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(Lynn Scurfield for The Globe and Mail)
(Lynn Scurfield for The Globe and Mail)

What it’s like … to perpetually forget Add to ...

This is part of a series that looks at extraordinary experiences in personal health. Share yours at health@globeandmail.com.

I was a real computer person. If there was something wrong with a computer, my co-workers would say, “Well, before we call anyone, let’s go to Kylie-Anne.”

After I got sick, though, everything that was so easy for me to understand before, my mind just couldn’t grasp it.

We got a basic computer program at work that was easy-peasy. But it was like a different language. It got so stressful because I was trying harder and harder and I couldn’t understand what was going on. I remember sitting at my desk and having fantasies about rolling up into a little ball and hiding under it. And I thought, “There’s something really wrong with this picture.”

It was mortifying. It was humiliating. It was degrading. Ever since I started working at 16, I worked really hard. I loved working. I was a problem solver. I loved figuring things out. I was a very strong-willed, disciplined person. It’s very, very difficult when your whole identity is wrapped in what you’ve accomplished.

I didn’t actually believe in chronic fatigue syndrome until I was diagnosed with it. Basically, everyone on the floor of my work came down with a nasty flu that knocked you out for a week or two. People would come back and be fine and get on with things. Well, I went down with the flu and I never, ever got back from it.

Chronic fatigue syndrome does something not only to your body, but to your thinking processes, and you become very easily confused. You just go completely blank. I got lost a couple of times while walking to work, and this had been a job I had been going to for some time. I’d been living in Calgary for a few years, so I knew the area well. And I got lost. On the way to work, for Pete’s sake! My boss actually had to drive and come and get me.

I used to have an extraordinarily good memory. But all of a sudden, I would lose the context of things. It was like seeing a page of print and watching words randomly fall out and leaving these blank spaces.

I’m not stupid by any means, but even to this day, if my partner asks me a question about something specific, I often have to say, “Okay, let me think about that and get back to you.” I have to poke my memory and wait until it kind of floats up.

Yesterday, I was typing an e-mail and I had put the kettle on and had put some breakfast on the stove – fortunately on low heat. Well, I was typing away and it wasn’t until my cat jumped on me that I noticed the smell of something cooking and thought, “I’d better see what’s going on.” The kettle was boiling madly. I didn’t even remember I had anything on the stove.

There are days I can’t remember how to put my makeup on, and I’ve been wearing makeup since I was 16. I have to stand there in front of the mirror and go, “Okay, the next step is … ?” It’s really annoying.

I used to actually write lists to myself and have them pinned up all over my apartment. Now, what I find kind of helps is I’ll faceplant: You lie on you bed face-down and just kind of let everything settle, and wait for periods of quietness until gradually your thoughts and memories come back and float to the surface. It’s kind of like meditation. When I relax and clear my mind, things kind of surface. I also have a partner who’s helpful. That makes a difference.

Kylie-Anne Deigratia Leske was diagnosed with chronic fatigue syndrome, or myalgic encephalomyelitis, in 1998. While it’s characterized by extreme, debilitating fatigue that persists in spite of rest, memory loss is also a symptom. The causes of chronic fatigue syndrome are unknown and there is no cure. Some studies have found it typically occurs among patients between the ages of 10 and 19, or between 30 and 39. Deigratia Leske now lives in Edmonton.

As told to Wency Leung

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