialist who successfully used a form of acupuncture. The combination of Chinese medicine, Tai Chi, and a mild anti-depressant pill to help me sleep, worked wonders.
Now that I have almost recovered and am ready to start work again, I realize what a disruption CFS has been for me. I had to sell my car and move out of my house. I was forced into the unholy practice of making loan payments by credit card. Comcare accepted responsibility for my illness as “work caused” for a while but then decided against it.
Conversely, the American Journalists’ Association, my family, and friends have been a collective tower of strength without whom I would not have survived.
What have I learned from a year of CFS? To start with, don’t rely on your employers to help you if your job makes you ill. You may have to prove the unprovable to get help (i.e. that it was the job that made you ill).
You will also have to argue and fight with an indifferent bureaucracy when you are least able to do so. Many people don’t understand CFS and think it is something you can snap out of, but others are surprisingly sympathetic and helpful.
What I learned most of all is never ever take your good health for granted.
Heed the warning signs. No job is worth it, however, highly motivated you might be or however essential your work might seem. To paraphrase the old saying: “A week off in time saves nine”. In my case, it might have saved me a particularly miserable year.