A teenager from Somerset has spoken about how a devastating illness left her bed bound and caused her to lose all of her friends and relationships.
Emily Forward, 17, of Taunton has M.E (myalgic encephalomyelitis), a neurological condition which causes extreme exhaustion, pain, brain fog, and a variety of other symptoms.
The chronic, fluctuating neurological condition affects thousands of young people in the UK, and is the most common cause of health-related long-term school absence.
Emily said she "struggles to remember what life was like" before she was diagnosed with M.E as her "brain fog has almost wiped my memory of anything before now".
She added: "I remember being quite active and having friends and still being at school.
"We used to go out on long journeys to lots of new and different places as a family, and go on walks with the dog.
"I remember being able to go out on my own."
"All my friends stopped speaking to me when I stopped going to school seven years ago."
People with M.E. 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 physical and mental 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.
"Now, I often struggle to make it out of my bed and downstairs, never mind out of the house", Emily added.
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"I was bedbound for over a year, which had an effect on my muscles.
"That, plus the chronic pain I have all over my body, mean I now struggle to walk.
"The brain fog is also really tough because it makes it really hard for me to do anything or talk to anyone, because I just can't remember how to do anything at all."
Simple physical or mental activities, or combinations of activities, can leave people with M.E. feeling utterly debilitated.
Emily said that while there are "rare days" she and her family can go out together, anywhere they go must be near home.
She said: "I have to use a wheelchair a lot to conserve my energy and because of my difficultly walking.
"I can't go out without having my mum, who is my main carer, there as well."
"I remember being quite active and having friends and still being at school. "We used to go out on long journeys to lots of new and different places as a family, and go on walks with the dog. "I remember being able to go out on my own." "All my friends stopped speaking to me when I stopped going to school seven years ago."
- Emily Forward, 17, talks about how her life was before she had M.E
The 17-year-old says the main problem of M.E is its fluctuating nature of the symptoms where she may not know how she will feel in the next hour or day.
Many people with M.E. are not able to predict how they will feel from one day, or even one hour, to the next.
"The toughest thing is the lack of consistency and not knowing whether what you're doing will affect you," says Emily.
"If I could change one thing, I would change the people that think they understand how you feel because they've 'been really tired this week' or they 'haven't slept well either,' while I'm sat there thinking 'you have no idea how much I'm struggling just to sit up right now!'"
Emily is sharing her story for Action for M.E's 2019 awareness campaign, 'Are you missing M.E?', which aims to raise much-needed understanding of this condition.
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Mary-Jane Willows, head of children and young people's services, at Action for M.E said: "It's so important to raise awareness and understanding of the impact of M.E., to tackle the ignorance, injustice and neglect experienced by thousands of young people, like Emily, whose lives have been stolen by this debilitating illness.
"These children and young people need the right support to access education and healthcare that meets their needs, and we are here to help.
"If anyone, of any age, reading this needs information and support about living with M.E., please get in touch."
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