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.