"IT’S not as if you are disabled or anything."

These were the words faced by Nicky Morley during an appointment with her GP before she was diagnosed with M.E – a debilitating condition which causes chronic fatigue.

The 48-year-old, from Othery, near Bridgwater, has spoken of how the illness has changed her life since a road accident in 2012.

Nicky has opened up about her experience as part of a campaign led by Action for M.E to tackle the ignorance associated with this “horrible illness.”

She said: "I had a road accident in January 2012. I had full-body nerve, joint and muscle pain and could not stop sleeping. I went back to A&E a few days later and they said it was just shock.

"I spent the next 12 months seeing various GPs, neurologists and rheumatologists, and was eventually diagnosed with both M.E. and fibromyalgia. I have been bedbound and housebound for six years now. I used to scuba dive, travel, horse ride, hike and go camping – it’s all gone."

Somerset County Gazette:

Nicky is among around 250,000 men, women and children in the UK to have this chronic, fluctuating neurological condition, and it can affect anyone, at any time – and in different ways.

Even in its so-called mildest form, M.E (myalgic encephalopathy) changes the lives of everyone it affects, and not just their health. A lack of understanding and awareness about the illness means children and adults affected by M.E can experience disbelief and discrimination from friends, family, teachers, employers, colleagues and even health and social care professionals.

“I’m trying hard not to become isolated, but I have lost most of my friends”, said Nicky. “They lost patience with me cancelling things and not answering the phone on bad days.

"They couldn’t understand how one day I could be sitting up happy, then the next week sleeping and really poorly. Half the battle M.E patients have to fight is convincing people around them that they are severely ill and disabled. My old GP said I needed to get a grip, pull myself together and get back to work – ‘it’s not as if you are disabled or anything’ were her words.”

There is currently no specific test that can detect M.E. and, like Nicky, many people wait a long time to be diagnosed, leaving them without care and support. Symptoms include 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 and difficulties with concentration, thinking and memory – known as “brain fog” – and problems with the nervous and digestive system. One in four people with M.E. are so severely affected that, like Nicky, they remain bed or housebound.

Somerset County Gazette:

“For the first four years of my illness I was incontinent, permanently bedbound, suicidal, alone and in excruciating pain. I was always light and sound-sensitive, with the most horrific anxiety attacks. I was too exhausted to raise my head off the pillow and wanted to die every day. The depression was unmanageable."

In the absence of a pharmacological cure for M.E., Nicky, like many people with this condition, uses a combination of conventional medical approaches, complementary therapies and dietary changes to manage her symptoms. Her health has now improved enough that she can, on rare days, get out of the house.

She also uses a technique known as pacing to help her manage her symptoms. Pacing is all about balancing the amount of activity you do with periods of rest, so that your body isn’t pushed beyond its limits, and many people with M.E. say they find this approach helpful. “I plan small things that I can achieve each day, and plan days ahead if I know I have to do something. Plus I have learned to say no to people if I’m too tired.”

Nicky is sharing her story as part of Action for M.E.’s 2018 M.E. Awareness Month campaign, This is M.E.

Sonya Chowdhury, chief executive for Action for M.E said: “It’s important to raise awareness and understanding of the unique impact of M.E., to tackle the ignorance, injustice and neglect experienced by thousands of young people, families and adults, like Nicky, whose lives have been stolen by this horrible illness. We want to show that M.E. is different for everyone – and that everyone with M.E. matters, whatever their experience.”