May 18th 2009
Walk in to Denise Harrison’s home in Nelly Bay and one thing you might notice is a shelf full of trophies – awarded for success in tennis, netball, indoor cricket and a host of other strenuous activities. Look further and you might also notice the number of beds, chairs, pillows and mattresses scattered through the house and beyond into the garden. They are there to provide resting places for Denise; for her life has changed from one characterized by active involvement and success in sports to one in which every effort, almost every movement, has to be carefully considered.
Denise is one of an estimated 80,000 in Australia who suffer from ME, Myalgic Encephalomyelitis, otherwise known as CFS or Chronic Fatigue Syndrome. This month is International ME/CFS Awareness Month.
To date, there is no specific test for this complex illness, which affects multiple systems of the body and, in particular, the nervous and immune systems. Diagnosis is by way of symptoms, which often include not only a bone-crushing, relentless, total mental and physical exhaustion, but also short-term memory and concentration problems, difficulty reading and writing, loss of balance, problems focusing, ringing in the ears, extreme sensitivity to light, sound, temperature and smell, un-refreshing sleep, severe muscle and joint pain, nausea, abdominal cramps, palpitations, general malaise and flu-like feelings, and sensitivities to foods, chemicals and medications – to name but some.
And the even worse news is that, as yet, there is no cure and only limited effective treatment. A few sufferers recover completely, others are able to reclaim part of their lives but face the possibility of relapses, and for others it is, literally, a death sentence.
For Denise, the disease came on slowly. Difficulties with memory, developed into finding that she could no longer participate in sports as she had. Within two and half years, she was in a wheelchair, finding even taking a shower devastatingly tiring.
Often, to the fury of sufferers and their carers, ME/CFS is in some circles – including some (but not Magnetic Island) medical circles – regarded as ‘all in the head’ of the sufferer. Patients are subjected to behaviour therapy or exercise regimes, both of which, according to medical reports, often make things worse. Some are seen as hypochondriacs or attention-seekers. In worst cases, patients are forcibly incarcerated in institutions for the mentally ill and children with ME/CFS are taken aware from their families. This, despite the World Health Organization and thousands of medical reports confirming the neurological or physical nature of the disease.
Magnetic Island doctor, Sarah Lythgoe, says “People need to be aware of ME – which is a physical illness, and one which most GPs would come across at some stage”. She went on to say “Sadly, as with so many medical conditions, many of the questions about ME/CFs are still unanswered. The important thing to realize is that people with this illness are not malingerers, they are genuinely suffering physically and deserve understanding and compassion. And there needs to be more research into the causes and treatment of the disease.”
With a wry laugh Denise noted that one of the extraordinary responses of some people to her illness has been not only skepticism but also envy. “People would call me lucky because I didn’t ‘have’ to work.” Little did they know that Denise would have loved (and needed) to continue working – and, indeed, is still hoping to get back to part-time work. “It is hurtful when friends call you lazy because you need to go home to bed” she commented.
Like many others, Denise finds the ramifications of the disease distressing – unable to work she confronts continuing financial difficulties. She finds it hard to maintain social contacts because going out often takes too much energy, and she attributes the breakdown of her marriage to contracting the disease. Not surprisingly, for many ME/CFS sufferers, the symptoms and reality of living with the disease lead to severe depression, and others believe depression to be a result of the clinical impact of the disease on the brain.
Denise has come to terms with her illness in the only way she can; she has learned to live with it. Like others, she has learned to ‘pace’ herself, to live within her limits and schedule long rest periods around periods of exertion – and to appreciate what she can still do.
And, until such time as the medical profession can unlock the mysteries of ME/CFS, tens of thousands of people around Australia are having to do just that, while they wait and hope for a cure.
For further information: www.mecfs.org.au
Story: Wendy Tubman
Photo: George Hirst
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