a woman falling down a dark hole

The War Between Sleeping and Dreaming

As a person with narcolepsy, I sleep a lot, and I am almost always sleepy. It is often a surprise to people when I say I do not enjoy sleeping.

When sleep is not restful or restorative

Do I enjoy the rare times when I sleep and wake up feeling refreshed as if I had hours of uninterrupted, deep, dreamless sleep? Yes, I do enjoy those times; but more often than not, if I dream, it’s vivid and intense and I am plagued by night terrors. I wake up drenched in sweat from night sweats.

Recently, I have had a ton of insomnia and can’t sleep, so I wake up exhausted. I would not call any of those things enjoyable, so sleeping is understandably not my favourite pastime. It is, instead, an essential requirement for my brain to function.

Needing to sleep, but not loving sleeping

Throughout the years I have spoken to many people who say things like, "You're so lucky. I can’t sleep in the day," and, "It must be nice to be able to sleep anywhere," or even, "I wish I could sleep more." It appears that, for some people, narcolepsy is just getting some extra sleep — which, in the crazy busy world we live in, is something people yearn for.

I cannot count the number of people I have spoken to who cannot comprehend how having a disease that makes me sleep more is even a problem. Who could understand how it affects my everyday personal and work life, let alone understand that it is possible to be sleepy and need more sleep without loving sleeping?

A hallucination led to me attacking my sister

A common symptom of narcolepsy is hallucinations. I have both hypnagogic and hypnopompic hallucinations. I have had them for what feels like most my life, although it has probably been mostly throughout my adult life.

I can remember times in my teenage years when I could have sworn there was a man in a hat at the foot of my bed. I have memories from my early newly-diagnosed days of attacking one of my sisters because I thought I was being chased by a flying rat and she would not move out of the way so we could get to safety. I gained strength (I was stronger than I typically am now) and started squeezing her. I could hear my mum screaming, "Joseph, she is killing her!" My dad came and separated us and pushed me toward the flying rat and took her to safety.

It was very scary. I fell on the floor, shaking and crying. The family remembers this event differently from me, but it is one of my most vivid hallucination memories.

Intense, vivid nightmares that feel real

For the longest time, even before I was diagnosed, I had intense vivid nightmares. I had dreams where I was being chased, assaulted, or attacked. Even if in the dream I felt detached, like I was watching it all like a movie or like an eagle flying above, I still felt everything: the fear, the panic, the pain the person felt when they were shot or stabbed.

The dreams don’t feel like dreams; they feel real, and it’s horrible and draining and something I wish I could eliminate.

Learning the cause of my hallucinations was physical, not spiritual

Growing up in a Christian household, I attributed the vivid dreams and hallucinations to demons affecting my sleep. When they first started, my parents would come and pray over me when I woke up screaming. This would help calm me back to sleep. In all the years I have been having these dreams and hallucinations, they have all been negative; any calming, beautiful singing I hear I attribute to angels, as I haven’t heard such a beautiful sound whilst awake.

Being told the cause of the vivid dreams and hallucinations (my narcolepsy) was a good moment. I felt less crazy; the things I was experiencing and feeling that others could not see or understand were validated. It was also nice to be reassured that my problems were physical, not spiritual.

For my parents, having a cause for my nightmares and hallucinations was a relief. It did not eliminate the worry or concern you have as a parent for your kid and their quality of life, but it was comforting to have an answer to why these things were happening, something physical and tangible.

Things that have helped reduce my night terrors

Knowing the cause is helpful but still doesn’t solve the problem. What makes it easier for me to manage is the medication that I take, which forces me into a deeper sleep quicker at night. This helps ensure I have a better quality of sleep, which has reduced the number of night terrors I have.

Learning about lucid dreaming

Another thing that has helped me is a skill I picked up at a narcolepsy conference. One particular session speaker taught us that if your night terror is in the form of a reoccurring dream, you can learn how to stop it; he suggested you can change the sequence of the dream by doing something different and then alter the outcome. He explained that because you already know the details of the dream (because you've had it before), you know how it is going to go, so you can find the point before the dream's plot turns and change it.

It took me a couple of tries to get it right, but I did find it works. In one of my reoccuring dreams, there is a bus stop just before all the horrible things happen. Instead of continuing on the journey, I decided to get off the bus, and the dream ended and I woke up.

Every night of peaceful sleep is a battle won

I remember being excited about this change and mentioning it to my sister, who coincidentally loves dreaming, and she was less impressed. As someone who regularly lucid dreams and has since childhood, she was surprised I could not already just stop the dream and alter it, that it was something I had to train myself to do.

The medication and the tricks I have developed over the years have helped to make sleeping less of a burden. I am nowhere close to winning this particular war, but every night of peaceful sleep does feel like one battle that I have won.

What do you do to help you get through your night terrors and hallucinations?

What tricks or habits have you had to develop in order to help you get a relatively peaceful night's sleep?

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