Today, August 8, is Severe M.E day — a day to remember those suffering from Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome or Tapanui Flu. It’s also a day in which local, Aubrey Urquhart (22) wants locals to know and understand that he is not a freedom camper mooching around Penrith Beach; he is a local who uses the lakefront as an important part of his rest and recovery from the debilitating symptoms of M.E.
Urquhart is a local resident who grew up in Wanaka; he went to Wanaka Primary and Mt Aspiring College. But in his prime at 19 years old and in his first year of university in Dunedin, he was struck down with M.E. “At first it was like I could hardly get out of bed,” said Urquhart. “I had migraines, and was feeling terrible. Then I got a bit better and came home for the summer then got well enough to go back to study, but had a big crash, so came back to Wanaka. Then I had four big crashes a year and a half ago and I’m still coming back from them.”
Life with M.E is different for everyone — some can be in a permanent crash state, other flow in and out of them, but never reach a stage where going back to work or study is possible. At his very worst, Urquhart said, “I couldn’t keep my eyes open, I couldn’t talk, shower, or even sit up to eat. Any movement was way beyond my capacity. I could still say a few words but no conversation. Also I had insomnia and was only getting about one hour of sleep a night and felt constantly on the verge of a panic attack.”
At his best, Urquhart can only stand up for 15 minutes a day if you add it all up, “but even at the best of times I have brain fog, gut symptoms, weird sensations under my skin, and sleep problems.”
M.E., is characterised by incapacitating fatigue, (experienced as profound exhaustion), problems with concentration and short-term memory, non-refreshing sleep and inability to exercise. The fatigue is often accompanied by flu-like symptoms such as pain in the joints and muscles, tender lymph nodes, sore throat, poor temperature control and headache.
A distinctive characteristic of the illness is post-exertional malaise — a worsening of symptoms following physical or mental exertion occurring within 12 to 48 hours of the exertion and requiring an extended recovery period. The neurocognitive symptoms often affect the ability to work or study. The physical symptoms make it hard to undertake physical work.
For Kay Copley, M.E., has defined her life for over three decades. At 38, she started to experience symptoms. “I began to feel exhausted and more and more found I couldn’t walk. My legs were like concrete and I would be crying trying to walk from the kitchen to put the meal on the table,” she said. “I was very lucky in one sense that I had a wonderful GP who really believed in me. After about a year of going to him and saying there was something terribly wrong with me he put two and two together and realised that what this doctor had seen in Tapanui with several of his patients was exactly what I was describing to him.”
With three young children, Kay took to her bed for six months before her husband Robin had to resign his role as deputy principal of a primary school, and take over managing the household. “It broke my heart that I was not able to be the mother I wanted to be,” said Kay.
“My absolute decision was that my children should not suffer because of having an ill mother. I always felt comforted by the fact that I could still comfort and encourage them from my bedroom and others could do the physical work. But people did not understand the illness. No one understood M.E., and Robin and I were left to somehow get through on our own. We lost most of our old friends. We were unable, of course, to have any social life whatsoever… and actually we had no support.”
When Kay and Robin visited Wanaka, a friend suggested the gentle walk to the Blue Pools at Makarora — normally a feasible stroll for toddlers and octogenarians. “I didn’t say anything because people find it hard to believe you, but I can’t walk that far or that much.”
For Urquhart, his family has been a rock of support. “They have been really supportive,” he said. “I don’t know where I’d be without my family.” But like Kay, Urquhart is missing out on life. “I’d like to travel, plant trees on my dad’s land, and just live. Even when I’m not in a crash state my nervous system is so sensitive, I can’t handle much stimulation but when i'm in a crash everything’s just too much. Crash states are getting less, but it was every couple of weeks. A crash can last from a few days to a couple of weeks then you start slowly getting out of it.”
For now, Urquhart’s message is simply to be left alone, and to please stop being accused of being a freedom camper. He sets up a mattress with a pillow on the lake to help cope with cabin fever, as well as to get the benefits of being in fresh air and direct sunlight. Urquhart is working on his recovery and participating in a variety of support groups and programmes with an optimistic view that this too, will end.
For local support, contact Association of New Zealand Myalgic Encephalopathy Societies at anzmes.org.nz.