A Sneinton woman said she feels like a 100-year-old trapped in a young person's body while describing the effects of her brain condition.
Hannah Grundy, 36, was diagnosed with ME, or myalgic encephalomyelitis, in her late 20s and became ill just months after starting a new job with data giant Experian in 2011. She is now essentially housebound.
The neurological condition, which causes extreme exhaustion and pain affects more than 250,000 people in the UK – and there is no cure.
Speaking about her condition, Hannah said:
“ME makes you realise what is important in life. It's a constant struggle and you never know when you'll get worse again.”
“Just as you come to terms with things you get a little glimmer of hope in the form of a slight improvement but then things go back to how they were before or worse, and you have to start all over again.”
|“At my worst it didn't feel like much of a life – just an existence waiting for a cure.”|
“I often feel like a 100-year-old trapped inside a young person's body. My 93-year-old grandad is more able than me much of the time – and that's after [he had] pneumonia, lymphoma and a broken femur in the last year alone.”
“You want to scroll through social media but it wears you out. If you want to read emails it wears you out. If you want to watch a TV episode it wears you out.”
“My boyfriend often says I act like I have a migraine without the headache as I'm exhausted, can't deal with much stimulus, struggle to comprehend things and just want to be left alone to lay quietly whilst being brought food and water.”
Hannah, who is originally from Lincoln, wants to end the stigma surrounding the condition. She added: “I lost all my hobbies when I got ill. I couldn't even listen to music or do puzzles.”
|“It's difficult when well meaning people ask what am I going to do when I'm better. I won’t get better unless more money is invested into better research and we find a cure.”|
“A lot of people simply haven't heard about it or mix it up with MS as they sound similar and have many similar symptoms.”
“I certainly don't think most people understand the seriousness or longevity of it and probably think of ME as something that happens to other people. I certainly didn't expect to go to bed one day in my late 20's and never recover.”
A parliamentary debate last year was told how people with ME are more than six times likely to commit suicide.
|“To look at these people – men, women, children – and their individual tragedies only further serves to ask the question: ‘Why is ME still not being investigated with the urgency it so obviously requires?”
“We want to tell the world about the people that suffer because of this real disease – day after day, week after week, year after year, and in some of the cruellest cases, decade after painful decade.”
Neil Riley, Chairman, ME Association.
Dr Charles Shepherd, from the ME Association, added:
“This is an invisible illness. When you see people with ME, we might not always look ill, but when our symptoms flare, the effects are obvious.”
“It can feel like a constant flu, the smallest exertion can floor us, our bodies are painfully sore, restful sleep eludes us, light and noise are intolerable, and ‘brain fog’ causes confusion.”
“ME remains a hidden disease. There is no known cure and no effective treatment – and it can lead to greater functional impairment than multiple sclerosis or cancer.”
“The most severe sufferers are often the most hidden. A lot of people give up and their families are left fighting, so they can’t raise awareness. There’s a higher risk of suicide with ME sufferers.”
|“People find it hard to understand, with the medical advancements, how something like this can happen in this day and age.”
“We desperately need more funding towards research and give people a fighting chance of reclaiming their health.”
Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
The ME Association
Real People. Real Disease. Real M.E.
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts – particularly during ME Awareness Week – and help ensure we can continue to inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite and visit our JustGiving page for one-off donations, to establish a regular payment or to create your own fundraising event.
ME Association Registered Charity Number 801279