Narcolepsy is my life: A Woman’s heart-wrenching struggle with narcolepsy
In high school (1998-2001)- there was always problems with waking up. My alarm would go off for hours, my sisters would be sooo mad because it woke them up, they would come into my room several times yelling, and yet, I’d still be sleeping away.
Come college (2001-2006), it became harder and harder to wake up…(esp. when I went away to college from 2004-2006)…my roommate would throw pillows at my head and yell until I finally woke up.
Of course, I would be late to class, try to organize myself and my belongings, and run into the classroom… pajamas on, hair a mess, eye crusts, eyes half open… pretty much still asleep. And again, for the millionth time explaining to the professor it was probably because of my allergy medicine, it knocked me out.
That was one class. Physiological Psychology class, I would get there 8:35 am, sit in the front by the wall, put my elbow on the desk and hand on my head… wake up, no one’s in the classroom, I’m drooling on myself, where am I? It’s noon! Psychology of Learning, 7:00pm class… I’m wide awake… I’m a night person, I’m always awake at night, this class should be good. Before you know it, I’m sleeping in that class too!!!
Haven’t I slept enough today?
I don’t want to fall asleep.
The next day, time for work. We would take trips to the movies sometimes… everyone in the car, seat belts on, start driving…. wake up Kelly ! we’re at the movies. HUH? Wake up Kelly the movie is over. What movie? Wake up Kelly we’re back at work.
Huhhhhh, why am I drooling. Why did you wake me up? Where am I?
OK, time to go home one weekend , hang out with my friends, go out, and do something fun.
At the time the big event for my friends and I was street racing. I love cars. I love racing! I loved going to watch these street races!
My friend picks me up we’re driving to the street race, Oh man I am so excited!!! We get to the parking lot, walk around, talk to lots of people, and check out cars. Time to follow the leader up the parkway until we get to the race spot.
This is awesome!!! What a great night, not too hot, not too cold !!! ( I remember these things now, like they were yesterday. )
Well… here I am in my friends car , he’s shaking the crap out of me! Kelly, wake up! Kelly, you tired? You keep passing out. Want to go home? blahblahblahablahbhalummauh. I mumble. Then before I know it I’m being shaken again, you’re home. We’re at the races? No Kelly we WERE there and they already raced, you were sleeping.
Went to my family doctor. (this was between 2004-2005).
Tried a couple anti-depressants.(although I was NOT depressed) Still not working. Made me nauseous. Made me withdraw. Made me feel sick. Spent money on the prescriptions just to throw a bunch of non-working pills down the toilet. Spent more money going back to the doctor explaining over and over again that I wasn’t depressed. I just can’t stay awake.
I try to stay awake and I just pass out. I hit myself, pinch myself, scratch myself, sing, hold my head out the window (if driving), run around, stretch, walk in circles, jumping jacks, move my feet/legs, draw, talk, clean, smoke cigarettes, drink more coffee, etc etc etc etc … nothing keeps me awake.
I don’t know what’s wrong. I don’t know what’s wrong with mee!!
Family doctor prescribed Adderall but, only until graduation then he is going to stop prescribing them to me and I am going to stop taking medication. (I’m probably tired because of school, work, stress, not enough sleep, boys, tests, graduation, partying, drinking, what- ever.) Yeeeaaah, probably. psh.
Until after college , graduated in May 2006 ( yay! ) got myself a full-time job ( yay? ) lol.
And now I’m falling asleep at work!!!!
Falling asleep at kitchen tables, sitting on the chair, on the couch, outside on the deck on a chair, outside of Starbucks, in the waiting room at their doctor’s appointment… ( I had one client, I use to walk in with 4 red bull *large* energy drinks, his mom use to look at me, my red bulls, and say Wow! you must REEEALLY like red bull!
Yeah, they are delicious. And don’t do shit for me.
And now I’m starting to fall asleep while driving. I am having the hardest time staying awake driving. I have pulled over to the side of the road to do jumping jacks, stretch, run around, walk around, “shake it out”, get some fresh air… these people driving by think I’m friggin crazy. What this girl just escape from the loony bin? What she doing?
Oh, and I’ve had to pull over and do this sometimes 10-20 minutes away from my home. I wasn’t going to make it there without falling asleep at the wheel. Thank god that never happened.
I got sent for all types of blood work… nothing. Got my eyes checked…perfect vision ( i thought. maybe it was my eyesight? I fall asleep reading, I have never read a full book, ever.).
Started keeping track of when it was hot out… maybe I fall asleep because my body hates being hot?
Even in air conditioner, winter, spring, and fall- this is happening.
Maybe I’ll track when it’s my “time of the month” maybe that has something to do with it
Still tired before, during, and after.
Joined a gym, went three days a week… still exhausted and falling asleep. Let me put myself on a sleep schedule, go to sleep and wake up the same time every night/day… that didn’t work either.
HA HA!!! Yeah right, I fall asleep (even for a 10-30min. nap and set my alarm)…I’m not getting up again. I’ve tried to take a nap let’s say about 4:30… didn’t wake up till 7 a.m. the next morning…feeling worse. Naps make me feel worse than I did all day, that’s of course, if I could wake up from a nap.
So, I think it’s time for a sleep study. I think I’m going insane. Maybe I have a real problem. Maybe I just have a psychological, psychiatric issue… I don’t know at this point.
Well, made an appointment and signed myself up for a sleep study.
Before the end of 2007, I found out that I had narcolepsy.
Still don’t know everything about it. Still having trouble staying awake during the day. STILL can NOT wake up!!!! (trust me, I got like 10 alarms and 5 people who call/text me every morning! I try to sleep different, different spots, positions, tried everything. Still can’t wake up!)
My medications are not working. My doctor won’t listen to me, let alone help. Why am I drinking so much coffee, Red Bull, and taking so many medications and I still can’t stay awake during the day. It takes me forever …I’d say anywhere between 12:00 and 4:00 sometimes not until 7:00-9:00pm … to finally feel “awake”. Strange I know.
Trust me, people say I’m crazy, look at me funny, and I’ve had people say I’m making this shit up. Trust me- I am not crazy nor am I making this shit up. I’m sure I could think of better things/stories to tell people if I wanted to make something up.
I struggle to wake up in the morning. When I finally realize it’s morning and need to get up, I struggle just to “wake up” and be “awake.”
I take my meds.
I drink my coffee and sometimes drink a Red Bull directly after.
My head is still foggy. I cant focus/pay attention. I’m ex-haust-ed! I don’t even feel “awake”. I cant even think. Sometimes I can’t talk right in the morning, I mumble, or I talk and it doesn’t make sense, my words wander.
People think I’m the biggest klutz in the world. I bump into shit, walk into walls, trip, drop shit, spill shit, knock things over, hit my head, hit my elbow, bang my feet, fall.
That usually occurs when I’m exhausted, and not “awake” I feel like a zombie. I feel like I sleep-walk through my day. I think people are looking at me like I haven’t slept in days, I have ugly bags under my eyes. One person said I look like a drug addict. ( I do NOT do drugs, just an FYI).
I fall asleep standing in line. My head drops, I need to walk around and “wake up” wow, that was in public. How embarrassing?!
I am physically drained. Absolutely NO energy at all, ever anymore. Physically, emotionally, and mentally wiped. I feel like I’m “draggin-ass” all day long. One day I literally climbed up the stairs into my apartment because I was so exhausted I could barely walk anymore. I’ve went from a ball of energy to dropping into a chair weak, no strength to stand, literally falling asleep, holding my eyes open, and slapping myself to stay awake until dinner’s ready.
This is all day long. I don’t want to go to sleep. I hate sleep. I hate being tired. I am tired ALL the time. I am scared that I won’t wake up. I want to be able to wake up. I don’t want to be late, I hate rushing, I hate being late.
Why can’t I wake up? Why can’t I be “normal”?? Why can’t I stay awake?? I am constantly struggling to stay awake. I am constantly struggling/fighting myself. I hate the way I feel. I feel like shit. I’m sooo exhausted. All the time!!! My eyes are so heavy. Sometimes my eyes burn. Why? I slept fine last night. I have no problems falling asleep. I have no problems staying asleep. I could probably sleep forever. This really suxx. I hate this.
This is really starting to ruin my life. My life is focused around all this. My life is trying to stay “awake” I can’t focus. I can’t pay attention. It’s so hard to concentrate. It’s extremely hard to finish a task. I usually bounce from task to task w/out completing them 100%.My life isn’t the same. I want “my old life” back. I want a “normal” life. I just want to be “normal” Why aren’t my meds. working? Why doesn’t 2-3 coffees a day wake me up? Why doesn’t 2-4 red bulls/energy drinks wake me up?
No “normal” person would be able to drink all that. How come I’m not awake. How come I can’t stay awake. I hate being tired all the time. I hate feeling exhausted. I drag-ass all day/night. I feel like mush. My legs, arms, my entire body is weak. I am physically tired. I push myself to keep going, walking… I keep myself occupied, talking, walking, busy, keep doing things, organize my room, do anything… keep myself “awake”.
People think I have all this energy, I don’t, it’s fake. I just try to pre-occupy myself by continually doing things, moving, and talking to try to stay awake. I can’t read a book; I fall asleep. I can’t stay on the computer too long, I fall asleep. I need to take breaks. Taking breaks from things I need to do is why I can’t get shit done. But if I don’t take breaks, I fall asleep. I don’t want to fall asleep.
I hate sleep. I am scared that I won’t wake up. I actually know I can’t wake up. I wish someone could help me. I wish I could wake up. I wish I could stay “awake” I wish I didn’t feel like this everyday.
Why doesn’t anything work? Why don’t the doctors help me, how come they don’t know, why won’t they change/increase my meds? Why don’t they understand I’m struggling? Why doesn’t anyone understand??? No one understands. No one gets it. They don’t know how I feel.
Why don’t they believe mee??
What’s wrong with me? I don’t even understand. It’s just so hard to explain. I feel so alone sometimes. Sometimes I am very frustrated with it all. I haven’t even really been going out at all, or hanging out with friends. What’s the point? I’m either going to be exhausted already or just get really exhausted and almost pass out at the bar or in the middle of a party.
Sometimes it takes me so long to wake up, get ready, actually be “awake” that it just gets too late, im still exhausted, and then there’s no point in going out.
At times, I do get upset, sad, a little depressed about it. Someone, anyone, please help me.
I hate this life. I hate sleep. I hate not being “Awake”
This is my life now. Welcome to my l i f e. Narcolepsy is my life.