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 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 lumber puncture and hospitalized for over 8 days.
ME has affected every area of my life. I hardly meet 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. I work half-day, which is a huge strain, but 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 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 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….. very scary.