A STUDLEY teenager is sharing her heartbreaking story of isolation and crushed dreams, but ultimately hope, as part of ME Awareness Month.

Despite Rosa Zagurskas saying she is always in pain and that her dreams and ambitions have been dashed she says that she is now happy, offering a glimmer of hope to those suffering Myalgic Encephalomyelitis (ME).

Rosa has ME, a chronic, fluctuating, neurological condition that affects around 20,000 young people in the UK, and is the most common cause of long-term school absence.

It can affect anyone, of any age, at any time – and in different ways.

Rosa said: “For the first three years of having ME, I was pretty much bedridden, was completely isolated and had no friends.

"I was quite active; I was a dancer and gymnast and I’ve always been very ambitious.

"But my ambitions to become a dancer have become pretty much impossible.

“I am almost permanently in a wheelchair. I can’t walk very well, can’t see very well, I am always in pain, often vomit and feel sick, and I am so, so tired."

People with ME experience severe, persistent fatigue – very different from ordinary tiredness.

This leads to a flare-up in symptoms including chronic pain, problems with the nervous and digestive system, and difficulties with concentration, thinking and memory – known as ‘brain fog’.

Rosa, who is studying part-time for a college course in music performance, said: “I love to work and play music, and I get excited when I have a new assignment or decide to learn a new song.

“But I get so frustrated when everyone is ahead of me and it takes me a week to learn a song, and 45 minutes to just write a paragraph.

“I have so many dreams, but I always fall short. I think that is the worst part about being sick.”

There is currently no specific test that can detect ME, and no pharmacological cure.

People with ME can vary enormously in their experience of the illness, and also how long their symptoms last.

Thankfully, Rosa is now well enough to attend college for a few hours each week, which she says has helped her feel less isolated.

"Just holding on to the happiness I get when I’m with my friends, or when I’m playing a song, really helps me cope. Although, I seem to be getting more ill by the year, things are looking up and I’m finally happy.”

Rosa is sharing her story as part of Action for ME’s 2018 ME Awareness Month campaign, This is ME.