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. 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.
ME/CFS is also an isolating illness. Telephone calls can be exhausting, so socialising is very difficult if not impossiblle. 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. 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.
Why did I co-found The ME CFS Foundation South Africa NPO? I realised something had to be done and co-founded The ME CFS Foundation South Africa NPO. 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 always have to religiously stick to my resting schedule and there are still days where I am too ill to do anything. Fortunately there are 3 other co-directors. Each person reached makes all the hard work and sacrifice more than worth it.