When is Being Tired more than Laziness or Depression? My Personal Story
Posted: Tuesday, July 19, 2011
by Ingrid Weir
http://www.facebook.com/ingritaweir
Growing up, I remember clearly the embarrassment of wondering when a sleep attack would hit every bit as well as I remember laying there at night, staring at the ceiling while everyone else was sleeping away. The morning would come, and getting out of bed was darn near impossible. When I finally did wake up, it was all I could do to stay awake until the sunset, that is.
At 4 years old, I said to my mother, “Mom, why don’t people sleep during the day and stay awake at night?”
“Well, that just isn’t what people do,” she replied.
“But the bees are asleep at night time and awake during the day. If we were awake when the bees were asleep, we would never be stung!”How could she argue with that coming from her little girl, who loved playing barefoot in the clover fields and was covered with honeybee stings as a result?
So, we fast-forward to high school. I remember hating going to high school – not because I was bullied or it was a horrible experience by any means. I actually loved most of the people in high school and truly enjoyed learning. The part that I dreaded, however, was when I would be sitting in a class, and suddenly, the overwhelming urge to fall asleep would happen. It would come out of nowhere, but there was nothing I could do to stop it! No amount of NoDoz, ephedrine, coffee, etc. would help! Once I was about to fall asleep, that’s what was happening.
It was mortifying, so when I would feel it coming on ahead of time, there were times that I would sneak out of the school between classes and rush to the field behind my house. I couldn’t even make it all the way home most times. I still remember trying to explain to my mother, why I had a very odd sunburn on half of my body during February.
Going to the teenage pool hall around the corner, I would suddenly wake up under the pinball machine, or if I was lucky, in a friend’s car. Once I was older, driving to work or just running errands, I would have to leave early just to have time to pull over in a parking lot to take a nap before getting there. Driving a stick shift presented a particular challenge at stoplights. I would have to throw my car into neutral and pull up the emergency brake for just in case I nodded off – so I wouldn’t ram into the poor, unsuspecting driver in front of me.
This, of course, is to say nothing of my relationships with numerous Waffle House staff since they were the only people I could find, who could hang with me all night. The night terrors and nighttime paralysis were too much for me to stay at home, in bed, when I knew I couldn’t sleep anyway. This, of course, led to everyone saying how if I would just stop partying all night, then, I wouldn’t be so tired. Yeah, ain’t no party like a WaHo party! Woohoo!
Finally, some help!
At the age of 22, I am working at a new company, and I am going about my usual routine. You know, driving in to work early to pull my red vehicle behind the dumpster around the corner to take a nap… and then, taking lunch as soon as I knew I was going to be drooling on the keyboard.
Now, keep in mind that by this point, I was just sure I was incredibly lazy. Sure, I was working full-time, going to school full-time, and staying on the President’s List, but still, I must have been lazy since I never wanted to wake up, and once I was awake, I couldn’t stay that way. I didn’t feel like I was lazy, but obviously, I was since this was clearly my fault, right?
So, here I am, on my lunch break, napping in my car behind the dumpster again, and suddenly, there is a knock on my window. Of course, my exaggerated startle response made this absolutely terrifying for me, but that’s unimportant. I look up, and it’s the office manager.
She’s an elderly woman, who had spoken of how her husband had narcolepsy with an extreme case of cataplexy on a number of occasions. Of course, it never even dawned on me that I, too, could have this problem. Sure, I had a few instances where I would drop whatever was in my hands or suddenly feel like I was going to fall when I was really happy or upset, but I never really thought to take notice. It certainly wasn’t anything as debilitating as what her poor husband had been through his entire life!
She says to me, “Um, your boss needs you to come in right now. It’s important.”
“Okay, I’ll be right in.”
Later, she tells me that the project managers told her that she could find me out there on my lunch break, and she asks how long I had been doing that. I explained to her that it was pretty much my whole life – that when I wasn’t working night jobs, that this was the only way for me to make it through the day.
“Ingrid, I think you need to see a neurologist. I think you have narcolepsy.”
“No, I just get tired a lot, but I know when it’s going to happen, and I just take a nap. Then, I’m fine for a while.”
“Ingrid, do some research on narcolepsy and go to a neurologist, please.”So, at that, I start researching. Wow, here is an explanation for it all! Excessive Daytime Sleepiness, the night terrors, sleep paralysis (when you wake up from a dream, but you cannot move because your body still thinks you’re in REM sleep), hypnagogic hallucinations (feeling like you see things that aren’t there when you are falling asleep or waking up), the exaggerated startle response, insomnia, the dropping things in response to emotions, and the whole nine yards!
Naturally, I made an appointment with a neurologist where she immediately told me that she knew that I did, indeed, have narcolepsy. She explained to me all of the research she had, personally, done on the disorder, and she decided we should start treatment immediately since it was obviously dangerous for me to fall asleep while driving among other things. Obviously, she sent me in for more testing, which confirmed what we had all suspected at this point.
Now, it is over ten years later, and I still have to have my Ritalin prescription filled every month, which is frustrating since you have to pick up and bring in a new prescription every month for the rest of your life when you have narcolepsy. However, I wouldn’t change a thing. These little pills that cost me $8.00/month have changed my entire life.
I repeatedly see others in my life – friends, family, strangers I meet at the DMV, etc., whom I just know have either narcolepsy or sleep apnea, but most will not listen to me when I say to be tested. It seems there is a stigma attached to narcolepsy. I cannot understand why, though. It isn’t a mental illness (though no one should judge someone with a mental illness, who is seeking much needed help, of course). It is a neurological disorder, and it seems to run in familial clusters. This means that if you have a family member, who has it, there’s a greater chance that another family member will have it.
I cannot understand, for the life of me, why anyone would not find the treatment they need for this debilitating disorder. If you or someone you know have any of these symptoms, please seek treatment for it as soon as possible! It has literally changed my life into something I never even dreamed possible. Sure, I still have EDS episodes, the insomnia is still terrible some days, and so far, there is no cure. However, there is no way I could have continued the way that I was. The ability to be awake and know that you are not going to suddenly pass out is incredible!
When I was diagnosed, it took 14 years on average, for one to be diagnosed with narcolepsy – if ever – because doctors and patients alike had very little experience with the disorder. There is still a problem with patients being treated for depression and anxiety disorders, though, when they really simply have narcolepsy or sleep apnea. The statistics are looking up now, though!
If you or someone you know has any of these symptoms, please visit the Mayo Clinic’s page on narcolepsy at http://www.mayoclinic.com/health/narcolepsy/DS00345. Then, please go to a neurologist specializing in sleep disorders in your area. This could save your loved one or your life. I know I will be forever thankful for the person, who pointed it out to me and changed my life forever.
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Top-level comments on this article: (1 total)Hey Ingrid! Its a great article and information. Facts linked with real life strengthens any presentation that we present.
As a counselor I know how important it is for us to get a proper sleep at night, not in any other time. SLEEP is so so important. The time and the amount both are essential...
Anyway, I visited the website you have linked with the article to get more information on 'Narcolepsy'.
Thanks for sharing it and keep doing it...
ChiradeepThank you Chiradeep! Thank you for doing what you do and keeping your patients informed on how important sleep is!
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