a woman dealing with a sleep disturbance that is shaped like a lightening bolt going through her ears

When Illness Calls: A Tale of One Rare Disease

As a person with narcolepsy type 1, I am used to my life not looking like other people's. My average day with narcolepsy is slow, with at least 2 scheduled naps tucked in there for good measure.

However, in early December 2022, I had my first shingles outbreak. I felt somewhat recovered for a few days in January 2023. However, this soon ended. I am now in my second shingles flare. Living with this sickness, on top of my disabling rare disease that is narcolepsy, has been very difficult for many different reasons.

Why am I not getting better?

This is the question I kept asking myself throughout December and January. It wasn't until I voiced my concerns with my LGBTQ+ narcolepsy support group this past week that I received some insight.

"It took me months to recover from a chest cold last year," one of my group members said.

"Yeah, my doctor calls me immunocompromised now because of my narcolepsy," said another.

Well, there was my answer. Without the ability to stay in "deep" sleep, people with narcolepsy can have weaker immune systems. It is so frustrating that I had to learn this from a support group rather than my own doctor, who has been scratching their head all January, along with me (pun intended). When suffering from a condition like narcolepsy that affects your overall health, of course, you will be sick longer than the average person.

Managing shingles makes it harder to manage my rare disease

For example, I exercise regularly as a part of my personal narcolepsy symptom management. It helps me not be as depressed and helps me feel a bit more alert throughout the day. Exercise can even help improve my sleep quality.

However, exercising with shingles has not been possible. I am way too tired and in too much pain, with my shingles affecting my knee and leg. All of my energy for the day is allotted toward basic needs like hygiene, dishes, meals, and more. And even those don't always get completely finished. And not from a lack of trying, might I add.

Finding other ways to support my body

Along with nixing exercise from my schedule, I have had to increase my daily nap allotment. I am making sure to prep nutritious foods (and store the leftovers for quick nutritious meals for the rest of the week). I take herbal supplements, like echinacea tea, to help boost my immune system. Basically, I am trying to find ways to focus on the things within my control – and release what is out of my control.

'Normal' people have more energy to spare

While I've heard shingles is unpleasant, I can't help but think about the people making these comments. They probably wouldn't know what real exhaustion feels like – the kind that people with narcolepsy have that makes us see things that aren't there. Or other chronic rare diseases that can cause a myriad of symptoms for that matter. We are working with less energy than others. And when we get sick, it often shows.

It can be difficult to have a rare disease. Having a rare disease and another illness on top of it is even worse! How do you care for yourself when you are feeling under the weather? Do you use any strategies that I mentioned or didn't mention?

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