When life as we know it comes to an end

Retha Viviers
May 20, 2020
3 min read

Updated: Jun 28, 2020

"Living with ME/CFS, Cancer, chronic pain, lockdown in South Africa due to Covid-19

BLOG #4

WHEN LIFE AS WE KNOW IT COMES TO AN END...

May month is International Awareness month for illnesses such as ME (Myalgic Encephalomyelitis/Encephalopathy), unfortunately also referred to as Chronic Fatigue Syndrome. #MEAction started a movement a few years ago, called #MillionsMissing. There are literally millions of people around the world missing from their lives due to the illness ME. During May, we tell the stories of people who have gone missing from their lives.

Life as I knew it came to an END in 2008 as I went “missing” from my old life due to the illness ME. However, I started living a whole new life, mostly online, and came across the most amazing people. I even met some of them in person. I built a new life, a life filled with purpose. Naturally there were days I wanted things to be different, but all in all I have accepted living with a debilitating and devastating illness. Having access to a wonderful support system mostly online, made a huge difference in accepting a life with ME.

On 5 January 2020 my life as I knew it then came to an END... AGAIN, but this time OVERNIGHT

As I was very ill, I had 2 objectives. 1. Seek medical help, this was difficult due to financial limitations. 2. Get my affairs in order, including the continuation of The ME CFS Foundation South Africa NPO.

This time I went missing from absolutely EVERYTHING. I was too ill to do anything. I truly thought I was going to die during that time.

I was extremely fortunate that my precious ME friends started raising funds. I have never experienced such care and kindness from other human beings before, especially from the worldwide ME community. As you know, I am reacting extremely well to my chemotherapy and suddenly I COULD SEE A FUTURE AGAIN. I survived and shared my youngest daughter’s 20th birthday with her (she is in lockdown with us).

In between ME flare ups and quite horrible chemotherapy side effects I slowly but surely STARTED PLANNING A FUTURE AGAIN, albeit with ME AND CANCER this time.

Fast forward to midnight 26 March 2020 - South Africa goes into full lockdown to flatten the COVID-19 curve.

ONCE AGAIN LIFE AS I KNEW IT CAME TO AN END, again basically overnight.

This time, however, it is different: Healthy people are also missing from their lives. In future, the lucky ones will go on with their lives, even if it will be in a different way. (I am aware of the impact on the economy, unemployment, etc.)

Those of us with chronic illnesses will still be missing from our old lives, knowing very well that life as we will come to know it, can also come to an end at anytime.........

I sense fear growing inside me and I know I am not the only one as we are starting to realise that we no longer know whether we will be able to continue with our treatments. In my case, a treatment plan carefully designed by my oncologist, to get me to a point of remission.

Life as we know it can come to an end any minute....

My wish is that lockdown will give healthy people a glimpse into the lives of chronically ill people. May it result in better understanding of our lives and kindness towards the less fortunate...

Love Retha