Nicola Ingram, 41, was diagnosed with ME, a cruel illness which presents as unrelenting exhaustion and profound pain, and a variety of other symptoms, such as a malaise made worse by exertion.
One in four are so severely affected that they are rendered housebound or bedbound – with some even reliant on tube feeding.
Sufferers are often confined to their beds, unable to walk, and need help even to shower – an action that could then lay them low for hours, or even days.
Hidden for too long behind closed curtains, sufferers of the cruel and unrelenting disease ME are today bravely speaking out in the hope of better understanding and less ignorance.
For 2019 ME Awareness Week, campaigning charity the ME Association is presenting the real faces of hundreds of ME sufferers – all wanting to demonstrate how the illness has had a devastating impact on real lives.
Single mum Nicola, a former TV sports producer for the BBC and Sky, is now essentially housebound.
|“When you see people out who have ME out or even out out it means they’re having a really good day.”
“Most days you don’t see them as they’re in bed or on the sofa in pyjamas with hot water bottles and blankets sporting tremendous bed hair because they haven’t got the energy to comb it.”
“That’s ME, that’s me and my army most days. Invisible to most. The millions missing from society.”
It is a devastating contrast to her old life – where she had an active social life going out clubbing and shopping with pals.
She said: “ME is the frustrating gift of a disease that keeps on giving. Prior to my diagnosis I played football at university and enjoyed keeping fit.”
“Vacuuming, walking up and down stairs, doing the food shopping were all everyday tasks I took for granted.”
“Now, every day I weigh-up what I can do based on how much energy I have. Mum duties always taking priority over everything else. It’s taken time to adapt and I still push it without realising it some days.”
“I now go out very rarely. My social circle is smaller than it once was though my inner circle truly get it.”
|“Without a doubt the illness has cost me relationships as you can’t attend celebrations or get-together’s because simple everyday tasks exhaust me.”
“Most of my days are spent in my PJs and primarily in bed with an electric blanket on as it helps ease the muscle pain and I have poor temperature control.”
“I write a blog about life with this disability, I read when I can and I’m a box-set ninja. I’m one of the lucky ones in the sense that I have a fantastic support network of family and friends who help with everything from grocery shopping, bringing in emergency supplies, helping out with lifts and childcare.”
Less than £1 is spent each year on people suffering from ME and there is a chronic lack of funding for medical research.
Many doctors still don’t know how to diagnose or manage the condition.
A parliamentary debate last year was told how people with ME are more than six times likely to commit suicide.
She added: “Although there is definitely more media coverage and understanding in recent years, there are still 250,000 people in the UK alone suffering with this disease.”
|“Living with ME is like waking up with the worst flu and hangover combined you’ve ever had in your life, every single day. Imagine waking up every day and feeling so ill you struggle to go to the loo or lift your head off the pillow.”
Real People. Real Disease. Real M.E.
The ME Association is at the forefront of improving access to care, treatment and research and removing the disease’s stigma.
The Real ME campaign has received more than 400 photos, video clips and contextual stories from people desperate for treatment that works.
ME Association chairman Neil Riley said: “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 REAL 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.”
Dr Charles Shepherd, from the ME Association, said: “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, ME Association.
For more information on ME, or to support research through donations, visit the ME Association website.
The ME Association
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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.
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