Katy Beardsworth has ME and has to lie down in a dark room when her kids start being loud
A MUM-of-two is suffering from a chronic fatigue condition which she says is triggered by NOISE from her young children.
Katy Beardsworth, 38, has ME – a cruel illness which presents as unrelenting exhaustion and profound pain.
The deeply misunderstood neurological condition affects more than 250,000 people in the UK and for which there is no cure.
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.
Mum-of-two Katy, from Milton Keynes, Bucks, became ill after the birth of her second child, Eliza, two.
Her neurological illness is made worse by exertion – including sensitivity to sound and light.
It means that her toddlers’ touch and voice can be too painful to tolerate.
“Before I got sick I was extremely active. I used to run, swim, lift weights, go to yoga and pilates
“Weekends were spent going on walks and cycles with the kids and I was very ambitious at work.”
“Fast forward two years and things couldn’t be much more different.”
“Being a parent is the area of my life which causes me the most guilt and is the hardest to feel like I am managing adequately.”
“I have two young children, who are both wonderful and exhausting.”
|“Trying to manage these early years and the exhaustion that goes with them, with a chronic illness that can leave me unable to move, is almost impossible.”|
“Most parents of young children are exhausted – they are demanding, often don’t sleep well and there are no holidays from being a parent.”
“Trying to manage these early years and the exhaustion that goes with them, with a chronic illness that can leave me unable to move, is almost impossible.”
“I certainly wouldn’t have managed it without my amazing husband who has taken on 100 per cent of the ferrying around, bedtime routines, night wakings, cooking, shopping.”
“I frequently have to leave the room as I can have sensory issues with noise and light so need to go and lie down and rest for a while when things get too noisy. And my children are very noisy.”
“They have both realised this now, and will often shush each other and beg me not to go for my rest, which is heartbreaking.”
“Lately I have been able to do a little more with them, which has been wonderful and we have found certain activities as a family that I can get involved in without triggering a ‘crash’ so we are finding a way to live within my limitations, without total compromise.”
“We even managed a trip to Disney World last year as I committed to using a mobility scooter to get around the parks and although I suffered a big crash when I returned, it was worth it.”
|“I frequently have to leave the room as I can have sensory issues with noise and light so need to go and lie down and rest for a while when things get too noisy.”|
Real People. Real Disease. Real M.E.
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.
Katy, unlike most, has been able to hold down a job in environmental management thanks to her understanding employers.
|“Physically I am extremely limited by my illness. The fatigue and pain I experience, along with post-exertional malaise, pretty much rules out all exercise beyond super gentle yoga and very slow walking.”|
“Up until recently I couldn't walk for more than a few 100m without needing a break. Given that I used to run half marathons, it is change that’s is extremely hard to deal with.”
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: “For me, ME is a whole body, fully encompassing illness that affects all aspects of my life.”
“The fatigue is the most debilitating aspect – it's more than tired, it's the most draining exhaustion you can imagine.”
“It’s like having flu, tying lead weights to your limbs and attempting to do an Ironman.”
“It's like drowning in some kind of viscous fluid that won't let you break free and no matter how much you sleep it doesn't let up.”
“Trying to live my life, trying to work, parent, be a wife and friend, do some of the things that makes me happy, whilst dealing with the symptoms of ME feels like a constant battle.”
|“I am well aware that there are many people out there who suffer much worse than I do. People confined to their house, their bed. People who have lost their jobs and can’t deal with any level of stimulation. So I am grateful for the amount that I can do, and the relative mildness of my illness.”|
“But that doesn’t stop me from grieving my previous life, wondering if I will ever get back there, if I will ever be able to cope with ‘normal’ levels of work, life, exercise again.”
“For now, I am happy that things are slowly, slowly improving and I am hopeful that I can continue making incremental improvements in my symptoms and slowly increase what I am able to do.”
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. ME Awareness Week runs from May 6-12, 2019.
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