Gemma Mullin for The Sun and John Siddle, PR Manager, ME Association.
SMILING for the camera on her 16th birthday, Laura Brockway looks a picture of good health.
But just days later, the happy-go-lucky teenager was struck down with a cruel energy-sapping disease that has left her bed-bound for more than six years.
She could not even brush her teeth or wash her body for three years and needed a hoist to sit upright.
Yet some medical professionals still refuse to accept her illness as real – and claim it is ‘all in her head’.
Laura, now 25, has chosen to lay bare the brutal reality of life with ME (myalgic encephalomyelitis) – which affects 250,000 people in the UK.
Some patients are so severely affected that spend their days in darkened rooms, unable even to watch TV or listen to music – even touch is intolerable and many are tube fed.
Yet sufferers often have to fight to be believed – with catastrophic misconceptions about ME leading to the disease being cruelly branded ‘yuppie flu’ or ‘millennial burnout’.
Bedbound
Laura, from Eastleigh, Hants, fell ill with a virus in July 2009 and never recovered.
She was hit with hallmark ME symptoms just days after her 16th birthday.
Then in January 2013, her illness worsened.
She told Sun Online: “I’ve spent the last six-and-a-half years bedbound in a dark bedroom. I can barely leave my bed and leaving the house is something I can only dream of.
“My world is the size of one room and if I'm lucky every once in a while I get a glimpse of life outside of my bedroom.
“I’m desperately ill and there’s no cure. Yet there are many people out there who think that it’s a psychological issue that can simply be fixed with exercise and counselling.
“Every aspect of my life has been turned upside down. Yet I’ve also had to cope with the fact that so many people don’t even believe I’m ill – even some doctors.”
The neurological condition causes extreme exhaustion, pain, brain fog, and a variety of other symptoms – with the cruel hallmark that they are made worse through even bare minimal exertion.
So even going for a shower, or going to the toilet, can strike down an ME sufferer for days or even weeks.
Laura is reliant on her mum Sharon for her care needs, as well as agency carers who call in on weekday mornings.
She said: “It’s a far cry from the colour-filled life I had imagined for myself.
“I was going to save the world and explore every inch of it while doing so.
“My mum says I was born asking why, I have always had such a strong curiosity of the world and I long to experience all it has to offer.
“Through a phone screen I have watched my friends graduate, travel the world, enjoy fulfilling careers, get married and even start families.
“All things I am unsure I will ever get to experience.
“Meanwhile, I have had to learn to sit up again, stand for a few seconds and am beginning to learn how to walk after six years of being unable to take a step without another person holding me up.
“I am a 25-year-old woman who is unable to care for herself or be left alone for more than a few hours at a time.
“If I am thirsty I have to wait until someone can get me some water. If I need the toilet, I can't go until someone can assist me.
| What is ME (myalgic encephalomyelitis) and what are the signs and symptoms? ME (myalgic encephalomyelitis) is also known as chronic fatigue syndrome (CFS. It is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness. ME can affect anyone, including children, but is more common in women, and tends to develop between your mid-20s and mid-40s. As well as extreme tiredness, people may have other symptoms, including: – sleep problems, – muscle or joint pain, – headaches, – a sore throat or sore glands that aren't swollen, – problems thinking, remembering or concentrating, – flu-like symptoms, – feeling dizzy or sick, – fast or irregular heartbeats (heart palpitations). Source: NHS |
“If I want a wash, someone else has to wash my body for me. For three years I was unable to brush my own teeth and I had to use a hoist to leave my bed.
“There have points when I have been unable to feed myself, lift my water cup or even speak.
“There are mornings when I wake up and have no idea how I'm going to make it through the day.
“A day which involves the most basic of tasks like simply eating.”
Laura told Sun Online she wishes her illness was taken more seriously and that more funding was invested in research to help find a cure.
Less than £1 is spent by the government on each ME patient each year.
She said: “The worst thing is that there are people who are suffering even more than I am.
“People who haven’t seen the outside world for years, decades even, are unable to communicate and have to be tube fed.
“One of my best friends has had severe ME for 23 years. She also happens to be the kindest and strongest person I know.
“But unless something drastically changes for people with ME, in the way of research and awareness, we will never have the chance to meet.”
The ME Association is at the forefront of improving access to care, treatment and research and removing the disease’s stigma.
| Dr Charles Shepherd, medical adviser to the ME Association, said: “There are thousands of people in the UK with Severe ME, which is a truly devastating disease. “The nature of the illness means patients are hidden away behind closed curtains and desperate not to be forgotten about. “We urgently need more funding for research into treatments for ME so people like Laura can have hope of reclaiming their lives.” For more information on ME, or to support research through donations, visit www.meassociation.org.uk |
Footnote:
The ME Association greatly appreciates every person with M.E. who comes forward to offer us their stories or to share their experiences. We are always on the look out for more especially from those able to send photos as well.
Talking about Real People with M.E. is arguably one of the best ways we have of raising awareness and it can help to bring us closer together as a community.
If you would like us to consider your story for future press releases, news-media articles, guest blogs on our website, social media posts, or ME Essential magazine; then please contact either: john.siddle@meassociation.org.uk or russell.fleming@meassociation.org.uk
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