"All You Do is Sleep"
As I sit here and try to put my life into words, I realize that I knew all along something was wrong with me. I was always tired but I always pushed my limits. Growing up, I played softball, basketball & soccer. I was always active. My summers were spent at conditioning camps where all we would do is run and play basketball. The camps motto was, "push yourself and you'll go that much further," so that is exactly what I did.
Suffering with sleep paralysis
I did not know what it meant to get a good night sleep because I never allowed myself to. However, when I did finally find the time to rest, I suffered from sleep paralysis. At the time I had no idea what it was; I just knew I was terrified to sleep. I would close my eyes and it would feel like a presence was over me but I could not move. I would try everything I could but no body part would move, my thoughts raced uncontrollably. I would press my eyelids so tight that it eventually forced my body to wake. I would dread sleep. Going into high school, I still stayed active and played sports. The sleep paralysis would come and go.
I never felt rested
Everyday I would wake up and never feel rested. I envied people who would come into school wide eyed and full of life but still I pressed on. I never missed a practice, a game or an exam. I would go to neurologists annually for MRI's and my primary doctor for bloodwork; only to find out I was fine and they do not see anything wrong. I would cry in private at how tired I was. College came and I struggled to stay awake in class. I was scolded by a few teachers who made comments asking me, "am I boring you?" There were days I would get home from soccer practice, shower and then awake on my floor. I had no recollection of falling asleep or how I got there. I can still recall to this day my ex boyfriend yelling at me, "all you do is sleep!" My life became harder and harder to bear. I still went undiagnosed and I graduated from college with my Bachelors by the skin of my teeth.
I went on to work full time jobs where I would hide, to the best of my ability, how tired I was. Anyone I confided in told me, "it is probably your thyroid" or "I experience the same thing its called being an adult." Then came the mild cataplexy; I would laugh so hard that I would lose control of my jaw & neck. My legs would feel like jelly. I would think to myself, please just stay on your feet, do not fall! What shook me the most was when I completely went paralyzed for what felt like three minutes. I was with my significant other and I laughed so hard that I slammed my head on the countertop and fell to the ground. I could hear him yelling my name and feel him grabbing my hand & proceeding to rest my head on his palm. I did not respond, I was yelling inside to myself to move, to say SOMETHING, ANYTHING but nothing.
Finally getting a diagnosis
I knew it was time to see a Specialist. I went for an overnight sleep study where I was then diagnosed immediately with Type 1 Narcolepsy with Cataplexy. The medicine definitely helps but I still have my days where it is so hard to get out of bed. I barely go out with friends any longer in fear that I will have a sleep attack or my cataplexy will kick in while laughing. When I speak to friends about what is going on they normally downplay it and/or make a joke out of it. Some ask about the medication since it made me lose weight, "you are so lucky, I wish I was on that medication, do you have extra pills?" It is extremely disheartening. I still push myself everyday and will continue to. I am trying my hardest to rebuild and readjust, as best as I can. It brings comfort being apart of this forum knowing that others understand. I will continue to spread awareness to those who may not. I am not sure of how my story will end but I do know that I will never give up!
Have you had similiar experiences? Share in the comments below
Do you ever take a nap in your car?