Since her diagnosis, Shannon's symptoms have continued to evolve, making it harder for those around her to recognise the signs of relapse, and harder to predict. Now at the age of 10, Shannon's M.E is classified as moderate and it is estimated she has nine and a half hours of energy to use on an average day. However, she still experiences relapses and suffers from vomiting, headaches, pain throughout her body and flu-like symptoms.
Getting a diagnosis of M.E was a long, laborious ordeal which took 3 years of trips to the doctors and the hospital for MRI scans and never-ending blood tests. The more the tests came back clear, the more confusing and concerning it became for the family, not having any answers. Baffled doctors turned down a psychological route, suggesting Shannon was pretending, until her eventual diagnosis at Bath hospital.
Due to the mystery and complexity of this illness, many misunderstandings and myths have become rooted in common belief. The biggest of these beliefs is that M.E does not exist. Often M.E is simplistically associated with severe fatigue, so the multitude and severity of symptoms go unacknowledged.
One of the hardest things the family have had to come to terms with is the loss of normality at the hands of M.E. The unpredictability of the illness makes planning an impossibility, not knowing when it will next strike. Everything has to be taken day by day, and planned according to how well Shannon appears. For every 30 minutes of high energy activity Shannon does, she has to compensate with 30 minutes of resting.
Colouring is a low energy activity, whereas drawing would be high energy due to larger cognitive demands. Watching TV also exhausts Shannon's energy resources, unless it is something she has seen many times before. The family have to constantly think of every activity in terms of energy usage. Every day is a struggle to get the balance between keeping Shannon healthy, but not letting the M.E completely take over her childhood.