The story of Agnieszka
I was on a camp, deep, deep in the forest with friends when I realised that in some special moments my knees started to live their own life. In fact, when I was walking and talking or walking and laughing, or I just wanted to say “hello” to anybody – my knees were binding suddenly. I found it strange but mostly ignored until I realised that last time I was etremely weak and kept spending every free moment sleeping. In three weeks time I become unable to walk, laught, partly talk because of so called catplexy – sudden loss of muscle tone!
It was the time of my summer practise in the hospital (I am a 22 years old student of medicine) , so I was sleeping every day on the lectures etc. The whole family tried to diagnose me then. Luckily I was etremely quickly diagnosed – after one month, though the medium time of diagnosing in my country is about 15 years (!). It came out to be narcolepsy with cataplexy.
At first I was so shocked – didn’t want to belive myself to be ill. I didn’t want it. I disagreed! No car, no horse riding, necesity to change my lifestyle. How about the studies?
Nowadays I see this in a totally different way.
My symptoms are weaker, much weaker than they used to be in the past even though I resigned from taking medicines (SSRIs, but I still take modafinil). The truth is that narcolepsy changed my whole life, but in a far better way. As a wise lesson of humility, but not only. Of course, I do sleep a lot every day. But my surrounding managed to accept it. I have a strong support of friends and family. The only thing I had to do is to take the challenge of my sleepness. And I hope myself to be an everyday winner!
Meet others who understand on the international Narcolepsy community on RareConnect.org: