Everyone gets tired, right?

One of the most basic misconception of narcolepsy is that us sufferers (which we most certainly are), can control our tiredness if we'd just try a little harder. That we somehow need to put just a bit more effort into staying awake and alert. If effort = consciousnesses, my life would be very different. Trust me when I say that I didn't want to nod off whilst on the back of the moped my ex and I hired on holiday, or drift off during a large family Sunday dinner, or miss countless films and TV programmes I really, really wanted see. I have far more embarrassing stories to share, but this is my first post and I'm not quite ready to recount cringe worthy moments of my life to strangers just yet! It's human nature to make comparisons to our own experiences, in order to try and understand/empathise with other peoples. However unless you have experienced narcolepsy or something very similar, then you won't be able to compare. Trust me, I did have a life before this weird thing happened to me and can. Often people will claim to be understanding, until an episode inconveniences them in some way. I've lost count of the times I've seen 'the look', willing me to make just a 'bit more effort' and try just 'a little bit harder'. Now I have a platform to voice my thoughts, I'd like to respond to this....

Like most people, I ignore all signs of feeling tired initially. Its not convenient to rest; life is too busy for a break every time you feel a little tired. Also I'm stubborn and continually under some illusion that there will be a time that I can beat it and will stop an episode from occurring through will power alone. So I continue with whatever task I happen to be doing, but make every effort to make myself feel uncomfortable. If i'm in an environment where I have to sit, I'll choose the hardest, most uncomfortable looking chair and remove items of clothing (whilst remaining decent of course) to make myself cold. I try to keep myself focused and alert by paying extra attention to what people around me are saying. Despite my efforts the haze continues to settle, until it reaches a point where its can't be ignored. So begins the discrete, private battle.

If i'm in public, I will discretely pinch my legs, arms; digging nails into my skin. If i'm able to make my excuses and slip away from the eyes of others, I will slap myself....my legs, arms, face. All repeatedly and all with the intention of jolting my body away from an impending slumber. Usually this buys me a few minutes, so I pinch, slap and dig harder; refusing to be beaten. Yet every time I am. Every time, I lose the fight. And every time that an episode is out of my control, it feels like a failure. It doesn't matter what I do to try to prolong consciousness, I will fall asleep anyway regardless of the activity I am undertaking; sometimes continuing with the activity whilst asleep (I have some hilarious lecture notes!). Because I have fought, not listened to my body so that I can 'put the extra effort in'; the episode will be out of my control and end in some embarrassing or unsafe way.

But wait, I haven't finished. This is just one small part of a much bigger pattern. Upon waking, I will shake off any embarrassment and resolve to try harder next time. Again, again and again. Digging nails into my skin for longer and harder, finding new ways to make myself feel uncomfortable. This pattern pushes my body beyond the boundaries of its limitations. My body sends warning signals to stop, with vision disturbances being just one of many. Eventually the predictable pain in my head will begin. It is only when the pain from a migraine forces me to stop, that I admit defeat. At this point, all sometimes all I can do is hide away for hours in a dark, quiet room. Occasionally days. This is 'putting in a bit more effort'; something that I did for many years and for many reasons. Myself and others try so hard at times, we make ourselves ill. So I ask...could we try any harder?