It’s Not You – It’s M.E.

It started with my grades. They were slipping, and it didn’t make any sense. I remember clearly receiving the not-so-good marks of a biology test when I was 13. Then I fainted. I was sent home from school, and I slept. I slept on into the next day. I then got up, got ready, went downstairs, and promptly fell asleep on the living-room floor. Days like this kept happening. And my grades continued to slip. I was finding it hard to remember things. Words were hard to come by.  I even had this horrible pain in my heart and along my arm. I was exhausted.

I was diagnosed with Myalgic Encephalomyelitis, or M.E. Also known as Chronic Fatigue Syndrome.

The memory that stands out for me the most is this: I was off school (again). I was lying on the couch when I realised I was thirsty. I stood up and walked four steps across the room whereupon my legs gave in on me. I was too tired to move. Too tired to hold myself. I lay there and cried. I sobbed. There was no one else in the house. My dog, Rudi, came up to me and started barking. So much barking. When he realised no one was coming, he just curled into me and licked and licked. The phone rang a couple of times, but I couldn’t move. I really needed the bathroom. I eventually fell asleep. I don’t know how long I was on the floor for. I heard the front door open and my mum came running in. She sat down and hugged me. She said she knew something was wrong. She had tried to call the house and when I didn’t answer she left work as soon as she could. She had to lift me to the bathroom.

I tell that story to people who have coined M.E. as ‘lazyitis.’

I wasn’t a lazy person. Far from it. I was a hard worker. I would go into school when I could, even when I shouldn’t have. As soon as I had any energy I was out of the house, which was my downfall. Over-exertion one day meant two-three weeks in bed.

I didn’t sit exams that year, but as my teachers knew I was more than capable, I didn’t need to re-sit the year. I then did the rest of the exams over two years. I never did well, but I was determined to go to university. This was against the wishes of my family. “Get better first.” No thanks. The thinking at the time was that M.E. lasted about seven years. Now they say it never really leaves you. 13 years after that diagnoses I still get bouts of it. Not terrible bouts. But going to the gym is out of the question.

M.E. and CFS are hard to diagnose.

There is no definitive test. Some doctors even have a hard time admitting to its existence, to which I get very annoyed at. Though recently, scientists have discovered that there are differences in the brain between healthy people and those with M.E. Things are looking up, though there’s still no cure. (Read this article on IFLScience! for more information)

I did go to university. I even graduated. Not with honours, of course. And I did have to take a year out at one point. Holding on to a job was difficult, as was holding on to friends. They never understood the illness.

I’m feeling better now. Not 100%, but I can keep a job, though I’ve decided to go back to college to re-do all my school exams because my results have always bugged me. So here I am at 27 and doing my exams again. So far I’m coping, but still so far I’m hoping for a cure.

I would not wish M.E. upon my worst enemy.