My Narcoleptic Life

I have struggled with excessive daytime sleepiness all of my life. I have always fallen asleep in class and dropped out in the eigth grade due to lack of comprehension, disciplinary issues throughout gradeschool, and never being able to retain anything because I would always fall asleep when the teacher was trying to tutor me or talking to anyone.

I earned my GED when I was 16, enrolled in a college at 17, was kicked out due to a sexual assault issue that was blamed on me and called my 'disciplinary problem' (really the school didn't want bad publicity but they were nationally accredited so it didn't matter anyhow). I joined the Navy and fast forward 4 years later, found myself back in school again as an online student. It went relatively well until I decided I didn't want that degree and I got off of active duty and joined the Reserves.

I find myself back in college now as a hopeful nursing student. I have earned my A.A. and am working on my A.S. completing my prerequisites for nursing school. I work part time (20 hours a week), one weekend a month and two full weeks out of the year (for the reserves), am a mother to a 14 month old beautiful, amazing, smart, lovely babygirl, and wife to a loving and wonderful husband (5 years this July). That is certainly not all my titles as I'm also an aunt, a daughter, a friend to several people of course, a neice, etc...those are just the ones that require most of my attention and I gladly give said attention to.

Anyhow, I had a sleep study done in December 2012 for what I thought was sleep apnea. It turns out that I am borderline narcoleptic according to the VA Hospital. I have my second sleep study here soon and hopefully after this they will give me provigil.

Note: I also have endometriosis and possibly PCOS so I'm not sure how much of a contribution to my level of tiredness that these things have. One doctor said I do not have PCOS while another one did and I still have a lot of pain and fatigue now that the endometriosis is coming back. (Confirmed by ultrasound a few months ago).

I have the worst time with memory, organization, staying awake in class, at work, etc. I am constantly getting yelled at by my boss because I always seem confused and/or I forget things that come easily to most.

I am struggling with self-esteem at the moment because this is three times in the last week she has pretty much made me feel less than two inches tall. Just this morning I was late for work because I let me toddler have my keys and they got hidden underneath the couch (although I *swear* I looked there a thousand and one times) and I was rushing as usual to prep food for the day and get ready.

My husband says I need to get ready the night before but by 8 pm when my daughter goes to bed, I can barely keep my eyes open no matter how much sleep I got the night before. I also get up at around 4:30-5:00 a.m. to work out and I eat relatively healthy. (I've lost 98 lbs since my daughter was born) so I know for a fact it's not my diet or lack of exercise. I also sleep around 7:30-8:00 hours a night. (I have a sleep log app on my phone.)

I fall asleep during conversations with my husband. It's not him...I just can't help it. I've fallen asleep driving home from work twice in two consecutive days last month (or the month before.) Thankfully I didn't crash but when I "woke up" other drivers were staying away from me and looking at me funny.

I struggle to stay awake in class and I take an absurd amount of diet pills for the caffiene which doesn't really even work anymore because I've been taking them for so long. I've tried not taking them to let my system reset and it's like the atmosphere is this sticky syrup I can barely drag myself through and everything seems surreal because I just cannot wake up. I feel so sleepy all the time no matter what the situation and it is really starting to wear on my mood because I just want to be normal.

I cannot remember anything. They tell me that it's due to the narcolepsy but I'm not sure it's not ADD. They said to deal with it first and see if the medication helps me. However I read someone elses post just a few moments ago and I'm scared that it will decrease in effectiveness over time. I am currently enlisted in the Navy and I hope to become an officer once I receive my Bachelors. However, you cannot obviously be a nurse or in the Navy if you fall asleep all the time. It's obviously a safety issue.

I always hesitate to tell anyone for fear of repercussions and simply being laughed at. Narcolepsy is something that happens to "everyone else." I once was in trouble for falling asleep all the time in A-school (Navy term for the school for our assigned job) and they joked with me "Are you narcoleptic?!" At that time my answer was of course "no" to which now I could probably answer an embarrassed "yes."

I feel so alone and depressed because no matter what I do, I just can't seem to get my stuff together and I don't know whether it's due to narcolepsy or if I'm just defective in some way. Does anyone else have problems with memory/organization/getting in trouble at work/having problems in college?
SusieQ2013 SusieQ2013
3 Responses Jan 23, 2013

I had problems in high school AND college. I barely graduated from high school, due to being late for my first class almost every day not wanting to get up. I gave up on college because I just couldn't handle the work load and the commute, which was a 15 minute drive there and back.

I have a cosmetology license that I am not currently using because at work, though I didn't have many hours, I could not get clients because I was generally groggy and I had forgotten how to do some things effectively over time. I can't focus and I can't remember peoples' names and faces. It was like I was a zombie at work. Not to mention if you don't make commision, you get minimum wage.

I can relate to you on the kid aspect. Once my kids are asleep (I have two toddlers), I hardly have time to chill with my husband and get chores done before I'm out on the couch. It's like I have no life because when I'm awake I'm just trying to let the people in my life know I'm still interested.

Lack of sleep does all of that to the brain. I used to suffer from migraines, sensitivity to light, lethargy, loss of concentration, & problems with short-term memory. Now that I'm treating my condition, those issues have pretty much all cleared up. (Well, except for some of the concentration & memory, but I am also diagnosed with ADHD.) It's normal to feel depressed and frustrated about it, I still struggle with college and staying organized. But I think if you find a doctor to start trying treatments, things should only get better.

All of the above :)