Giving up my fear of death – Going beyond coping with narcolepsy

From witches coming out of the closet, to people coming into your house and brushing their teeth, to elephants traipsing through the bedroom, to feeling like you’re battling for your very soul… having narcolepsy can come with some pretty terrifying hallucinations and nightmares.

Being able to fall asleep quickly, and drop almost straight into REM is a recipe for hallucination. I can reach REM in less than 60 seconds, and often start to ‘dream’ while still awake. In my teens and 20’s it was terrifying. Over and over I would have this same experience where I heard a freight train noise and felt myself trying to lift off the bed and I knew, if I didn’t open my eyes right at that moment, my soul would be stolen from me. That’s how real it feels.

After living with awake and asleep hallucinations – visual, auditory and olfactory – for decades now, I can say I’ve somewhat gotten used to them. Like some sort of ghost whisperer without the ghosts… I’ve accepted that experiencing one or more of the above scenarios is a likely occurrence. That acceptance came from years and years of trying different coping techniques to simply help my brain understand faster that none of it’s real. Once it kicks in that it’s not real, it’s a lot easier to call upon that in the future until it becomes your normal. So, how do you do that? By giving up your fear of what’s come for you. Simple, but not so much really.

Every work day I take a 40 minute nap in my car. Years ago I did the 3 bears version of nap timing and found that 20 minutes was too short, 60 minutes was too long and 40 minutes was just right ;). Many days I feel awake enough that I could push through my scheduled afternoon nap, but I don’t because it just makes my fibro mad and we don’t want to be around when the fibro’s mad… As I don’t have my sleep chocolate for my naps to control my movements, I spend almost the entire time in and out of REM, dreaming about work related things. I rely on “trust,” trusting that: I’m locked in my car and safe, I know the people in the surrounding buildings keep an eye on the lot and the people in my office know where I am and will come get me if there really is an earthquake, not just a dreamquake. I wear headphones set to 40 minutes of cello music (this helps me keep time too), I have a neck pillow, I cover my eyes with a scarf, and trust that nothing that happens before my alarm goes off is “real.”

None of it’s real, not the people getting in and out of my car, not the people knocking on the window, not the car getting towed. So, I ignore it all. It’s hard enough that I dream about my job the whole time lol, looking through the warehouse for things… not being able to find my car! That’s the funniest one to me. Constantly I dream I’m in a parking lot looking for my car and all this ridiculous drama is going on around me and I’m late to get my kids and I’m so frustrated and then I wake up… in my car. “There you are!!” Often I’m able to go lucid in these frustrating dreams but I don’t necessarily know that I’m dreaming. Still trying to figure out a way around that one. Like, understanding – hey, you can fly – so maybe the rest of this isn’t really happening either? It’s a process I guess ;).

With scary stuff however, I am now pretty good at confronting or ending the dream/hallucination. One night, many years ago, I was dreaming I was like Spiderman, hopping from rooftop to rooftop, having a great time. Suddenly a giant ogre appeared, like a 2 story building looming over me. I tried to hop away… hop, hop… he followed. Every jump he was one jump behind me. I was getting so tired. Finally, like when you’re totally fed up with your kid’s not listening to you, I boomed out at the ogre… “Look, I’m tired. Really tired. And, I have to work in the morning, so I really need some rest. If you’re going to eat me, eat me and if not, go away.” The dream dissolved. I was so tired I just didn’t care anymore and that was my ticket to overcoming hallucinations and night terrors.

Just the other day I spoke with someone about the old TV show called Quantum Leap.

At the end of each episode the main character would leap through time into a new character’s body and life. The following episode would start with him assessing what life he’d leapt into – Who was he? When was he? What was his mission? And he’d have to wing it while he figured it out. I often joke the narcolepsy is the quantum leap disorder – upon awakening I often look out into the room like a kidnap victim… What’s happened? Where am I? Am I safe? Was I supposed to be sleeping? Is it day or night? What day or night? What am I supposed to be doing right now? It all happens in a split second but after you go through that about 16,000 times, you kind of get used to it lol. Treating it with a bit of humor… “Sam Beckett here, what’s the situation?” Helps you overcome the sheer ridiculousness of it all. Your life is like a 90s TV show… at least it’s an interesting one.

You have to focus on being aware of what is real. Put things in place to help you. Example, I cover my eyes with a soft shirt or scarf every time I sleep. My hallucinations come more when falling asleep and when napping. I know where I am, I know I’m safe, so I cover my eyes, headphones in – music on, covered up, and I focus on resting. If I hear something I ignore it, if others are in the house I know they’ll come get me if they need me. I ignore phones ringing (I know my ringer is off), knocks on the door (the dog would be going mad if it was real), people talking to me (my kids know to touch me gently if there’s an emergency) and anything I might ‘see’ (my eyes are covered, I can only see t-shirt or scarf). Then, get the focus off of me, and my thoughts, and work on quieting my mind. If you haven’t learned how to quiet your mind, I personally think that is toward the number one thing a person with narcolepsy can do to help with their symptoms. What you think about affects your moods, your moods affect your emotions, your emotions affect your narcolepsy. Keeping calm and positive will help keep you from suffering your thoughts.

Kill the TV. Most people who sleep with a TV on do not realize that the sounds and lights coming from the TV can affect the quality of their sleep and their dreams. You’ll dream about things your brain is listening to while you sleep and, if it’s the news, it could get scary. The flashing lights are also not good while sleeping, just because your eyes are closed does not mean the flashing lights are not signaling to your brain to pay attention. If you must sleep with noise and light, consider a dim table lamp and either headphones with instrumental, positive music or a white noise machine. Try it for a month. If after 28 days you see zero difference with your sleep, dreams or the quality of either, go back to it. Not a big sacrifice to see if it affects you positively. My hubby has insomnia and used to sleep with the TV on, 2 – 3 hours a night if he was lucky. Up and down all night. Once we got the flashing lights off, his sleep increased to 3-4 hours. Every little bit makes a difference.

Covering your eyes. I personally do not like sleep masks, they scare me lol. I think about the scene in the movie Matilda where Rhea Pearlman sits up with her sleep mask on, huge unblinking eyes affixed to the outside. She couldn’t see, she had to lift it up. And, she missed little Matilda heading into the bathroom to put something in the shampoo. I need to be able to see when I sit up. Sometimes my dreams are so hyper realistic I desperately need to ‘see’ my current reality. So, I use a soft t-shirt or a scarf that fall of when I move around. Again, try it. If it works, keep it. If it doesn’t, not a huge sacrifice on your part.

Trust, this is the kicker of it all because you can tell yourself, “it’s not real,” but unless you trust yourself, you’re still going to anxiety all over the place. If you are somewhere safe, if you are not alone, if you are supposed to be sleeping – these are the best times to practice “trust.” Trusting that you are safe, you are not alone and you are supposed to be sleeping – everything else should be ignored.

This coping technique is solidified by giving up your fear of death. It’s completely ignoring (or confronting) that which is coming for you, whether you believe it to be real, or imagined – knowing that the absolute worst case scenario is that you die. To make light of it I joke that death just means I’ll finally get some real rest. Truth be told, we never know when we’re going to die, we only know that we all will. If you spend your life being afraid of dying, you don’t get to do much living. Accept it. Accept that you’re going to die one way or another, at one time or another and if it comes at the hands of the gorillas hanging from your bedroom ceiling fan, then so be it.

Your brain is giving you fearful images for a reason. See if you can figure out why. Are you looking at something during the day that is feeding into your dreams? I know all it takes is one stupid zombie meme in my Facebook feed and I’m battling zombies at night. I’m a lucid dreamer so I can take them all out with my freeze breath, but dreaming about my daughter can have me waking up bawling. That’s when it’s really important to completely change gears upon waking. Sad, scared, angry – however you awaken from a bad dream, ground yourself in reality immediately upon waking. I grab my phone, hit Facebook and just start scrolling through my feed. I have great friends who post fun, interesting things and help me ground myself back to reality. If I’m not alone I might talk about my experience with whomever is nearby but most people can’t comprehend the level of crazy in my dreams, so I just try to forget them as I fill my head with puppy videos, friend’s posts, etc. Pull a Taylor Swift and just shake it off, shake it off. Music is a great one too. You can wake up after battling aliens and pump your head full of your favorite song, turn on the TV, phone a friend, walk around… Whatever it takes to overwrite the bad with the good. Get positively delusional about your negative delusions.

Happy matters. It’s been studied. The sooner you shake off the unhappy and get yourself back to at least a baseline, the sooner you will recover from the trauma of the dream/hallucination.

If you’ve got tips for coping with HH, SP and nightmares, please feel free to share. It really does take a village.

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