In 1990, when I was 16, I began experiencing strange symptoms like poor short-term memory, extreme tiredness and blackouts. I was incredibly lucky to have a GP who was aware of ME/CFS and, after running blood tests, he diagnosed me. I almost failed standard 9 as I missed a lot of school time, but managed to complete high school.
I went on to a successful career in IT as a usability analyst (IT-speak for someone who designs easy-to-use websites) and ended up working as a consultant, a job I loved. Over the years, I developed more and more symptoms and related conditions (e.g. underactive thyroid, insulin resistance, ) until eventually, in 2009, I started experiencing debilitating dizziness. By 2011, I was experiencing nausea and sweating whenever I was exposed to artificial light. In 2015, I had also begun to sweat and feel dizzy and nauseous whenever I was upright or using my brain (reading, working on my computer) for more than a few minutes. My ability to work had been on a steady decline from 2009, but by February 2015, I was completely housebound and unable to work.
Because I was a consultant and not a full-time employee, I wasn’t able to be medically boarded. I had an income protection policy but, because I was diagnosed at 16, ME/CFS was excluded as a pre-existing condition and I couldn’t claim. I had to sell my townhouse and everything I owned and move in with my mother.
Thankfully I have found a doctor who specialises in ME/CFS and stays up to date with the latest research, but the visits and the treatment she prescribes are expensive. My medication alone costs a few thousand rands a month, and we often can’t afford to get everything I need. Because the treatment consists of supplements, medical aid doesn’t pay for it. The supplements are prescribed at therapeutic doses, so they’re extremely costly. For example, Mitovive, the supplement that has had the greatest impact on my energy levels, costs over R1,800 for the 2 tubs I need every month.
Between medical expenses and lost earnings, ME/CFS has decimated me financially, but that isn’t the only cost. Like many others I have fertility problems caused by ME/CFS and can’t have children. Maintaining relationships is difficult when you often have to cancel plans because you aren’t well. So many of the things I used to enjoy, like going to the movies, eating out or going for coffee, dancing and reading, have become difficult or impossible. On a bad day, muscles throughout my body ache, I’m too tired to keep my eyes open, I have difficulty thinking and speaking clearly, just getting up makes me sweat and gasp for air, and I feel dizzy and nauseous. On a good day, I can venture out or work on my computer for an hour or two, at which point I start sweating and feeling dizzy and nauseous, so I have to take a nap.
I try to maintain a positive outlook and my sense of humour, but some days it’s extremely difficult. This is not the life I had planned. I have had to give up on so many dreams and put the rest on hold. I can only hope that it’s temporary.