When ‘the horrible monster’ called on Kaye

Kaye Dickson (right) and her rock, Mum Bev. “She fought for me and supported me.”

“Yeah, yeah, we know that.”

Bev Dickson has just been reminded of some desperately dark times in her daughter’s 30-year struggle with ME, myalgic encephalomyelitis or chronic fatigue syndrome.

Wretched times that took daughter Kaye, right to the brink. Bev doesn’t really want to go back there. The head goes down.

 “You have to understand that 30 years ago we went to a doctor who hinted Kaye had Tapanui Flu,” says Bev. Colloquially called Tapanui flu after a cluster of people in the Otago town suffered debilitating fatigue in the 1988s, it wasn’t recognised as a genuine medical condition. “The doctor hinted, but wouldn’t acknowledge she had it,” says Bev. “He wouldn’t diagnose it. He was frightened to.”

And it caused confusion, frustration and fear for both mother and daughter. “It got very close,” admits Kaye. “And I am certain that had it not been for my parents, I would not be here today.” She had been considering a way out.

 Bev nods. She knew about it. “You just wish the ME would go away.” The ‘horrible monster’ she calls it. “But at the same time we have always been here for Kaye.”

Bev’s role changed forever in 1989. The mother to a bubbly, carefree spirit suddenly became a carer when Kaye got glandular fever – often viruses are precursors to chronic fatigue syndrome.

“I just remember being in bed for a very long time and being very tired,” says Kaye.

A procession of doctors, alternative health professionals, counsellors and psychiatrists couldn’t tell a Mum why her delightful, promising 14-year-old was suddenly dysfunctional, why she couldn’t break out of the foetal position in front of TV, or climb out of bed and get on with life. “It made me so sad. I would see a kid on a bike and I would wish that was my Kaye on that bike.”

“I just needed to be in bed,” explains Kaye. “I didn’t need to put one foot in front of the other.” She’s revealing the very intimate detail of a three-decade wrestle with “the horrible monster” to promote understanding. It’s ME/CFS Awareness Day next month.

Like any illness there’s a continuum of severity with chronic fatigue syndrome or ME - some patients are bedbound, others are able to function day-to-day. But research shows it impacts people’s lives as severely as Parkinson’s and multiple sclerosis.

There’s the frustration. “You see people getting on with their lives, growing a career, getting married and having children, and overseas travel,” says Kaye. And there’s the isolation. “I lost a lot of friends. They couldn’t understand what was wrong and why I wasn’t getting better. Can you come out and do this and do that. But I was too ill and they lost interest.”

Mother Bev also talks of frustration. “We wonder what’s going to emerge from her bedroom in the morning, what’s Kay going to be like, and if she is good, for how long will she be good?”

There’s also suspicion. “If people can’t see a bandage or you don’t look sick, then you can’t be sick,” says Kaye. “They will never see the sick Kaye Dickson, because if she is sick she is at home, under the duvet, out of sight. She is at home and hiding.”

And with 30 years’ experience of ME, she is pretty good at faking looking good, faking looking well. ”I can turn on a smile and sell myself. But you can only do that for so long before you crumble.”

Was she faking it when The Weekend Sun arrived this week?  She presented as elegant, effervescent, articulate and laughing along. “But the day before I spent six hours in bed – tired, headachy and muscle pain.” Or perhaps she was energy banking. “Depending on how much energy you think you might need for an event or activity, you have rest-ups or sleeps the day before.” Energy banking.

And she measures her days in ‘spoonfuls’. Kaye might wake feeling like she has 12 spoons in the tank. Then she will use two spoons of energy for a shower and allocate the rest for various activities. MER controls all day and every day and the profound fatigue is not relieved by rest.

Chronic fatigue syndrome hasn’t destroyed Kaye Dickson’s life but it has severely compromised it. It’s made a career difficult and relationships difficult. Kaye’s now 44 and still living at home with her parents. “I can get so sick I can’t look after myself. I need them.”

‘Them’ – Bev and husband Avon have learned and adapted. “One day at a time,” says Bev. So far it’s been 30 years, one day at a time. “Yes, you have to do that.”

And so much of their lives have centered around Kaye – they can’t turn on the vacuum cleaner because Kaye’s asleep, no painting or motor mower because she’s sensitive to the fumes, and no plans for tomorrow until it is known how Kaye’s feeling. “So we would say it’s not just Kaye that has the syndrome, the whole family has got it, everyone is impacted,” says Bev. “And it’s always there, it’s always controlling us.”

She studied part-time; information technology and a legal executive certificate. But a relapse meant  time off – two years’ time off. That’s how the insidious ME can be, how it can eat into a life. Eventually she volunteered at an op shop and there was nannying. That’s another regret that caused some grieving.

“Children were not on the agenda for me. So you grieve. At the beginning there is a major grief mountain. Later you return to the issue and touch that grief again, but it’s not quite as bad.”

One thing seriously tests Bev and that’s when she is explaining the syndrome to people. “Rather than bamboozle people with detail, I simply tell them Kaye gets tired. They always say they get tired too. Well, yeah right!” Because if normal people get tired, they sleep and are re-charged. They are not tired for 30 years.

While Kaye continues to deal with the wiles of the “horrible monster” ME  - the loss of sleep and concentration, the night sweats, and the hair loss, the mental and physical stress, Bev has some advice to other ME mums. “Follow your motherly instincts. There have been many occasions on which I have been given advice. But deep inside I knew it wasn’t right.

International ME/CFS Awareness Day falls on Sunday, May 12. It’s about promoting a greater understanding. Dr Corin Storkey is one of New Zealand’s leading health experts  on CFS with more than  eight years clinical research experience and his own personal experience with the syndrome.

He will be talking about preventing, managing and overcoming CFS at St Enoch’s Church lounge in 16th Avenue on Saturday May 4 between 10.30am and 12.30pm.

And one day when Kaye Dickson has finally tamed “the horrible monster” she dreams of being independent and earning a paycheck. She believes it’s a realistic dream.