Sleep Awareness week was this past week.
It’s fitting that this week, I had to confront some demons regarding sleep and how my disease affects me (even though I hate admitting I have weaknesses).
When I tell people I have narcolepsy I describe it by saying I am tired all the time (what do I mean by that?). They shrug it off like no big deal and so, I usually do as well.
However, lack of sleep makes daily life overwhelming. It causes social anxiety, social impairments, lack of decision making skills as well as rage. Why rage? When you are tired your body resorts to keeping you awake. The drug of choice floats in your adrenal glands. How does your body send out those endorphins?
The best way is to trigger the fight or flight response. Which means that suddenly you want to destroy the world because someone cut you off. Now, that’s not really how you feel, but that is how your brain interprets the rush of hormones surging through your body. You can’t help but scream obscenities at the idiot driver in front of you and you are out for blood. In the passenger’s seat your grandmother is desperately looking for a way to exit the vehicle while it is going 80 mph.
Adrenaline shuts down your frontal cortex because when you have to fight or flight it makes sense that you don’t need your higher brain questioning your decisions. You have to commit to what you decide to do. You can thank our ancestors for that subtle shift in brain chemistry.
Where are my resources for this information? Where did I find this out?
Simply speaking, I know this to be true because I live it every day. I live through these outbursts that make no sense. Rage shoots through my veins and I don’t know why; but I feel alive and 100% committed to my decisions which aren’t always smart. Euphoria hits me and I feel like I am on top of the world (sounds a bit like bipolar, right?) but the body can’t sustain high levels of adrenaline and so like any junkie I crash and exhaustion hits me. All the while, my mind looking for the next offense so that I can feel alive once again.
My body is a chemical war zone. It is inherently unbalanced because of the lack of hypocretin and my overzealous white blood cells. The upside- I rarely get sick but I’d prefer a few colds over not having hypocretin cells.
The other thing about narcolepsy is cataplexy. It is where the mind trips over itself. Without hypocretin cells my mind doesn’t always interpret stimuli correctly. Sometimes it can’t interpret stimuli at all and so, it sends out a signal to freeze while it tries to figure out what is going on.
The mind stumbles into a void between waking and sleeping- our conscious minds become trapped as our bodies fail us. We have no control over whether or not we stay standing or are able to speak. For us, we haven’t skipped a beat, but to those around us we stop speaking and stare into space or worse yet, we fall to the ground for no apparent reason. If I were watching me from the outside I would probably assume that I had some serious mental illness issues or that I was being dramatic for attention. Isn’t it sad that people see those with sleep disorders as fakers or wack jobs? If only they knew the truth. If only they knew how much we wanted to be “normal”; to be able to function without having to worry about whether or not a situation will send us into a narcoleptic/cataplectic attack.
One could say that our minds are too cerebral; too fixated on what lies beyond the physical world. One might suggest that our minds are so busy exploring life beyond reality that it forgets to take care of its physical self.
In truth, those of us who live with narcolepsy are stronger and far more resilient than most. For we can do exhausted what you do fully charged. We are able to conquer worlds while handicapped. Truly, those of us with narcolepsy should be proud of all we can accomplish for we’ve been chosen to prove how capable we are.
If you agree please share. If you don’t agree, tell me why in the comments.