Recovering With Narcolepsy: A Tale of 2 Conditions

Have you had the pleasure of getting shingles?

"Pleasure" is not the right word, of course. There is a lot of pain, itching, and an ugly red-bumped rash. Very couture.

I’ve been living with shingles and narcolepsy since December 2022. I am coming up on the 2-month mark any day now. Narcolepsy on its own can be difficult to live with, let alone the added malaise that comes with shingles! Living with both shingles and narcolepsy has been somewhat of a nightmare.

Inability to exercise has worsened my symptoms

Exercise is typically good for my narcolepsy. It helps give me a more balanced sleep-wake cycle, marginally. It boosts my mood. This is especially important for me because I suffer from major depression; 57 percent of people with narcolepsy also have depression, a higher prevalence than in people without narcolepsy.¹

When my physical health is worse and I am unable to get outside and walk, hike, or bike like I am used to, it is very depressing for me. As time has gone on, without being able to get outside or feeling well enough to walk around a grocery store, my depression has gotten worse. And when my depressive thoughts are worse, my narcolepsy symptoms often respond in kind. It’s been a spiraling cycle for almost 2 months now. I miss getting out and walking. I can’t wait for my shingles to leave so I can get outdoors again.

Increasingly disturbed sleep

Narcolepsy results in disturbed sleep for many people, including myself. Adding shingles on top of my narcolepsy symptoms has resulted in many sleepless nights of tossing and turning and waking up more exhausted the next day than when I went to bed the night before.

The pain in my joints and skin, for example, wakes me up from sleep or keeps me from staying asleep. I have to adjust my sleep position frequently and try to always sleep on my "good" (unaffected) side. This means that I am constantly being woken up from my already-meager narcolepsy sleep. Since deep sleep is the best tool for combatting illness, it is imperative for us to get extra sleep while healing from a secondary condition! However, narcolepsy makes that impossible or nearly impossible.

Needing more naps... and being okay with that

Speaking of sleep being important for the immune system, since my nighttime sleep is impacted by my shingles I make sure to supplement sleep with many daytime naps. It is hard enough to try to stay awake with narcolepsy without adding on the pain and general malaise that comes with shingles. I take frequent naps throughout the day to help keep my body strong and functional.

It can feel weird to go to sleep at 3 PM in the afternoon, but it is so worth the extra jolt of energy needed to close out the day. This means that napping helps give me the energy to do basic tasks like dishes, brushing teeth, bathing, and more.

Bolstering my immune system with nutritious food

During this time, I am making sure to cook lots of nutritious foods. Finding the energy to cook can be really hard, though. This is why I like cooking in bulk and saving leftovers in the fridge for the rest of the week. That way, all I have to do is reheat a bowl of food for dinner for the next 4 days.

Soup is especially good for illness. Last night, I made a delicious vegetarian broth spicy tofu lemon carrot soup to provide nutrients to my body and hopefully speed up the healing process. The pot is sitting in my fridge right now, calling to me...

When was the last time you got sick while having narcolepsy? How did you take care of yourself during that time?