Chronic fatigue sufferers have such debilitating symptoms that it often takes extreme measures – and interminable stretches of time – to turn the condition around. But, as Karla Dondio reports, the illness can also inspire a fresh way of looking at the world.
We've all woken unexpectedly in the middle of the night and experienced the disquieting confusion of not knowing where we are or what we are doing. To suffer chronic illness is like that, but worse, because the sense of limbo never ceases; an end to the suffering seems unlikely ever to appear.
I know because I’ve been there. It started in late 2000 when I could no longer ignore how sick I was; my condition had seriously deteriorated in the past year and I knew in my bones that something was seriously wrong. I no longer had the strength to walk to the kitchen – just three rooms away – so I deferred my university studies and resigned from my part-time retail job. I was just 32 years old.
I moved to my parents’ home in Myrtleford in rural Victoria. I expected I’d convalesce there for a year and then move back to Melbourne, but this proved not to be the case. Instead, I lay flat on my back for two-and-a-half years.
Initially, I saw a steady stream of doctors. Some of them identified my state as chronic fatigue syndrome (CFS), then proceeded to tell me that there was nothing to be done except “wait it out”. I’d grown up with a healthy respect for the medical profession, but the more I saw of doctors, the less respect I felt.
While my friends were busy achieving promotions at work, starting new relationships and embarking on exciting projects, my world became defined by the walls of my bedroom. In the early stages I could still read, and that sustained me, but as my condition worsened, even this luxury was taken away from me. Still, at least I didn’t have cancer – or “the Big C”, as I referred to it. I only had “the Little C” and, to this day, I remain grateful for such small mercies.
For two-and-a-half years, though, I could only walk the ten metres to the bathroom and back. I couldn’t read, watch TV or listen to music because the effort made me physically ill – I’d experience nausea, fever and extreme exhaustion. I’ve met a fellow CFS sufferer who slept on the ground because gravity “felt too heavy”, and I was grateful my condition wasn’t as severe.
The sense of loneliness and despair I felt, however, was indescribable. I remember searching for animal shapes in the wood panelling of my bedroom, just for something to do... anything to occupy the interminable hours that I spent alone.
Chronic fatigue syndrome is not diagnosed by any scientific test. It is typically identified by a history of prolonged fatigue over months and years and a checklist of symptoms: recurrent flulike symptoms, swollen glands, muscle aches, brain-fogging, extreme weakness, headaches, digestive problems, nausea and fever. The complex nature of the condition is such that the impact of any activity does not register in the body until 4 hours later, so learning one’s limitations is fraught with peril. I once had a friend come to visit me when I was feeling slightly better than usual. I desperately needed the companionship, and so forced myself to spend a few hours with her talking about all sorts of things. It took me three weeks to recover from that meeting – recovery in this case meaning to get back to the point I was when my friend visited, which was still bedridden and exhausted.
Luckily, after a year in bed, serendipity found me. My mother was talking to a new neighbour whose daughter had suffered from CFS. This woman had taken her daughter to a doctor in Melbourne, and her daughter had recovered within a year. In CFS terms, this was lightning speed. Such a possibility immediately renewed my sense of hope.
I made an appointment to see this doctor, but it wasn’t easy. I was so unwell that I feared the journey to Melbourne, 300km away, would make me gravely ill. But I knew I had to go – and from the minute I was ushered into the doctor’s rooms, I knew I had made the right decision. Dr Ngu as warm, empathic and encouraging, firmly believing that she could help me and that I would get well. At last, I’d found someone who offered me more than a diagnosis.
Dr Ngu started me on a strict regimen of a special diet,homoeopathic remedies and vitamin infusions. The detoxification process was painful, but today my body is stronger than it has ever been. While friends tend to fall prey to colds and flu from time to time, I don’t.
In addition to the medical regimen, Dr Ngu insisted that I undergo stress-management training. This focused my attention on the negative thought patterns that often made living my life more difficult than it needed to be. Today, I completely understand and embrace the power of positive thinking: it’s an invaluable tool for withstanding the effects of illness. It also increases our capacity to feel joy and enjoy a sense of fun. After meeting Dr Ngu, I never again doubted that being healthy was possible.
Life challenges us all, but I believe nothing is in vain if we can ask, What can I learn from this?
What I learnt from my illness is that life is fragile and unpredictable. Beautiful things and moments can be fleeting and are often missed. I remember watching with awe the seasons change from my bedroom window. Recovering,I remember walking barefoot on the grass in the garden for the first time. I also remember the first time I danced again, and the first time I saw a movie in a cinema from beginning to end. I learnt to appreciate all over again those things we take for granted: the shape of the sky, the music of laughter, the beauty of being with loved ones. I’m lucky enough to have had a second chance, and for that I’m eternally grateful.
I’m still recovering from CFS and it can be frustrating at times. But I grow in confidence and health every day, and I feel happier now than I was before my illness. I have stronger relationships with my family and the friends who have supported me through my illness, as well as new friends. Now I’m pursuing a career I’ve always wanted and living the life I’ve always dreamt of having. For me, illness has brought about the realisation that life is an exquisite gift. :
Now in recovery, Karla Dondio has embarked on a new life as a playwright, poet and performer. She is also currently working parttime while building a career as a freelance writer. Karla believes that chronic fatigue syndrome was, and remains, her greatest teacher.
