Waking up tired and in pain
Anna Featherstone-Wright will forever remember September 10, 2016.
‘‘I was walking either to or from school, and there was this pain in the right side of my abdomen. Since then, it has spread through my whole body.’’
The 16-year-old Wellington Girls’ College student lives with myalgic encephalomyelitis (ME), known by some as chronic fatigue syndrome.
‘‘It occasionally feels like there is a bubble inside you that feels like it’s blowing up ... that it’s pushing all the other stuff.’’
She is a keen reader who already has half-a-dozen languages under her belt. Yet these days, the debilitating disease means just holding a book can give her sore wrists.
‘‘I wake up tired and I wake up in pain. This basically means that I have trouble walking, I have trouble writing, I have trouble doing all the things that I would have done when I was healthy,’’ she said.
‘‘I typically go to school for about an hour, maybe two sometimes, each day and then I have to come home and rest. I spend a good deal of time resting and it’s never enough.’’
Myalgic encephalomyelitis is defined as a substantial impairment in activity that lasts six months or more.
It is accompanied by fatigue, post-exertional malaise, unrefreshing sleep, and either cognitive impairment or orthostatic intolerance.
It is feeling constantly lethargic and aching.
About 20,000 Kiwis have it, but many cases go undiagnosed.
‘‘If I were walking, I’d probably be able to get to the end of the block, but getting back I’d probably have to be supported or carried,’’ Featherstone-Wright said.
‘‘At that point, [I’d] start to have a lot of difficulties, not just with pain but with mental functioning. Even going around in the wheelchair, even when I’m being pushed, it’s still more tiring than walking was when I was healthy.’’
Featherstone-Wright’s diagnosis was delayed after she was found to have celiac disease.
‘‘With a lot of that it was doctors telling me that I just had anxiety or that I just needed to have a bit of fun in the weekend and I’d be all right,’’ she said.
Her mum and caregiver, Sam Featherstone has co-founded an online support group. A screening of the film Unrest has been arranged in Wellington for May 10, ahead of a global awareness day on May 12.
‘‘It was doctors telling me that I just had anxiety or that I just needed to have a bit of fun ... ’’ Anna Feather stone Wright