ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Hampshire woman tells of her ME nightmare
Friday 12 November 2010
Hampshire woman tells of her ME nightmare
IT started with extreme fatigue.
Within months, Kerry Still was barely able to get out of bed, her career was in tatters, and she was suffering from a raft of mystery symptoms that left her physically and mentally shattered.
At first Kerry, from Chandler’s Ford, thought she was coming down with a cold, but after months of sheer exhaustion she knew something was seriously wrong.
“I kept getting cold and flu-like symptoms,” said Kerry, 27.
“But it would knock me down for two weeks at a time. I was falling asleep on the bus and would sleep for up to 16 hours a day.”
Kerry went to see her GP who put her symptoms down to a virus.
With no sign of her condition improving, Kerry was forced to take more and more time off work.
Initially understanding, her employer let her reduce her hours, but when she was absent for 50 per cent of the time, they were forced to let her go.
“It was tiredness like nothing I’ve ever experienced,” says Kerry, who now receives employment and support allowance as well as disability allowance.
“I tried to carry on as best I could but I felt so poorly all the time. It got so bad I felt life wasn’t worth living.”
Desperate for a diagnosis, Kerry’s family urged her to see a different GP, who carried out a series of tests to try and identify the problem.
She tested positive for non-specific inflammation of the blood, a sign that the body’s immune system is fighting an illness — it just wasn’t clear which one.
In 2002, three years after first seeing a doctor, Kerry was diagnosed with ME, possibly triggered by an earlier bout of glandular fever.
The condition, also known as Chronic Fatigue Syndrome (CFS), affects an estimated 250,000 people in Britain, causing severe tiredness and a range of other symptoms.
It is difficult to diagnose because it varies so much from person to person and shares symptoms with a number of other medical conditions.
“I was told there is no cure, I just have to manage my symptoms as best I can,” said Kerry, whose doctor recognised the symptoms having suffered with the debilitating condition herself for six months.
“I was told I had a good chance of recovery within five years because I’m young, but here I am eight years later.”
Kerry says her ME has triggered many other conditions including thyroid problems, anxiety and depression, excessive sweating and fibromyalgia or pain syndrome, which causes excruciating pain all over her body.
She also experiences insomnia and a frustrating condition called sleep reversal, where her body wants to sleep in the day and wake at night.
“ME causes mental as well as physical exhaustion, which can lead to cognitive problems,” she says.
“I struggle to concentrate and sometimes I get my words and numbers muddled up or get stuck for words. I have experienced visual disturbances too, and my eyes are prone to stinging.
“Sometimes I get so tired I’m close to tears and I have so little energy my mum has to care for me, even washing my hair at times. If I do anything it can take 48 hours to recover.”
Kerry’s illness has taken its toll on her social life.
“I feel like I’m losing my friends.
I’ve got a small group of close friends who understand, but it’s taken time.
“ME has taken away my career, my social life and my independence. I always thought I would start a family at 27, but there’s no way I could look after a child at the moment. It feels as though my life is on hold.
“I’ve missed out on most of my adult life because of this.”
Treatment for ME is limited. Kerry sees a hypnotherapist to help with her anxiety and to deal with the emotional impact of her illness. She also takes a variety of nutritional supplements and is a member of the Eastleigh and Winchester ME Support Group.
“I think it’s very important to try and find people who are going through the same thing as you. Just being able to chat and to share experiences and coping strategies is so valuable.
“I wish there was something more that could be done to help people with ME. It can make you feel down, frustrated and guilty about being a burden. You just have to try and keep your spirits up.”
Kerry even feared her illness would prevent her from marrying husband Ian earlier this year.
“Doctors thought the day would be too much for me,” says Kerry, who met Ian online, “but I got through on adrenaline”.
She added: “The Government won’t fund research into ME because they don’t recognise it as a physical illness.
They see it more as a psychological condition — a problem in your head.
“But we need biomedical research to find out what’s happening in the bodies of people with ME so we can find a way to treat and hopefully even cure it in the future.
“I’ve paid to have tests done privately, which have shown there are abnormalities in my blood.
“I have the same amount of dead cells in my blood steam as someone undergoing cancer treatment, so clearly there is something physical going on.
“It’s so frustrating for me and the thousands of other people whose lives are being destroyed by this illness.
“I don’t know what the future holds. I could make a full recovery or I could have ME for the rest of my life.”
She said attitudes to the condition had improved (not so long ago people were calling it yuppie flu), but people can be dismissive about ME.
She added: “It’s hard for people to understand the severity of it because it’s an invisible illness — I could look well, but inside I feel terrible.
“ME is a debilitating and frustrating illness that can make you feel alone and misunderstood. But I’ll never give up hope that one day scientists will find a cure.”
For more information and advice on ME, visit meassociation.org.uk or contact the Eastleigh and Winchester ME Support Group on 023 8025 1719, and at eastwinme.ik.com.
The above originally appeared here.
blog comments powered by Disqus