Sleep Petition

I have documented some of my everyday struggles as I try to balance the life I desire and the restraints of my narcolepsy. Most recently, I've had to admit that emergency napping is not the answer for my condition. My body requires a schedule and periods of rest in order to properly function.

For those who don't quite understand what my condition entails, here is a brief explanation. When falling asleep, there are four stages of rest for your mind and body before you enter REM sleep, which is when your brain is active and you dream. The average person takes more than 15 minutes in each stage, so it can take roughly 90 minutes of solid rest before a body slips into REM. That 90 minute window of mental and physical rest is when the body's musclular, neeurological, and immune systems heal and repair themselves.

For me, I enter REM on average in less that 5 minutes. During my test, there were at least two instances when my mind went into REM in less than a minute. That means while other people nightly receive 90 minutes of mental and physical rest, I receive 1-5 minutes. Periodic naps, up to three a day, helps restart the brain and allows it a reprieve for a few minutes in the hopes the body and mind might get a break. I've been told that skipping a nap is similar to other people functioning without sleep for 24 hours. This is my everyday and the damage that lack of rest does to the mind and body.

I recently documented my experience with a so-called health professional, who failed to comprehend the seriousness of my condition. This is just an example of how people with sleep disorders can be mistreated. I have been symptomatic for decades, yet was told repeatedly that I suffered from chronic fatigue, fibromyalgia, depression, and anxiety. I was regularly told it was all in my head and was dismissed. The months leading to my diagnosis, I thought I was losing my mental capabilities because it was a struggle to form sentences and remember things. It's scary to realize that if I had not forced the issue and switched doctors, to a woman who realized what my symptoms signified, I would have continued in the downward spiral of diminished mental capabilities. I could have injured myself or others because I was easily confused, slept for multiple days and lost track of time, physically collapsed in cataplexy episodes which is a form of paralysis (while in REM, your body is paralyzed), and suffered from hallucinations (When completely exhausted, the line between sleep and consciousness is thin and for a narcoleptic, the body can slip into a REM state though the person believes they are awake.). 

There is no cure or treatment for narolepsy. The no treatment is the worst part. The only thing the doctors can do is treat the main symptom, which is the daytime exhaustion. This requires the daily use of stimulants. For myself and others, these stimulants has triggered tachycardia, which is an elevated heart rate. Considering that my family is predisposed to have arterial difibrillation, which is further exasperated by the use of stimulants, I personally would prefer a different treatment plan. Yet, I can clearly state that I can not function without the stimulants.

This is my personal story of why I ask that everyone who knows me and anyone they can ask, to please sign this Raise Awareness of Sleep Disorders Petition. It is one step in the overall hopes that the medical profession, pharamceuticals, and employers will become more aware of these conditions and how lives are impacted by sleep disorders.