Poems tell Jan’s health story
Jan Hill doesn’t usually tell people about her health condition, as she doesn’t want to be known by her disability.
Instead, the Geraldine poet and author has based some of her work on ME (myalgic encephalomyelitis/chronic fatigue syndrome) to raise awareness and understanding of her condition.
To mark ME/CFS International Awareness Day tomorrow, Hill has decided to share her story so other people can understand how debilitating it is for those like her suffering with the condition.
ME, also known as CFS, is a chronic, multi-system disease that affects the neurological, immune, endocrine and energy metabolism systems, according to m.e.awareness.nz.
‘‘I have been one of the lucky ones. I have been able to live a ‘normal life’, albeit not in paid work,’’ Hill said.
Hill has had ME since she was at university in 1970 studying to be a teacher but was not diagnosed until 1986.
In the interim, medical professionals became exasperated with her as they could see nothing wrong, she said.
‘‘My flatmate [at university] fell ill with glandular fever, was diagnosed, went home, got looked after, recovered.
‘‘I had something similar but my tests were inconclusive. When I was in bed, I felt OK-ish. Maybe slightly feverish. If I tried to go out anywhere, I would find myself stranded, totally incapacitated and confused.’’
She said that often when sufferers mentioned they were tired, other people said they were too but they had the weekend to sleep in and regenerate while the sufferer did not get a reprieve, no matter how much rest they had.
Hill describes it as like having the ‘flu but not recovering. ‘‘People think you’ll get over it, and they can’t understand why you don’t. They think it’s all in your head.’’
In her early 20s Hill worked at a small mission school in
Lebanon and could not manage a school ski trip after walking 30 minutes to pick up skis the day before. ‘‘I had used up all my energy.’’
Later, she managed to work as a teacher back in New Zealand by resting totally ‘‘every weekend, half-term and holiday’’.
After her first child and back at work after maternity leave, her condition worsened.
‘‘It seemed like every day was climbing Everest. It was easier for me to drop my son off at nursery and go in to teach, sitting at my desk, though I was unable to climb the stairs to the staffroom for coffee, than to look after him at home.
‘‘Eventually I had to resign as my legs just wouldn’t go. I loved my job: I never went back.’’
Despite health setbacks, Hill has published two poetry anthologies and written poems on her health, and a series of children’s books on Magnus and the Maungati Mouse.
Associated New Zealand ME Society (ANZMES) president Heather Wilson said about 25,000 people in New Zealand suffered with ME/CFS, ranging from preschoolers onward and in all socio-economic levels.
‘‘Some people keep themselves very private but all awareness on ME/CFS is really important and helps educate the community,’’ Wilson said.
She said there was a lot of biological research still being undertaken with Otago University researchers finding disturbed autoimmune functions and neuro inflammation.
‘‘There are a lot of treatments available. It would be nice to have a cure.’’
Hill has written a number of poems on ME to raise awareness and understanding, this is one of them:
It is like having the ‘flu. ‘‘People think you’ll get over it, and they can’t understand why you don’t. They think it’s all in your head.’’ Jan Hill
Old before my Time
I’ve got a clever virus and everywhere I go, people say ‘‘How are you?’’ but really don’t want to know. They seek a cheerful answer, they say I’m looking good. And so I smile and say ‘‘I’m fine.’’ Just old before my time.