A mother has spoken about the stress and fear of raising a teenager who suffers from Chronic Fatigue Syndrome, a condition that will accompany him for the rest of his life.
Jen Temm, 53, of Chatswood, Sydney, has a 15-year-old son, Luke, and for the last five years she has been constantly in a bad way, and in a heartbreaking way there is no end in sight.
"Luke got sick for the first time when he was 10 years old," Ms. Temm recalled. & # 39; Caught a winter flu that never seemed to clear up. & # 39;
"First we took it to our usual family doctor and she thought it was an unpleasant viral infection, and told us to let it rest."
Luke Anderson became ill for the first time with flu symptoms when he was 10 years old (picture of Luke, 12 years old)
Jen Temm (in the picture with Luke) said that when her son got sick for the first time, they took him to the family doctor, who thought he was suffering from an unpleasant viral infection.
But Luke did not improve and his symptoms continued to worsen.
"We examined the blood samples and we saw an immunologist," Temm told FEMAIL.
"In the end, they told us that he had" some type of post-viral fatigue "and that it was not serious because there were no problems with his blood."
Ms. Temm also revealed that the doctors advised her son to "grow up."
The family spent two years visiting doctors and immunologists in an attempt to discover what was wrong with their son.
Before his official diagnosis, the specialists also told him to try to make an effort to "normalize" Luke's sleeping patterns.
What is chronic fatigue syndrome?
Chronic fatigue syndrome (CFS) is a complicated disorder characterized by extreme fatigue that can not be explained by any underlying medical condition. Fatigue can get worse with physical or mental activity, but it does not improve with rest.
This condition is also known as systemic stress intolerance disease (SEID) or myalgic encephalomyelitis (ME). Sometimes it is abbreviated as ME / CFS.
The cause of chronic fatigue syndrome is unknown, although there are many theories, ranging from viral infections to psychological stress. Some experts believe that chronic fatigue syndrome could be triggered by a combination of factors.
This meant forcing Luke to get up earlier in the day to push him through fatigue, as well as to make him go to school and exercise.
Unfortunately, this did not work, he said, and "trying to pick it up earlier and pushing it into a bigger activity made it much worse."
Luke's condition also began to affect his education: his symptoms lasted for weeks instead of days and his "good times" were shorter and less frequent.
When her son became ill for the first time, Ms. Temm said that her attendance at the school was reduced to around 80 percent; for Year 7 it had been reduced to 20 percent.
Making things even more difficult for the family was the fact that it took a couple of years to discover that Luke was suffering from myalgic encephalomyelitis, a condition also known as chronic fatigue syndrome.
"The doctors are not trained in ME / CFS in Australia and we were basically alone," he said.
"We went to the Internet, as you do, and finally we found good advocacy and health organizations dedicated to ME / CFS where we received useful advice to rest and never push Luke into more activity."
Making things even more difficult for the family was the fact that it took a couple of years to discover that Luke suffered from myalgic encephalomyelitis.
While Luke's condition is characterized by a series of different symptoms, the "distinctive symptom" of ME / CFS is post-exertional discomfort or PEM.
Ms. Temm explained that this is where Luke will crash. If you have done too much or if you have a cold or have another insect, your symptoms will increase so that they are tied to the bed, and this may last for several months.
Luke also experiences low blood pressure and a fluctuating heart rate, two problems that make it difficult for the 15-year-old to stand up or even feel right sometimes because he feels dizzy.
"One of the best tools we have learned is to use a heart rate monitor to keep Luke within his limited range of energy and not to discharge the battery to zero," said Temm.
When Luke fell ill for the first time, Ms. Temm said that her attendance at the school was reduced to around 80 percent; for year 7, it had been reduced to 20 percent.
The unpredictable nature of Luke's illness means that he has not been away from home for almost a year, a situation in which the "quiet" teen does everything he can to make it work.
He has friends who come to visit when he is well enough; does some distance studies; He loves music, games and art and writing is his passion.
What saddens me most is that at age 15, this has cost him more than a third of his life, so his defining experience at this time is his illness.
"He misses school and friendships and weird to be able to go out for a walk," said Temm.
"Now it's impossible to go to a friend's house, go to a party or just to his grandparents."
Mrs. Temm said that the family was "very lucky" because their son was such a naturally happy child, but as parents they struggled with how much he was losing.
"What saddens me the most is that at age 15, this has taken more than a third of his life, so his defining experience at this time is his illness.
"I hope we can change that as it grows, and find a bigger window to the world in search of their interests and studies."
Mrs. Temm said that the family was "very lucky" because her son was such a naturally happy child, but as parents, they fought for how much she was losing.
Ms. Temm is Luke's full-time caregiver. She left her job as a journalist and editor when he began to seriously decline in Year 7, a decision he called "obvious".
One of the big problems with ME / CFS is its uncertainty.
& # 39; As Lucas, there are good days and bad days for me. Being a caregiver for a child who can not leave home means that, indeed, I am too, "said Ms. Temm.
"Although I can go out and run errands now that it's a bit older, I do not like to be away for a long time and when it's really sick, I'm not going at all."
"So my life has also changed enormously."
Although Luke's illness will remain with him for life, he has a period in which he is more stable and his symptoms fluctuate less.
Ms. Temm said that while this is common around age five, it could also be the result of learning to better manage her illness, and possibly a combination of both.
"Our approach is to hope for the best: a cure, or that we can manage their symptoms so well that we see some improvement," said Temm (pictured, left with his family).
Unfortunately she revealed that one of the big problems with ME / CFS is her uncertainty.
"We do not know and nobody can tell us if Luke will get worse, better or stay the same," said Temm.
"Our approach is to hope for the best, a cure, or that we can manage their symptoms so well that we see some improvement, but also be pragmatic and plan for the worst should it get worse.
"Reality is always somewhere in the middle, that's all we know for sure."
For more information about ME / CFS, visit Emerging Australia