[VIDEO] ‘I’m mostly tired, every day’
Local ME CFS Foundation founder spends more than half of her day sleeping.
Imagine a life where you get completely exhausted when you are too excited, active or experiencing strong emotions.
A life where you have to sleep for about two hours every two to three hours to prevent you from getting sicker.
This has become Retha Viviers’ daily routine. Her whole life changed because of an illness, Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS) and lately Systemic Exertion Intolerance Disease.
Retha explained that ME CFS is a complex illness that is a result of your body not making enough energy on a cellular level. She said people with the illness, although it also affects your brain, immunity, sleep ability and can cause severe pain, never look as sick as they are therefore it is known as an invisible illness.
In honour of those fighting this illness, Retha founded the ME CFS Foundation, the first of its kind in South Africa.
“Even though there is not a cure for the widely misunderstood illness, I believe the foundation will serve as a support group for those who suffer from ME CFS. People have committed suicide because they could not see a future for themselves with this illness,” Retha told the News at her home in Noordheuwel.
Retha had to quit her successful career after her illness progressed in 2009.
Dr Charles Shephard, medical adviser to the ME Association, on ME CFS:
“The illness has ruined us financially. After all our funds were used to live and also try various treatments from people who claimed they had the cure, we had to sell our house in order to live from the proceeds.”
After giving up on many of her dreams, it has now become Retha’s life goal to help others with ME CFS. She already started a support group on Facebook many years ago and was surprised by the amount of members it gained.
“I think so many people think they simply need to exerciser or eat correctly. But this illness does not yet have a cure and you will always remain exhausted unless you regain some energy during
the day by sleeping and pacing,” she said.
According to Dr Charles Shephard, medical adviser to the ME Association, ME CFS is still ignored or dismissed by doctors.
“People with ME went undiagnosed or misdiagnosed for long periods of time, often combined with harmful management advice, as is still the case,” he told The Telegraph last year.
If you would like to contribute to the foundation, contact Retha by sending an email to mecfssafoundation@gmail.com or visit their website.
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