Some people live in a tormented state of constant sleepiness regardless of how much sleep they get. Extreme daytime sleepiness is hard to understand unless you personally live life in the fog of a sleep disorder like narcolepsy. I’m
Everyone Gets Sleepy
When the alarm hails another day has begun, it’s not uncommon to groan and want to roll over. Possibly millions of people consider the snooze button the best thing since sliced bread. An extra ten minutes feels like a gift from heaven at that point.
“Ugh, ten more. Please.”
Ironically at the end of the workday, people cry for time to do just one more task. They’ve gotta work one more hour to get ahead.
Lack of sleep is a huge epidemic. Our fast-paced, high pressure, the dog-eat-dog pursuit of more, prevents us from being able to just rest. Almost everyone depends on coffee, energy drinks or some other method of staying alert. People try everything except the obvious; get better sleep.
Extreme Daytime Sleepiness is Not Normal
It is quite natural that when someone is found in a deep sleep on the bus, in a coffee shop or the cubicle next to you to immediately assume they need more sleep. Driven by compassion, it is a normal response to give unsolicited advice to someone who struggles to stay awake regularly. The intentions are good.
Unfortunately for some, there is no “getting better sleep” and going home to get some rest will not make us more alert tomorrow. For a person living with extreme daytime sleepiness caused by narcolepsy, there is no escaping the constant threat of a spontaneous nap.
This kind of sleepiness is uncontrollable. It is painful to fight. It is far more tormenting than “normal” sleepiness. Just because you are tired from a late-night, doesn’t mean that you could comprehend this level of sleepiness. Please, don’t tell me that you can understand how I feel.
Living with Narcolepsy is More than Sleep Deprivation
Having lived with narcolepsy myself for over 20 years I have heard all the advice too many times.
“Go home and get some sleep.”
“Why don’t that you can just go lay down.”
“Drink some more coffee.”
“Have you tried……(insert any sleep advice that you can imagine).” The answer is almost always yes.
Some of the most hurtful things I have been told was by people close to me.
“It’s just in your head.”
“You just need to get more exercise.”
The list of well-intentioned comments like this is nearly endless. I can almost always complete the most common sentences of advice.
Hearing things like this from one individual seems harmless enough. However, hearing it day in and day out from many, many people; becomes humiliating very quickly.
Understand Without the Advice
If that you can will, try to imagine being in an important meeting or class. Despite a captivating speaker or topic, that you can not keep your eyes open. Worse your head keeps bobbing and then that you can drop your notebook. When you stand up it only takes a moment before that you can catch yourself falling over. By then everyone in the room has noticed and they elbow each other, (or nudge you).
You know they are thinking that you can are very rude. The presenter feels insulted.
Adding insult to injury, 5 of your peers comment on it afterward. They give that you can the usual unsolicited advice that you have heard a million times before.
How do that you can defend yourself? How can that you can explain it differently than the 4 times before?
Help! I am Tormented by Extreme Daytime Sleepiness!
As I said before, that you can’t possibly understand the level of misery narcolepsy can cause. Unless you live with it. Unfortunately, you probably can’t give any helpful advice either.
The best way to help your narcoleptic neighbor is to just be supportive. Here are 5 ways you can help:
1. Please don’t draw more attention to the situation than already is occurring.
2. Cover for me (defend me) with others who don’t understand.
3. Don’t advise once I assure that you can I don’t need it.
4. Help me find a discreet way or place to take a cat nap when it’s needed. This may be every couple of hours.
5. Be I’m compassionate without hovering. Ask how that you can help.