JOEL MAXWELL – Dominion Post 14 May 2016
Michael Turner, 18, has been tired his entire life: even sleep is exhausting. Just don’t tell him he’s lazy.
Each day at home, before he starts his lessons, he does gentle exercises such as kung fu stretches to help beat the “heavy gravity, heavy pain” bearing down on his body.
Turner has become the young face of chronic fatigue, speaking out on Friday to help people understand why he’s not just a lazy teen, and to help other teens with his condition.
The pain kicked in through his body from the age of 10.
“I knew something was up, and that’s when doctors did many tests. All the tests known to mankind basically.”
The diagnosis was eventually fibromyalgia, a disorder that causes pain in muscles and around joints, exhaustion and concentration problems.
Michael Turner, with dog Softy, now studies from home after a diagnosis of fibromyalgia.
“I do sleep a lot, but unfortunately that sleep is not a deep sleep, so I still get tired from that.”
Last year he stopped studying at school, where his condition was not understood. He said school life pushed him so hard that he couldn’t cope with the pain and exhaustion.
He started learning from home on the Kapiti Coast, through correspondence school, which was more flexible.
On a normal school day he’ll get up around nine, have breakfast and then gradually get into his school work. He’s leaning towards a career in IT or web development.
“Unfortunately when you talk [to people] about the problem, they do believe you, it’s just they don’t take it seriously.”
People with the disorder might seem lazy, he said, but that was not because they wanted to be.
“If you had the same condition you would be taking it easy, because of the pain. We’re listening to our bodies, instead of breaking them.”
Turner said he wanted to help other young people with a similar diagnosis connect with support groups like WellMe in the region.
Dad Darryl Turner said the process of gaining a diagnosis, which took years, was a “real journey” for their family.
He, mum Gundy Turner and their son had to use teamwork to get through the challenge.
“It’s very tough to see a child in pain, and with fatigue issues all the time. Waking up tired and foggy.”
Sandra Forsyth, vice-chairwoman ofWellMe, said fibromyalgia was one of a group of overlapping auto-immune disorders including chronic fatigue syndrome, which was now called ME/CFS.
“Chronic fatigue is not just being tired but absolutely bone-numbingly exhausted. For those who run or swim or train vigorously it is akin to that feeling of lactic buildup and exhaustion that follows a huge training session.”
New Zealand expert Rosamund Vallings said ME/CFS was usually triggered by viral illnesses such as the flu or glandular fever.
That set off abnormalities in the immune system, which produced “a whole lot of chemicals and hormones which cause all the symptoms, including extreme fatigue”.
Chronic fatigue was “a big issue” for young people, she said, with some data suggesting as many as one in 100 were affected after catching common teen disease glandular fever.
“The rate generally for the population at large is four per thousand … but it is definitely more common in young people.”
Sandra Forsyth said most people found chronic fatigue-inducing diseases rendered them invisible to friends and the wider community, “as they lack the energy to participate in everyday life”.
“This social isolation is very real and support can be hard to obtain.”
WellMe, has branches throughout the Wellington region.
If you, or your child has Fibromyalgia or ME/Chronic Fatigue Syndrome and would like to speak with one of our Community Support Coordinators, call free:
0800 632 847 (Claire – Wellington Region)
0800 600 113 (Judy – Horowhenua)
Donate to WellMe and support the 2000 + people living in the Wellington/Horowhenua Region with ME/CFS & Fibromyalgia.
Account name: Wellington Region ME/CFS Support Group Group Inc
Account number: 03-0521-0243307-00