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A mother’s world of pain and frustration

Clytie Siddall would love to go back to lecturing at TAFE. She would love to be able to walk to her letterbox or play with her young daughter or take a shower without collapsing with exhaustion and severe pain.

But Mrs Siddall, of Renmark, can hardly do anything physical at all. Four and a half years ago she was diagnosed with myalgic encephalomyelitis, better known as chronic fatigue syndrome. As Mother’s Day approaches, Mrs Siddall this week reflected on why she keeps going when simple movements - like standing up - are an exhausting and painful prospect. "I keep going for my children," she said. "They’re what makes living like this worthwhile."

Chronic fatigue syndrome is a severe disabling and chronic condition affecting most systems of the body, including the immune, endocrine, muscular-skeletal and central nervous systems. Sufferers experience disabling levels of muscle fatigue, muscle pain (often severe), a ‘flu-like’ malaise, abnormal exhaustion unrelieved by sleep and some loss of brain function - including loss of concentration and short-term memory, dyslexia, nausea, clumsiness, disturbed balance and depression.

Mrs Siddall experiences pain most of all.

"It’s like a medieval torture," she said, propped up in bed on Wednesday. "It’s like my nerves are all confused - they go on and off when you least expect them to." Mrs Siddall said she has her good and bad days. She must stay away from people with colds as she is extremely susceptible to infections. She takes a lot of medication and spends nearly all of her time in bed.

She said she contested the first positive diagnosis of her condition, maintaining that she "just felt tired". It turned out to be a mistake. "I kept on working against my doctor’s orders," she said. "I was hospitalised for four months after I collapsed in the lecture theatre."

Mrs Siddall said a former student of hers, Joanna Hristodoulakis, found some information about CFS and even located an Adelaide specialist for her.

"She said I had helped her get through Year 12, so she was going to help me get through this," Mrs Siddall said. "I probably wouldn’t have been able to do all that on my own."

There is no cure for chronic fatigue syndrome, which is still largely misunderstood by medical and health professionals, and no cause has been determined. It affects all socio-economic groups and all ages - including young children. It is not a new illness, although its prevalence does appear to have increased in the past 50 years. Little research has been done, although the University of Newcastle is understood to be the world’s leading research body on the illness. "They’re using me as a guinea pig for some experimental medications," Mrs Siddall said. "I do feel a little better."

The cost of CFS to Australia is incalculable in terms of medical treatment, loss of productivity and medical benefits. Most of all, there is the human cost of shattered lives - lost careers, lost independence and the corrosive effect on relationships of disbelief in an illness which is neither understood nor fully accepted.

"It’s frustrating for me and those around me, because I’m sick and I don’t get better," Mrs Siddall said. "There is no sense of control with this condition, and patience is a virtue I’ve had to re-learn. I’ve had to re-adjust my attitude towards life, and be content to just be rather than do. You’ve got to look at the bigger picture."

Mrs Siddall’s doctor has told her she will eventually recover, but that the process will take several years.

"Until then, I’m just going to take things one small muscle movement at a time," she said. "I’ve learned to take enjoyment from the little things in life." Mrs Siddall keeps in touch with the world through her computer, mainly with a support and advocacy group for CFS sufferers, OZME. "The computer is my life line," she said. "I’m in touch with a lot of people in the same boat as I am - I can complain without making them feel bad, because they know what it’s like." Mrs Siddall has written Internet sites and has contributed occasional articles, showing that even with her debilitating condition she is determined to beat it.

"I’ve simply got to pace myself, hold myself together and maintain my relationships," she said. "I would like to go back to lecturing because I love teaching, but I doubt I could go back to a high-stress environment again. I’ll try and ease into it if possible." Facing yet another Mother’s Day with CFS, Mrs Siddall has three children, two teenagers and a seven-year-old, who could wish for nothing more than their mum to get better. "Trinh (aged seven) came in the other day and told me I was the best mummy in the whole wide world," she said. "That’s what helps the most."

From The Murray Pioneer, Friday, May 08, 1998
reproduced with the kind permission of the Editor.

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Moira A Smith - Canberra, Australia
posted 12 May, 1988
last revised 10 June, 2004