ME sufferer was told by doctors condition was ‘in her head’ | 06 January 2020


Eastern Daily Press, 25 December 2019, Taz Ali and John Siddle.

A woman left bedbound with an incurable illness revealed her fight simply to be believed.

Emily Canwood.

Emily Canwood, 24, spends most of her day lying in darkness and silence having been struck down with myalgic encephalomyelitis (ME).

Now housebound and reliant on her husband Nathan, 26, to care for her, Mrs Canwood told how her life was turned upside down after falling ill following a car crash in 2013.

She was diagnosed with ME two years ago but said many people refuse to accept her illness is real.

Mrs Canwood, from Fulmodeston, near Fakenham, said: “90pc of the time I am in bed, in the dark and in silence.

“Occasionally I can get myself to the sofa – but only by sliding down the stairs on my bum.

“I have to use a self-propelled wheelchair to leave the house due to severe fatigue but I cannot use it myself otherwise I lose the use of my arms – they go numb and heavy and this can last for weeks.

Emily Canwood, 24, from Fulmodeston, near Fakenham, was diagnosed with ME in 2017 following a car crash four years earlier. Picture: Emily Canwood/ME Association.

“I had to give up driving and there is not a bus in my village so I am very isolated and it does get me down but I am so grateful for my community, family and friends that I do have.

“My life has completely changed – I was a workaholic and I struggle everyday mentally with how difficult it is to do the most basic of things.

“I would just like to be taken seriously and for people like myself to have a fighting chance at life.”

ME causes extreme exhaustion, pain, brain fog, and a variety of other symptoms that can be made worse through minimal movement.

Mrs Canwood, who worked in healthcare for Norfolk County Council before having to leave her employment, struggled with GPs to get a diagnosis and was told it was “in her head”.

She said she has donated blood to the ME Biobank in London which aims to improve the diagnosis and treatment of the condition.

“I would like to raise awareness and my hopes are that, eventually, I can represent people with ME, build a community for others to connect and I want to normalise disabilities,” Mrs Canwood said.

The ME Association is at the forefront of improving access to care, treatment and research and removing the disease’s stigma.

Dr Charles Shepherd, of the ME Association, said: “We urgently need more funding for research into treatments for ME so people like Emily can have hope of reclaiming their lives.”

The ME Association

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