Rebecca Cumming spends her days in bed, living in darkness and near silence, unable to have any conversation.
It’s a stark change from a year ago, when the now-22-year-old had just finished university, scored a new job and spent her spare time tramping, cycling and running.
Rebecca has Myalgic Encephalamyelitis (ME), also known as Chronic Fatigue Syndrome (ME/CFS) – and is at the very severe end of the spectrum.
She was a dancer, an explorer and a thrill-seeker – an “adventurous go-getter with a zest for life”, her family said. She had lived abroad in Argentina, becoming fluent in Spanish, before returning to New Zealand to complete a degree in psychology.
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But at the end of February last year, Rebecca got Covid-19 while living in Dunedin and struggled to bounce back.
At first, she had difficulty getting through the working day. She had just started a new job as a community support worker, but struggled to concentrate, suffering brain-fog, fatigue and frequent migraines.
Day-to-day activities like grocery shopping or cooking became too hard and eventually, in June, she had to move home to Christchurch to live with her parents.
Rebecca’s health continued to deteriorate. Showering became too tiring, she was walking less, and eventually she lost the use of her arms.
By Christmas, she couldn’t leave her bed.
Now, any light, noise or touch causes her extreme distress. Any communication from her comes in nods or simple one word answers.
Her family grieve her loss, but say she is still here, “literally existing”.
“You would wonder, as a human being, how does she cope? She’s horizontal on a bed all day and night with eye shades on, no other stimulation. What do you think of? How do you cope with your emotions?” said her dad Wayne Cumming, a former nurse..
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Her mum, Anne Cumming, is her primary caregiver, which has forced her to take an extended leave of absence from her job as a nurse at Pegasus Health.
“It’s like a grief. I just feel very sad that she’s only 22, and she can’t live her life. We don’t know what the future holds for her,” she said.
“It’s a horrible life. I find it really devastating, it’s like you’ve lost someone. It’s completely changed our family, we just miss her.”
Not a lot is known about the illness, including what causes it and how to treat it. The Cumming family have found it hard to find information on it.
Otago University Emeritus professor and molecular biologist Warren Tate said the symptoms for long-Covid could be “almost identical” to ME/CFS.
“We’re seeing the same immune cell protein signature in long-Covid that we’ve characterised with ME/CFS,” he said.
Tate’s research into ME/CFS is personal, after his daughter was diagnosed with the condition when she was aged 14.
During his years of research, he had heard of only two others who had it as severely as Rebecca.
Tate said he estimated there were about 45,000 cases of ME/CFS in New Zealand, but said internationally only about 1% or 2% would be as serious a case as Rebecca’s.
Sufferers had been called “the missing millions” and more needed to be done about the lack of education and understanding of the illness in New Zealand, Tate said.
Rebecca and her older sister Grace Cumming, also a nurse, grew up doing everything together.
“I think having a sister is like having a best friend that brings out a special side of you. There’s so much in life that I’d like to share with her and I just can’t now.
“That’s what’s been the hardest because she’s still here, but she’s not the sister that I’m used to having. She can’t be what she used to be.”
The family of nurses has been praised by a dietician, and other medical professionals, for how well they have cared for Rebecca’s needs.
They have researched how to meet her nutritional needs with being able to only drink liquid foods through a straw. She is fed small and often eight to nine times a day. But despite their best efforts, she continues to lose weight, and is still not getting enough nutrition, Wayne said.
“She’s got to such a low point, she can’t really go much lower,” he said.
The family have been told to prepare for Rebecca needing hospital admission for a feeding tube.
Adam Trotter has had chronic fatigue syndrome for the past three years and has found there is little to no help available to him or his family.
But Tate said the movement, noise and light of the hospital would be extremely distressing for her, “like a torture chamber”.
The family are looking into getting the resources they need to continue Rebecca’s care at home, but have also started to consider respite care.
With Anne Cumming having to stop work and Rebecca only qualifying for 21 hours a week of funding from Te Whatu Ora for her care – with only 11 of those hours provided due to the shortage in healthcare workers – the financial pressure was weighing on the family.
To be eligible for funding from the Ministry of Health, they were told a person needed to have a physical, sensory or intellectual disability.
“Surely our daughter has a sensory disability – she’s in a darkened room with eye shades on and ear plugs in all day,” Wayne Cumming said.
A Givealittle page has been set up to help with additional caregiver support, medication that is not funded (low dose naltrexone), and equipment that helps with her extreme sensitivity to light, sound and touch.
”The support from others is what got us through, without that we wouldn’t have survived,” Anne Cumming said.
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