Narcolepsy – why happy matters
Sure, you can say happy matters but, why does it matter?
Narcolepsy is a disease/disorder/illness fueled by emotions. Many of us hear from our doctors, “Oh, you’re just depressed.” Um, of course we are, we have an orphan disease and you’re not helping us.
Whenever we hear someone say, it’s all in your head, we get so mad. How dare they?? But, the truth is, it is all in your head, specifically in your brain. You’re missing things that other people, who have normal sleep cycles, aren’t. So, you need to compensate for that.
Meds + narcolepsy = nightmare. No joke. Even if you’re able to find meds that help you function better, they’re not properly arming your brain to deal with narcolepsy.
“Be so strong that nothing can disturb your peace of mind.”
Norman Vincent Peale
When PWN are faced with emotion, it can drain us of what precious strength we’ve managed to muster. Be it sadness, anger, disappointment, embarrassment, etc. many of us need a nap just from experiencing those emotions.
You need to train your brain. To be strong. To process how you feel before you feel it.
Consider this very plausible, yet fictitious scenario: You have a doctors appointment. You’re so hyped to explain your symptoms and finally get some help. You wait, probably for an hour, to be seen; getting more tired along the way. Excitement again as you’re moved to an exam room and you wait, anxiously. Someone comes in, it’s the assistant. She asks you a few questions and you tell her everything, so glad to get it out. Then, more waiting. 20, 30 minutes, finally the doctor comes in and you’re so tired, already explained everything and now you have to do it again.
“Maybe it’s not narcolepsy, maybe you’re just depressed.” Cue full rage mode. You’re disappointed, angry, hurt and now, quite frankly, you’re just weary. You threw up all your emotions and now you just have an empty, sleepy stomach.
What if that could all go different with a little mental preparation?
“If the mind is fully saturated with something, whatever happens to the body does not affect the mind. The mind is even unaffected by the good or bad intentions of another, even as the firmly established mountain is not moved by the horns of a tiny beast.”
Start ignoring your tiny beasts. Waiting, fear, anxiety, people being disappointed in you because you can’t human like they can. Those feelings/emotions all come from what you think about while you’re going through processes. Consider the quote by Eleanor Roosevelt, “No one can make you feel inferior without your consent.” What she’s saying is, you only feel bad about what they’re saying because you’re allowing yourself to. Seem so simple but it’s actually incredibly challenging to reject that which others throw at you sometimes. “I’m everything you think I am, to you. But, your words do not define me, to me.” That one’s mine.
If some random stranger bumps you in the grocery store and calls you an idiot, you’ll just think, “No, you’re the idiot.” But if it’s your teacher, you’ll take that hard. Why? What is different? What we think about and the value we place on the opinions of others. That’s it. It’s the exact same stimulus, but one is easier to “ignore” than the other. Unless you train yourself otherwise.
Back to the doctor scenario, although you could apply this technique in a few scenarios, anticipate the situation will be untenable. Bring snacks. Seriously, snacks for your mind. Take a book, bookmark some funny videos, download an audio book – something to keep yourself distracted (and happy) while you wait, smile as much as possible. Ahead of time, write down everything you want to cover with the doctor, make a copy, bring both with you. When the assistant comes in, give them a copy, it will become part of your chart. You can tell them if you want it to be. Don’t get into too much detail conversing with the assistant because that person only makes notes, the doctor does not ask for their opinion on your issue so don’t bother. When the doc finally makes it in, expect nothing. Regardless of a doctors education, how many patients they are treating for narcolepsy, or even their understanding of narcolepsy, they still may not do anything of value for you. Why? Because no two people with N are the same. Two seemingly healthy people can both eat broccoli – one is fine, the other riddled with gas pain. Why would anyone think a treatment would work differently than something as simple as broccoli?
Be prepared mentally to be disappointed in the end result. Literally go in there thinking, this doc is not going to tell me anything new. This may seem counter to happy matters but it’s actually not. Managing disappointment helps keep you from being disappointed. If you do end up learning something or something positive comes out of it, great! But, if it doesn’t, you’re not having a cataplexy on the floor because you counted on help/relief/advice that never came.
Happy matters. It’s not just a kitschy phrase. More to come about changing your perceptions around many aspects of your life – family, friends, co-workers, etc. – to help you combat your symptoms before they start and to recover more quickly, if only mentally, afterwards.
In case you need some scientific evidence of this, here’s a study done by a doctor: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3595130/
The neurochemical changes underlying human emotions and social behavior are largely unknown. Here we report on the changes in the levels of two hypothalamic neuropeptides, hypocretin-1 (Hcrt-1) and melanin concentrating hormone (MCH), measured in the human amygdala. We show that Hcrt-1 levels are maximal during positive emotion, social interaction, and anger, behaviors that induce cataplexy in human narcoleptics. In contrast, MCH levels are minimal during social interaction, but are increased after eating. Both peptides are at minimal levels during periods of postoperative pain despite high levels of arousal. MCH levels increase at sleep onset, consistent with a role in sleep induction, whereas Hcrt-1 levels increase at wake onset, consistent with a role in wake induction. Levels of these two peptides in humans are not simply linked to arousal, but rather to specific emotions and state transitions. Other arousal systems may be similarly emotionally specialized.