IMAGINE, after a great celebration at your child’s confirmation, that he comes down with a mysterious illness that knocks him for six. Zapped of energy, he grinds to a halt, stopped in his tracks before he is a teenager.
This is what happened to Roan Spillane, 15, from Midleton, who suffers from Chronic Fatigue Syndrome, also known as ME, Myalgic Encephalomyelitis.
The condition has a long history of identity crisis. There are no diagnostic procedures or physical findings that define it, only a collection of symptoms.
“Roan was never sick,” says his mum Yvonne Brewer Spillane.
“He only went to the doctor when he was a baby to get his vaccinations. For weeks after his confirmation, Roan had a chest infection, and he had terrible fatigue that affected the movement in his arms and legs.”
This was detrimental to the sports- mad young lad, who loved playing hurling and who followed Cork hurling and GAA religiously.
“Roan had started going to the boxing club, he loved being active and being involved in lots of sports.”
When he was struck down, rendered helpless, his parents were really worried. “The doctor said he could be suffering from a virus that would take its course,” says Yvonne.
“Roan was prescribed antibiotics for the chest infection, but when he couldn’t move his arms or walk properly, he spent five days in hospital.”
There was no definitive diagnosis.
“It was established that Roan’s condition wasn’t life-threatening,” says Yvonne.
“His blood tests were clear, ruling out serious diseases, which was a great relief to us.”
But the family were none the wiser. “He was tired all the time,” his mum said.
Yvonne got tired of explaining why her son was so lethargic and so lifeless.
“I got asked; what’s wrong with him?
“Or; he’s a typical teenager, lazing about with no interest in anything. Or; it’s all in his head’. It got very wearing,” says Yvonne.
Roan recovered slowly after being in hospital, but he suffered continuous setbacks.
“He’d pick up, and go straight back hurling,” says Yvonne.
“But because he was so susceptible to any bug, cough or cold, he’d go downhill again for weeks. He never was fully better.”
Roan, with a positive disposition, bravely tried to bounce back; a typical teen, he didn’t worry unduly about his lack of energy.
But his parents did worry.
“We were constantly at the doctor’s looking for answers,” says Yvonne.
Everybody was still in the dark regarding Roan’s mysterious condition.
“We were referred to a neurologist in CUH and a paediatric consultant in CUH. There was no mention of ME, only always that it could be a virus. Roan was told to take things easy.”
He had no choice.
“It came to a point where he hadn’t the energy to go to school,” says Yvonne.
“He wanted to, but he just wasn’t able. Going to school took so much out of him. CBS Midleton were really understanding and a great support to us. Roan could continue his studies when he was well enough.”
Yvonne did some studying of her own.
“When you have a sick child, you have to be a good parent,” says Yvonne.
“I realised Roan needed rest, complete rest.
“I knew in my gut that something was badly wrong. It was frustrating not knowing what it was.”
Roan, wiped out from aches and pains that squeezed his arms and legs, shackled by a condition nobody understood, didn’t want to be a spectator while his friends sported and played.
“He tried to go back playing hurling last summer and he tried going back to school,” says Yvonne.
“During the heatwave of last year, Roan was extremely tired. He pushed himself too hard playing hurling. After less than a week, getting up early for school, he had to give up. He became virtually housebound trying to manage his energy levels. He played the guitar, but had to give it up.”
He put on a brave face.
“Roan was great to cope,” says Yvonne.
“He’d put a smile on his face and say, I’m OK. I’m grand.”
The pattern repeated itself. Roan rallied when he could but there was the unrelenting oppressive fatigue nagging him every waking hour.
“He slept for between 12 and 20 hours every day. Getting up, showering and dressing was exhausting for him.”
Yvonne got used to the taunts.
“He’s just lazy. He’s spoilt.”
Yvonne must have felt helpless too?
“The emotional side took its toll too,” says Yvonne.
“But you stay motivated for your sick child. As a family, we couldn’t go places anymore, or go on holidays. Me or Ger, my husband, had to be at home all the time with Roan. We’re worried he might fall, he’s so wobbly on his feet. He gets dizzy spells.”
It could be isolating.
“I’m from Offaly originally and Ger is from Tipperary, our extended family live far away,” says Yvonne.
“We have loads of friends but some people didn’t contact us anymore. They left us alone with the ‘mystery’ illness.”
“Eventually the GP evaluated all Roan’s symptoms. He saw him going downhill, and we were given the diagnosis of ME last September,” says Yvonne.
“It took three years to get the diagnosis.”
But Yvonne wasted no time in getting support.
“There is no treatment, no cure, or no consultant in Ireland for ME,” says Yvonne.
But there was an ME Society based in Dublin.
Yvonne sought them out, getting in touch with other parents of children with ME.
“I identified with another parent, Tom, the same age as me, 46, who had a son 16, with ME, who was completely housebound, not even able to go upstairs. Tom, who has done extensive research on ME, provided great support and further information for us. I joined the ME/CFS Association as a member volunteer,” says Yvonne.
Things started looking up.
“I was thrilled with the large attendance at the information talk given by International ME expert, Dr Ros Vallings at Clayton Silver Springs,” says Yvonne.
“Roan made it to the talk, which was fantastic for him. He could talk to other people who had the same symptoms as he had.
“Raising awareness of the condition and the value of meetings for those living with the condition is so important.”
What is life like now for the Midleton family?“We’ve learnt how to managewith Roan’s ME. We know his limitations and recognise he must take things easy. He has 10 different symptoms and says, is there any part of me not sore? A new consultant in the Mercy Hospital took Roan on a month ago, concentrating on his endocrine system which is a positive step.”
Yvonne says ME is a misunderstood illness. And it is an invisible one.
“Doctors don’t seem to take the illness seriously,” says Yvonne.
“When you finally get the ME diagnosis, then that’s it.
“There is no follow up. In the future, I’d love things to improve in the health system here, having an ME consultant or chronic illness clinic so you’re not years waiting for a diagnosis. There is a long way to go.”
Other parents who suffer the stress of children with ME now have a go-to organisation they can avail of.
“New members can contact the ME/CFS Association, or they can contact me,” says Yvonne.
“Often, a number of us meet up so we can support each other. In the beginning parents who have children with ME can be left struggling in the dark like we were.”
Finding others who understand is vital.
“Having a support network is huge,” says Yvonne. “You know, I do what every parent is doing, supporting their child.
“OK, I don’t go here and there for coffee with friends much, but that’s OK too. We have a good outlook and now I can support people in the same boat as us.”
And there’s a summer hurling season coming up featuring Cork, Tipperary and Offaly that will keep Roan happy.
“He is positive and he will soldier on and get to play his hurling matches again,” says Yvonne. “That’s his dream.”
SUPPORT IS AT HAND
Around 14,000 people in Ireland are thought to suffer from ME/CFS.
A particular feature of the disease is that the condition waxes and wanes over time and symptoms can fluctuate a great deal from day to day, or even within a day.
The Irish ME/CFS Association is a national all-volunteer organisation committed to helping all those affected by ME/CFS, not just sufferers but also their carers and families. It seeks to promote greater understanding and awareness of ME/CFS in the general public, medical profession and related services. It is run entirely by volunteers. Membership is €20 per year. Members receive a quarterly newsletter with up to date information on ME research, tips on coping with ME/CFS, as well as informing them about current activities of the association.
A free information pack and membership form can be sent to all enquirers. Call 01-2350965 or email firstname.lastname@example.org or write to 12 Beechpark Lawn, Dublin 15.
Contact Yvonne Brewer Spillane: email@example.com