In an attempt to understand and raise awareness about the situation of ME/CFS patients in our continent, our Afrika News team contacted the director of ME/CFS foundation South Africa, Mrs Retha Viviers. In this part of the interview, Mrs Viviers will thoroughly explain what ME/Chronic Fatigue syndrome is and she will also talk to us about her foundation.
Retha, please tell us more about yourself and your ME/CFS foundation S.A?
Personally, ME/CFS came at a big cost to my family and me, but I have also gained in unexpected ways.
From a cost point of view, I’ve lost the ability to earn an income, which ruined us financially as I was going to be the main breadwinner and my husband the house husband building websites as a hobby. My husband is an engineer, but by the time my health deteriorated to the point of not being able to work, it was too late for him to get back into the industry as he was almost 60. Month to month financial commitments are a complete nightmare. We still have one child at school and she is very talented, but having a sick mom and the financial and other consequences are very hard on her as well. It breaks my heart as a parent.
I’ve lost my identity to a large extent, and my memory and other cognitive abilities have deteriorated significantly. Physically I have become weak. I still get PEM (Post-exertional malaise) /PENE (Post Exertional Neuroimmune Exhaustion) if I do too much.
From a gaining point of view, despite all the heartache and hardship, ME/CFS has enriched my life. I started a support group on Facebook in November of 2012 and over the years saw the dire need of patients for hope, companionship, financial assistance, medical treatment, special care facilities, and basic living necessities. I have come across the most amazing people, very ill and in severe pain, but still very kind and as positive as can be.
To read the rest of this interview, click on the link below: