I was a very healthy, active young girl who did every sport at school and got colours for swimming, athletics and netball. I also did ice-skating for Western Transvaal. Sport was my life.
At the age of 19, I fell ill with glandular fever and was totally bedridden for 6 weeks, but I never fully recovered. My energy levels remained very low and I was not able to lead a normal life again.
I was diagnosed with ME/CFS in 1990 by a Dr Alter Smit, who has since immigrated to Germany. She said it was a post-viral illness.
From the age of 20 to 24, I was on a disability pension. In 1995, I got slightly better and managed to hold down a half-day job, but it was not easy. Everyone expected a lot from me, but my energy levels were so low. I was not the person I used to be.
I have suffered 2 bouts of viral meningitis in 1998 and again in 2001. Both times I was given a lumbar puncture and hospitalized for over 8 days.
ME/CFS has affected every area of my life. I hardly meet up with friends and very seldom talk on the phone as I find it extremely exhausting. I cannot be in a relationship as there is no energy to be with anyone. Though it is a huge strain, I work half-day as I need to bring in money for rent and I have 3 children to support.
I suffer from brain fog and headaches every day and almost all areas of my body ache. I battle to digest most foods and have a constant stomach ache, sometimes so bad that I am hardly able to move. Any physical activity leaves me extremely exhausted so I have to pace myself constantly.
People don’t understand ME/CFS so it is hard to explain how absolutely exhausted we feel. We all seem to look well on the outside but feel awful on the inside. On many occasions, I am amazed that I wake up. Often I have thought this is the end, there is no more energy in my body to continue….. It is very scary!