I’d like to share the love about Team Foggy’s friend Retha Viviers. Over the past year or so, Retha has become a close confidant and someone to bounce ideas off. She is also the reason I became aware of the dictaphone option on WhatsApp. We use that function to communicate as typing is usually far too tiring!
I want to help to raise awareness of her story, why she set up the ME CFS Foundation in South Africa, and how we can help her in her efforts. This is the first of a number of blog posts about M.E in South Africa, as told by Retha Viviers.
This is Retha’s M.E story.
My name is Retha Viviers. I was born in Johannesburg in South Africa. I am happily married and have 2 lovely daughters; aged 26 and 18 years old.
I studied quite a bit at University and enjoyed working. I started in Marketing Research, moved onto Business Analysis and later became co-director of our own business providing different services in the petroleum and later on the security industries.
I always had a lot of energy: I used to love: dancing, camping, hiking, socialising, doing things on the spur of the moment, playing and swimming with my children, reading, etc. I was outgoing and loved talking to people. We lived at the coast when I underwent a fairly big stomach operation in 2002.
My life was about to change …
The expected recovery time for my operation was 6 weeks; however, months after the operation I still couldn’t build any stamina, I knew something was wrong. I started getting viruses all the time and struggled waking up in the morning.
My health deteriorated and during 2004 I was eventually diagnosed with Myalgic Encephalomyelitis (also referred to as Chronic Fatigue Syndrome) – hereafter ME/CFS. I was fairly fortunate in that I could still continue working up to 2008.
However, at that time I could no longer drag myself through the day. Long before then, the activities I so much loved became a MEMORY, no more dancing, hiking, playing and swimming with my children, etc.
I had to face the fact that life as I knew it was completely over. I finally had to accept that my body was broken.
Having ME/CFS is a difficult life, but when my oldest daughter contracted a virus which attacked her heart and ME/CFS symptoms started our family was literally devastated. She had to leave school and continue with her last year of school via homeschool. Her dream of becoming a doctor was shattered; this was 9 years ago. She started reading medical books by the age of 12 and that was the only field which interested her, it was her passion.
Watching her missing out on life a young person should be living breaks my heart!
Personally, ME/CFS came at a big cost to my family and I 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 supposed to become the main breadwinner, my husband is 15 years older than me and he was going to be the househusband, take care of the children by scaling down his involvement in our business. Due to my illness and two projects which went south we lost our house and all our life savings. My husband worked as an engineer but was close to 60 then and couldn’t find a position as South Africa gives preference to previously disadvantaged applicants due to the terrible “Apartheid” system. My oldest daughter’s ME also added to our already dire financial situation. Touch wood my youngest daughter is healthy and is completing high school in November this year.
I’ve lost my identity to a large extent, and my memory and other cognitive abilities have deteriorated significantly. Physically I have become weak. Getting ME/CFS is like a jail sentence. The time you spend in your cell and how big your cell is depends on how severely ill you are. A cell can be your bed, a room, or your house. Leaving your cell comes at a high price and you risk the chance of a relapse. It is called post-exertional malaise (PEM).
ME/CFS is also an isolating illness. Telephone calls can be exhausting, so socialising is very difficult if not impossible. Going over your energy limit (some call it the number of spoons you have available to use per day) leaves you feeling very ill for a few days, if not longer, after an event. There is no room for doing things on the spur of the moment, etc. People need to understand ME/CFS is a disability; it is just the level thereof that varies. In terms of an ME/CFS disability scale, I am around 50 – 60% disabled.
From a gaining point of view, despite all the heartache and hardship, ME/CFS has enriched my life. There was a small ME Association in South Africa headed by the late Arlene Vermaak. She collected articles from across the world and issued a hard copy magazine quarterly. Arlene did a lot of work for ME awareness in South Africa but unfortunately died of cancer in 2015. As Facebook became a way to form online groups I started a support group on Facebook in November of 2012. It is also very difficult for ME/CFS patients to attend physical events.
Over the next few years, I became aware of the dire needs of patients for hope, companionship, financial assistance, medical treatment, special care facilities, and basic living necessities. This was pretty much the situation I was in as well. I have come across the most amazing people, very ill and in severe pain, but still very kind and as positive as can be.
The ME CFS Foundation South Africa NPO I realised something formal (and it had to be quick) had to be done for ME/CFS in South Africa and founded The ME CFS Foundation South Africa NPO together with my daughter (also suffering from ME/CFS). We are currently in the process to appoint our fifth director.
I found a new purpose in life, one of helping others in the same or worse situation we’re in. I function from home, sometimes on bad days from bed. I try to stick to my resting schedule, but there are still days where I am too ill to do anything. Knowing the suffering of fellow patients keeps me going and it has become my passion to make a positive difference in the lives of others with ME/CFS.
I have formed strong bonds with many fellow patients; some being extremely ill, many living in dire circumstances in need of urgent assistance. I will not rest until we have helped them. Each person reached makes all the hard work and sacrifice more than worth it.
We have patients in need of basic medical treatment, basic living necessities, accommodation, etc. At the moment there are no government disability benefits for ME/CFS patients in South Africa, to the best of my knowledge only one person has been successful applying for these and the amount is a mere R1 700 per month (₤90).
We have come a long way the (almost) past 3 years and have really progressed with raising awareness, educating the public and healthcare practitioners, helping patients getting diagnosed, assisting with basic necessities, counselling patients, providing support and hope through our online support group, was on several TV and radio programs and in a few newspapers/magazines, established relationships with awesome people (Sally and ME Foggy (with Kat) included), participated in small research projects, participated in #MillionsMissing , screened UNREST, etc. We are in the process of helping a ME/CFS and FM patient to be medically boarded by her insurer, this is a critical watershed matter and we HAVE to help her succeed.
However, we need help….
Fundraising is challenging in South Africa due to the ECONOMIC and POLITIICAL uncertainties and the current requirements by Government
We can issue Income tax receipts for donations for those living IN South Africa.
**** Foggy Followers, if you are able to help Retha and M.E/C.F.S patients in South Africa by donating to her charity, please click this link. The exchange rates make donations from other countries very beneficial.