By Sally Churchward, Southern Daily Echo, 09 May, 2018.
WHEN Chrissy Russell was diagnosed with ME, she and her youngest daughter, Libby, shared a high-five.
It might seem like a strange reaction to a diagnosis of Myalgic Encephalomyelitis, an incurable and difficult to treat neurological condition, that causes persistent fatigue, pain, memory problems and sleep disturbance, but for Chrissy, it was proof that her symptoms weren't, as one doctor had suggested, all in her head.
“It's a bad diagnosis to get, in terms of getting help, but I knew I had it and it was a vindication,” says the mother of three from Fair Oak.
“I'd spent a lot of my life feeling lazy as I wasn't able to do things. The diagnosis gave my condition a name, a start at tackling some of the issues, and being taken half seriously.”
Chrissy says ‘half seriously' because, she says, there are still a lot of myths and misunderstandings circulating about ME, among both the public and medical professionals, with many viewing it as a psychological condition rather than a serious and debilitating disease.
Chrissy, who has recently celebrated her 60th birthday, was diagnosed in 2009.
Teenage Onset
She had suffered symptoms since her teens, including feeling generally lacklustre and frequently tired, as well as being clumsy and often bumping into things. She suspects her symptoms began following a bout of glandular fever.
But in 2007, a major life crisis resulted in a dramatic worsening of her symptoms.
“I couldn't get out of bed. I was sleeping all the time and had pain like you wouldn't believe.”
Before becoming ill, Chrissy had been a PA, but was forced to medically retire.
“Now, I can't even type a line without making mistakes,” she says.
“I tried to go back to work at one point, but I just couldn't cope.”
It took two years, a change of GP surgery and a lot of tenacity for Chrissy to be diagnosed with ME.
Chrissy's symptoms have not improved. She suffers from severe pain, including muscular pain all over, shooting nerve pain and dysaesthesia, a creeping nerve discomfort that spreads across her body.
She spends around 80 percent of her time in bed and has to use a wheelchair if she needs to be mobile, but her diagnosis has led to her receiving support from social workers and occupational therapists.
She now has a hospital bed in her living room, a stair lift and a carer comes to her every day.
“I count my blessings, I figure it could be worse,” she says.
“I do try to have a life. My mind is always busy, but by body doesn't always catch up.
“If I do something, I have to build up to it, and then I get payback a few days later, with pain and exhaustion.
“I have seven cats and do the odd cat show and see my children, but I spend a lot of my time on my laptop, between sleeps.”
Go Blue for M.E.
Chrissy also raises money to help look after street and temple cats in Thailand and raises funds and awareness for the ME Association.
On ME Awareness Day, on Saturday, she is holding a Go Blue for ME event at Emmanuel Baptist Church Hall in Eastleigh, which will include coffee, blue cake, with home made cat toys for sale and also a clothes swap, from 11.30am to 3.30pm.
Chrissy has also dyed her hair blue for the ME Association's Go Blue for ME campaign for this year's ME Awareness Week, which runs until Sunday.
“Raising people's awareness about ME is so important because people still think of it as ‘yuppie flu', even within the establishment, and it's often seen as a psychological condition, which it isn't.
“The main treatments are graded exercise therapy, which has been largely discredited and which can worsen symptoms, and cognitive behavioural therapy, which is basically suggesting you can think your way out of a physical condition.
“People often dismiss the condition, but the ME Association recently published a report on a study which shows that people with M.E. can be more disabled than those who suffer from multiple sclerosis.
“I get so many ignorant, off the cuff comments, and the ME Association is there to put them right, and also to fundraise for research because this is still a very mysterious disease with no cure.
“The hardest thing to accept about having ME is the incredible lack of public knowledge of the disease,” Chrissy adds.
Heartily sick
People think “its all in the mind” and still think this is a psychological illness.
“It makes me, and all other sufferers I am sure, angry and frustrated that these myths still abound. ME is officially classed as a neurological disease by the World Health Organisation. But it is in fact more that than, it is a multi-system disease, affecting not only the neurological system but also the immune, musculoskeletal, endocrine (hormonal) and cardiovascular system.
“I am heartily sick of people telling me I should exercise (that makes us worse), get a little part-time job (yeah right), or simply “I wish I could sit around all day doing nothing”, yes that was actually said to me.
The worst one is “I get tired too, its our age”. If you don't have ME, you honestly don't know the meaning of the word.
This is not our choice, I am not neurotic, I am not lazy, I have a serious disease.”
* Chrissy is fundraising for the ME Association: https://www.justgiving.com/fundraising/chrissysgoblueforme
What is ME?
More than 250,000 people in the UK have M.E. (myalgic encephalomyelitis), which manifests as unrelenting fatigue and profound pain.
The condition, also known as Chronic Fatigue Syndrome, has no known cure and is made worse by exertion.
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, days, weeks or longer.
But, despite the illness being recognised as a neurological condition by the World Health Organisation, patients are often branded hysterical, hypochondriac or even lazy.
The ME Association
We help people with M.E. and their families.
If you would like show your support for our vital work then please donate whatever you can afford to our ME Awareness Week Just Giving campaign – Go BLUE for ME.
Help us continue to make the UK a better place for people with M.E.
Thank you.