From ‘The Sun’, 29 March 2012Sophie was a lively little girl… now she’s so weak she can’t even text
Robbed of life: Heartbreaking victims of ME and fibromyalgia
LITTLE is known about ME – and even doctors have been accused of failing to take it seriously.
But the reality is Myalgic Encephalopathy – sometimes called Chronic Fatigue Syndrome – is a severely debilitating illness affecting around 250,000 people in the UK.
Symptoms include extreme exhaustion, muscle pain, headaches and poor concentration. Many sufferers can be bedridden for years. Fibromyalgia is a chronic condition where you suffer widespread pain and fatigue.
As many as one in 25 people may suffer from it in Britain.
Here, LYNSEY HAYWOOD speaks to three people who tell us why these two illnesses are far more serious than most people realise.
SOPHIE ELLIS has suffered from ME since she was nine. She can’t even watch TV or send a text and is fed through a tube.
She has not been downstairs in her house in Banbury, Oxon, for more than a year.
She lives with dad Mark Ellis, 52, a financial adviser, and mum Karen, 52, her full-time carer. Mark says:
When Sophie was nine she got a fairly typical virus which lasted two to three weeks.
But she never really recovered.
She suffered crippling gastric problems, heartburn and acid reflux, as well as a general lack of energy.
The GPs we saw tried to deal with the symptoms rather than the root cause.
As parents we had no knowledge of ME, so while seeing countless consultants we never thought to ask about it.
We simply thought it was something people got in the Eighties and it made you feel like you had flu.
We certainly didn’t know you could treat it.
Sophie was getting worse and worse to the point where she couldn’t eat and was increasingly bedbound.
Then, about two years ago, one consultant suggested ME and, after researching it ourselves, it all made sense.
It took up to six years to get an accurate diagnosis but sadly, by then, having pushed herself so hard for six years, Sophie’s batteries were completely run down.
It felt like we’d missed our window of opportunity when we could have done something.
Now, Karen has given up her job as a shelf-stacker at Sainsbury’s to be her full-time carer.
The slightest thing exhausts Sophie and because it’s neurological, it affects every part of her body.
She can’t watch TV or use a laptop because she’s light intolerant. It makes her dizzy or ill.
She can’t read more than a couple of times a day and she hasn’t been downstairs for more than a year.
We can’t speak to her for more than a few minutes at a time because it drains her energy.
Her room has to be dark and she needs help getting to the loo as she’s too wobbly on her feet.
She can read texts but can’t type herself because her brain can’t co-ordinate her fingers.
Eating and chewing is now almost impossible for her, so she has a tube which feeds liquidised food through her nose, but she can drink herself.
We’re trying to step up the little achievements she can manage each day – exposing her to a little more light, getting her to eat a little food herself.
But if we push her too hard she relapses badly and we’re back at square one.
We can’t have visitors to the house at all now because of any potential disruption. The best Karen and I can hope for in terms of our own lives is a walk and a coffee when Sophie’s brother Matt, who is 29, comes round.
This makes Sophie feel terribly guilty too – ME impacts hugely on everyone.
But throughout Sophie’s been bright and cheerful, always with a smile on her face.
Meeting other people through the Association of Young People with ME (AYME) has helped us realise we’re not alone and often people do get better We’ve met people in their twenties who are leading largely normal, happy lives, who were once like Sophie is now.
They are our inspiration to keep going.
JAMIE STRONG, from Kingston upon Thames, is determined to end the stigma surrounding ME. He says:
Five years ago I regularly lapped the eight miles or so around Richmond Park on my bike. As a healthy, active 17-year-old, I enjoyed hanging out with my mates, running and pumping iron at the gym.
Then in January 2007 my whole world came crashing down.
Out of the blue I started having severe stomach pain with bleeding.
I was diagnosed with probable gastroenteritis and, after a colonoscopy, ulcerative colitis.
I started to get joint pain and brain fog.
I struggled through my A-levels but by September I was having trouble standing.
I was collapsing all over the place and had to postpone my place at university.
Next I was diagnosed with Addison’s disease, which is a lack of pituitary hormones in the body.
I was given more medication, which helped me go off to the University of East Anglia, but my short-term memory was letting me down and I felt exhausted.
Six weeks after I started, my parents had to come and take me home. It was then that I received the diagnosis of ME.
ME is sometimes called chronic fatigue syndrome. But fatigue doesn’t come close to what I have.
Most mornings I wake up – if I manage to sleep at all – feeling more drained than when I went to bed.
I often experience near-paralysis in my legs. If I manage to get myself in the bath, I then have to lie on the bath mat for 20 minutes before I can stand up.
Going up the stairs feels like I’m climbing Everest.
Even reading or a conversation can be too much for me now.
When I try to keep going, the exhaustion can become so extreme that I feel as if I’m about to die. It’s like my brain is on fire.
I have burning muscle pain and painkillers bring little relief. When this happens, the only way to survive is to lie in a dark, silent room.
I desperately miss friends my own age. They no longer see me since they don’t understand why I can do so little or why the doctors can’t help me.
I’ve made contact with other young people with ME but mostly they are too ill to meet. I can leave the house once or twice a week if someone is taking me and I don’t have to walk far. Sometimes I use a wheelchair.
I’ve tried everything to get my health back – alternative therapies, acupuncture, diet, supplements, cognitive behavioural therapy, increasing activity levels, relaxation techniques, meditation, resting, pacing and medication.
To live this life with no end in sight feels like a living death.
If only people would realise this is a real, devastating physical illness, then those with ME wouldn’t feel so abandoned, dismissed and belittled.
We need the Government to treat this as the serious illness it is, to educate doctors and to instigate more research so that proper treatments – possibly a cure – can be found.
OCCUPATIONAL therapist Linda Horncastle was crippled by pain caused by fibromyalgia for nearly two decades.
She even contemplated suicide to spare her family the burden of looking after her.
Linda, from Seer Green, Bucks, says:
I first fell ill aged 27, after the birth of my son Matthew. I saw a specialist who said it was a trapped nerve and gave me pain-killers, but it didn’t get any better.
The pain spread across to my other shoulder, down my back and I felt so utterly tired all the time.
Four years after Matthew was born I had my second son, Steven, by which time I couldn’t lift either of them up.
If they wanted a hug, they’d have to climb on to my knees.
I was completely dependent on my husband David, now 52, and friends to help me with the kids. I finally found out what was wrong with me when I was 33.
We were living in France and a GP referred me to a rheumatologist who said I had fibromyalgia.
He advised I visit some thermal baths and make changes to my diet. But then David’s job was transferred back to the UK and the stress of moving made my symptoms worse.
I was housebound for days on end. I didn’t have the energy to do the school run and I was in constant, agonising pain.
My family was suffering so much because of me.
David had to do all the cooking and housework. Normal things such as family holidays and after-school clubs weren’t an option for Matthew and Steven.
I felt so guilty I twice contemplated suicide, thinking they’d all be better off without me.
I’d lost almost all my friends because I couldn’t leave the house. I had panic attacks whenever I went on public transport.
The turning point was reading an article by a physiotherapist who’d been similarly debilitated by fibromyalgia.
She explained how she had got her life back and even started work again with stretching exercises combined with cutting out sugar, caffeine and gluten from her diet.
I made all these changes and went to a pain clinic where I learnt relaxation techniques so I didn’t burn myself out.
My symptoms improved by around 40 per cent, but I was still far from well again. A doctor suggested I try a device called an Alpha-Stim.
This uses a small electrical current to produce alpha waves which stop my brain getting more pain signals than it should.
By the end of the second week of using it I was feeling much better. I slept well for the first time in decades and my energy and pain levels improved.
I even started work again in 2010, which I never in a million years thought would happen.
For more information see ukfibromyalgia.com and meassociation.org.uk.