Brave Upwell teenager Annie Fowler speaks out to raise awareness of ME
An Upwell teenager has spoken out about her fight with a debilitating illness that has left her on daily medication and with no energy.
Annie Fowler, 15, has ME (Myalgic Encephalomyelitis) a chronic fluctuating neurological condition which affects around 20,000 young people in the UK.
She is sharing her story as part of Action for ME’s 2018 ME Awareness Month campaign, This is ME.
Annie said: “Before ME I was fun, I was bubbly and I felt normal. I wasn’t consistently worried about doing too much, I didn’t have to take medication every day to help my symptoms, or explain to my friends why I couldn’t do something.
“I knew that the possibilities for me were endless and I could do anything I wanted. I had my whole future planned out. But now it’s not as clear.”
One of the most common issues of ME is long-term school absence. It can affect anyone, of any age, at any time – and in different ways. Even in its so-called mildest form, ME changes the lives of everyone it affects, and not just their health.
“Life is very different now,” explains Annie. “I can’t do as much as I used to, I constantly have to watch what I do. I don’t have an appetite like I did.
“I never feel like myself, and other people notice that too. There are odd days when I feel like myself and sound more like myself, but it never lasts as long as I want it to.”
People with ME experience severe, persistent, fatigue – very different from ordinary tiredness, associated with post-exertional malaise, the body and brain’s inability to recover after expending even small amounts of energy.
This leads to a flare-up in symptoms including chronic pain, difficulties with concentration, thinking and memory (known as ‘brain fog’) and problems with the nervous and digestive system.
Annie said: “The symptoms are just uncontrollable some days. When I’m at my worst I don’t move, I don’t eat, I sleep for days and my room is always dark because I can’t cope with the light.
“The toughest thing is not being able to control when the symptoms occur because it varies so much from day-to -day, hour to hour.
“This makes doing everyday things very difficult as you never know what may change or if you’re going to be able to carry on doing what you’re doing – whether that be shopping, cooking, or even just sitting with family.
“It makes you feel so isolated because you can’t do the everyday things and feel normal.”
A lack of understanding and awareness about the illness means children and adults affected by ME can experience disbelief and discrimination from employers, colleagues, teachers, health and social care professionals and even friends and family.
“Some of my friends just think I’m lazy and tired all the time, which frustrates me a lot because that’s not what it is at all,” she said
One-in-four people with ME are so severely affected they remain housebound. There is currently no specific test to detect ME and no pharmacological cure.
Annie hopes she will be able to lead a normal life, one day.
“My mum is a massive help, she makes sure I do everything I can to help myself get better.
“She always believes in me, that I will recover, even if it’s not 100 per cent, and that I will do everything I want to in my life,” said Annie.