|M fell ill at the age of 16, had to leave school and stopped University as she became too ill. She misses fulfilling her life dream and ice skating! She finds it difficult that she’s been left behind.
|K “I was 13 and I was top of my class in school. I had an awesome group of friends, I belonged to a wonderful church youth group. I had everything going. Then one day I woke up and threw up and never got up again for 2 yrs. I became so ill that I was kept in a dark room; I couldn’t read, watch tv or listen to music. I couldn’t have friends over, I couldn’t go to school. I was diagnosed with M.E. and told there was nothing they could do for me. There was no cure or set medications to treat me with. I lost my friends my school my life. But, with lots of hard work my mom got me back to 50% functionality. I home educated myself, found a half day teaching job, eventually got married at 22, despite my parents not wanting me to. They had good reason though, as they didn’t want me to be hurt by a divorce caused by my illness, they didn’t want me to get severely ill again. But my husband knew all about my M.E. and he has loved me now for 20 yrs in sickness and in health. I had 3 beautiful children and perhaps because of them (pregnancy hormones) I went into remission for 13 wonderful yrs. I had a life again. I went back to studying teaching and graduated. I ran the pre-primary school I taught at. I also taught art to the primary school. I cooked, cleaned and had an awesome life. But, this was not to be a happily ever after story.
In 2010 I began to notice things. …my hands became so painful I couldn’t drive. My legs felt wobbly and weak, with creepy crawlies crawling around under my skin and in my muscles. I became fatigued, depressed anxious and suicidal. I began to suffer nausea and vomiting every day, I had vertigo, and various neurological complaints e g I couldn’t speak, I would jerk and shake etc. I spent more days in bed than at work. I was at the doctors at least once a week. I was sleeping almost all day and even that was not enough. Eventually I was told that I was suffering with full blown M.E. again. I was booked off work for 3 months bed rest. And when I returned to work I managed 2 months and then I was booked off again, and never returned. I am NOW a severe M.E. sufferer. I battle to live any kind of life now, I am house bound, I struggle to even do easy light weight tasks. But, my family love and support and believe in me. And that is why I’m here today!” K misses LIFE the way it should be! K also misses her house, at the moment she and her family are living in a CARAVAN at the backyard of people due to financial reasons!
ME/CFS is to fatigue what an atomic bomb is to a match – Laura Hillenbrand
Please help The ME CFS Foundation South Africa NPO achieves its objectives by donating to this worthy cause!
Nathalie fell ill when she was 16 years old, her condition deteriorated over 26 years and in the end she had to stop working, sell her house and moved back with her mother as she now also has severe ME/CFS. She can only function when she takes a special cocktail which gives her a little bit of energy so she can work for an hour or so during the day. However, she doesn’t have the funds for this costly supplement, thus she basically sleeps her life away. She is mostly bed but always house bound.
“The latest research needs to be taught to the Medical Profession (ALSO IN SA) as most doctors aren’t able to diagnose ME/CFS. Many patients, Nathalie included have been harmed tremendously by ignorance.”
R (53 years old) – A story of 37 YeaRS WITH me
“I had an extremely severe case of glandular fever in 1979 when I was 16…so much so that I was hospitalised a number of times. I simply never recovered. Only after 9 nightmarish years of searching did I finally find a neurologist who knew about ME and was able to diagnose me. Unfortunately I was very, very ill by then. Those 9 years contributed much to the severity of the ME in my case. I live with never-ending, totally debilitating exhaustion, frightening problems with my brain function, sensory overload because of hypersensitivity to things like sound, muscle and joint pain, constant and severe neuropathic pain throughout my body and a host of other things.
There are no ‘good’ days or periods of remission, no relief. ME has now been part of my life for 37 years.
I am 53 and totally housebound, mostly bedbound. I still live with my elderly parents. I have never been able to study or work formally. Most of what others take for granted have either never been part of my life or have slowly disappeared over time. I have never been able to study, be in a relationship, have a career or travel. I can’t drive, shop, watch a movie, read a book, go out for coffee, enjoy a meal with family or friends, or go on holiday. On most days I am unable to get dressed, because my pain levels are too high and dressing simply requires energy and strength I don’t have. As a result of my limitations, social contact has become almost non-existent. “ R misses the LIFE she COULD HAVE had!