Press Release by John Siddle, PR Manager, ME Association.
A MUM left housebound after being struck down by a devastating disease has spoken out about living in a decade-long quarantine.
Mum-of-two Emma Sweetman, 42, spoke out about life in enforced lockdown after being diagnosed with the devastating energy-sapping condition M.E. (myalgic encephalomyelitis).
She is among 265,000 Brits living with the incurable illness – also known as chronic fatigue syndrome.
It is a disease that can dramatically impact a person’s ability to function and is often triggered by an infection from which people never seem to recover.
It doesn’t discriminate, affects all ages and ethnicities and there is no effective treatment. One in four are so severely affected that they become housebound or bedbound.
Emma, from Eastbourne, Sussex, spoke out to at the launch of ME Awareness Week, 11-17 May – at a time when society at large has had to come to terms with what it feels like to be in temporary isolation.
She spent a decade in isolation at home after becoming severely ill with ME in 2004. For the past six years she can only leave her house in a wheelchair for short trips.
Emma relies on the care of husband Jonny, 39. She said, “I am mainly house- bound so for me this isolation is normal life. We are used to spending lots of time at home. I feel like I am trained in isolation.
“I have had years of not being able to do anything. Years of not being able to socialise or be with people properly. It’s a different way of life when you are plummeted into silence with a body that is unable to do anything.
“My faith has sustained me and kept me alive. I think I would have gone under a long time ago if I didn’t have my faith to depend on.
“Anything I do physically can put me back in bed with more pain and exhaustion. I can’t put into words what it is like being bed-bound not for days or a week, but years.”
ME causes extreme exhaustion, pain, brain fog, and a variety of other symptoms – with the cruel hallmark that people with the disease can be made worse after even the slightest exertion.
Sufferers are often confined to their beds, unable to walk, and need help even to shower. Emma – mum to Abigail, 11 and Isaac, eight – uses a wheelchair on the rare occasions she does leave home.
 |  |  |
Emma said: “Not being able to walk is one of the hardest things I have had to come to terms with. I may never walk or run again properly, and that is heart-breaking for a sporty person.
“After 10 years of being housebound, I can now go out for short periods, I switch between an electric scooter and a push wheelchair to get around, this enables me to get out for fresh air without walking and getting tired.”
There is no known cure for M.E. – and worse still, there remain vast misconceptions – even in medical circles – that ME is ‘made up’, ‘in the mind’ or even ‘laziness’. Yet for Emma the condition is brutally real.
Emma said: “For 16 years it hurts to breathe. My chest and lungs feel like they are being squeezed as though someone were sitting on me. It often feels like my brain shuts down and I must tell myself to breathe. It’s been a constant battle; I have had many days where I lay not knowing if I will be alive at the end of the day or not.
“It is hard asking someone to take you to the toilet or to bathe you. You lose your dignity and your independence, and you lose your place in life. Often being ill is a place of feeling constantly vulnerable where you are unable to do things for your- self.
“Family days out cannot happen because it is just too much
for me. I miss out
on so much, not being able to take them out. Watching them go out for the day
without me is heart-breaking. I long to take them for a walk in the woods or on
the South Downs.”
The ME Association is at the forefront of improving access to care, treatment and research and removing the disease’s stigma.
Chairman Neil Riley said: “Sadly, and suddenly, populations around the world are learning what it is like to be socially restricted, housebound and isolated from friends and family.
“The feelings of exclusion that many have faced are what thousands of ME sufferers deal with on a daily basis. But for us, this is not temporary, there are no restrictions that can be lifted – with not even a glimpse of a cure on the horizon.
“We are pleased to share the stories of people like Emma in the hope that we can raise money to find treatments, and ultimately a cure, for M.E.”
The BBC with Emma Sweetman and Dr Charles Shepherd
12 May 2020 BBC South East Today News (starts at 13.20):
“I really hope that when lockdown finishes that people don’t forget those left in isolation. Because for people with M.E. and other disabilities are still going to be in isolation. This isn’t going to stop for us, this is going to carry on,” Emma Sweetman.
“Sadly, if this is not managed correctly, particularly in relation to how people do their activity management – that’s balancing activity, exercise, and rest – there is a danger that some of these people are going to go on to develop M.E.” Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
10 May 2020 BBC Sounds Radio Sussex (starts at 2hrs 47mins):
“My entire energy was used up by brushing my teeth – and that was my day. I would look at a chair and I would have no idea what a chair was. I couldn’t spell the word, cat. My body just shut down completely. I lost the ability to read, I had to learn to read and learn my sounds again.
“But I think the hardest thing for me in isolation has been that I had 10 years when I couldn’t have a television, radio, or any noise. It was literally a decade of silence and that has been a real challenge,” Emma Sweetman.
The ME Association
Please support our vital work
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 and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.
Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!
ME Association Registered Charity Number 801279