From the Weston and Somerset Mercury, 30 October 2009.
We’ve all had those mornings on which we would choose to stay in bed. But imagine being so tired for every hour of every day that staying awake becomes a struggle, and you may just get an idea of what life is like for Stephanie Spearing.
At nine-years-old she should be enjoying all the things normal children that age do.
But a chronic fatigue syndrome called myalgic encephalomyelitis, more commonly known as ME, means that instead of swimming, ballet and tap, the Nailsea youngster spends much of every day asleep, or when she is awake, in pain.
The ME Association estimates around 250,000 people in the UK are affected by the illness, which can cause severe and debilitating fatigue, painful joints and muscles, disordered sleep, gastric problems, and poor memory and concentration. The immune system is also affected. It can affect anyone at any age, although cases in children as young as Stephanie are rare.
Lives turned upside down
Stephanie and her parents, Suzanne and Pete, 39, are keen to raise awareness about the condition, and help others understand just how much all their lives have been turned upside down.
Suzanne, 38, said: "From an early age Stephanie had always had skin problems.
"She had a severe dose of chicken pox at the age of four, was referred to Bristol Children’s hospital and found to have excess bacteria in her body.
"This took two attempts of treatment to clear."
Over a three-year period she also suffered eye and ear infections.
Then in October 2007, aged seven, she suffered an ear infection. Over the next three months, she suffered another five skin and ear infections.
This was followed by a bacteria infection and, despite prolonged antibiotics, she was in constant pain, itching, stinging and had burning sensations up and down her entire body every night. Suzanne said: "For more than three months she was awake at night with pain and then was exhausted all day."
She was referred to Great Ormond Street Hospital in London for tests on her immune system, and then urgently had her tonsils and adenoids removed.
Stephanie had severe reactions to chemicals such as perfume, giving her migraines.
In June 2008 she returned to Kingshill Primary School part-time after nearly a full academic year out of school, but within a month she was off again, suffering with severe headaches.
Suzanne said: "In the August she got a sore throat and was extremely tired. Any exercise caused extreme fatigue and malaise, so we thought it was very bad asthma."
Stephanie then got another ear infection and is still recovering from that a year on.
She was eventually admitted to Bristol Children’s Hospital for specialist tests in October 2008, after suffering prolonged chronic jaw pain but no conclusive explanation could be found.
Other problems then developed, including an adversity to light, which caused more severe headaches, and noise. Certain smells would make her feel nauseous or cause rashes, and she had extreme reactions to cold or heat.
But in November there was a breakthrough. Despite regular admittance to hospital, it was the family’s GP, Dr Backhouse, at Tower House Medical Centre in Nailsea, who diagnosed Stephanie as having ME.
In December, Stephanie developed extreme pain in her muscles and elbow, wrist and ankle joints. It got so bad she was unable to walk and was given a wheelchair, which allowed her to spend a few days at Disneyland Paris over the Christmas period – something she enjoyed despite being too ill to go on any of the rides.
But 2009 has been a better year for the family and although there is no medication for the illness, Stephanie is learning to live with it and is even gradually starting to do some low-level activity.
She still suffers from some of the symptoms before diagnosis and has some brain dysfunction.
Although she isn’t well enough to return to school and realistically won’t be for years to come, she now has home tuition three or four times a week depending on how well she feels, in between long rests.
Stephanie said: "I do miss all my friends from school and I do get angry and anxious sometimes. But I have found out from my home tuition that I am good at art and that makes me happy."
The family have also found invaluable support from Somerset Group AYME – an association that supports young people with ME. Suzanne said: "This illness has had a devastating impact on our lives."