This endlessly strange life became oh so much stranger last year when I was hit hard with an as of yet undiagnosed condition that in every way seems to be a very severe “late onset” case of “Type 1 Narcolepsy.
In this video you can observe many examples of my symptoms such as EDS (exsessive daytime sleepiness), Sleep-Attack, Micro-Sleep, and various forms of Cataplexy which untreated make normal functioning impossible.
So why the post title “The Narcolepsy Trap”? It has several layers of meaning…
First of all it describes how I see the process of diagnosis. A tentative diagnosis of narcolepsy sets into motion an epic cycle of being passed from specialist to specialist, often for years. It loops around and around, the diagnosis always seeming to be just ahead. The carrot you are chasing is the end of the diagnosis process. You just want it to be over because without that diagnosis your symptoms may not be treated as serious, or worse – they may even be seen as “not real”
Another trap aspect of narcolepsy is the condition itself. The symptoms of sleepiness, weakness, and paralysis etc are agrivated and made worse by stress and anxiety. Consider then what stress and anxiety can come from that potentially endless process of attaining and maintaining the diagnosis. The combination is a kind of torture… with many just eventually giving up.
An additional terrible truth is that even the symptoms THEMSELVES cause stress and anxiey. Triggered symptoms that create their own triggers? Now that’s what I call a trap!