I guess one of the things that impacts my life on a day-to-day with narcolepsy is that I never know when I’m going to have a sleep attack, or when I’ll suddenly just feel that irresistible urge to sleep. So that makes it very difficult to plan ahead and to just make plans with friends and that sort of thing because I never know if I’m actually going to be able to make it, or if I’m going to have to cancel, last minute. And I guess what we’ve done to adjust to that is to always keep plans fluid. They’re never rock-solid plans. Thankfully, my husband is very supportive and he’s very flexible as far as plans go as well. So if we were planning to have a date night or planning this or that and we need to cancel, he’s very understanding about that.

Narcolepsy has made it difficult for me to feel well-rested and get up early in the morning. Sometimes it’s difficult to get out of bed, no matter how early I go or how much medicine I take I never feel fully rested. It makes it difficult to get things done sometimes. Makes it difficult during the workday, sometimes I have to stop to take a nap. My medicine has helped me in a lot of ways to overcome these obstacles, but sometimes I still do have symptom.

Well, since I’ve had narcolepsy for about 22 years, I’ve kind of gotten used to how it impacts my day to day, but most of what it does is it really affects my … I have insomnia, so it’s hard for me to go to bed sometimes, but also it just makes me feel tired all the time, and it’s just hard to want to do much of anything around the house when you are tired. You just don’t have any energy. I am also a shift worker, so that actually makes it even more difficult to do anything. I work evenings and nights and sometimes during the day, so what I’ve done is just try to just take a nap when I need them, and I just listen to what my body’s trying to tell me. When it’s time to take a nap, I take a nap.

I have trouble getting most anything done. I just finished my undergraduate degree. It took me an extra year. I was undiagnosed until the end of that, and I had an extremely hard time studying. I had no study skills. I was unable to stay awake in classes. So I often did not go to them. I had no work ethic. I was unable to get assignments done on time. I had to take a nap, usually multiple naps during the day to be okay. I was constantly skipping, going out seeing people or making friends, a lot of people that I was lazy. I had a hard time keeping a steady job. I still do. I’m very depressed and don’t leave my house very often.

The frustrations of having narcolepsy are like, as I’m still tired. Even with the medication to keep me awake, I still have to be cautious of not going to sleep. And the frustrations are I have young kids. And I need to be alert for them at all times. And that’s really hard to do. And the challenges, again, it’s just make sure I get enough sleep during the day, go to sleep. And when I’m with them, it’s stay awake.

My biggest difficulty is just having the attention to focus on things and that I become fatigued and just my body constantly wanting to take a nap at just any kind of exertion. Trying to limit my caffeine intake and started to try different medications that my doctor has prescribed to find something that will work. Currently, I’m going to be starting on Sunosi and see how well that works. Having narcolepsy impacts my mood and a lot of the day-to-day functionalities of life.

I have been diagnosed with narcolepsy for two years. And prior to that it, well and still most days, it’s very difficult to go through a normal day without just falling asleep. Which can be really disconcerting, especially in the workplace, where it’s not as acceptable, people don’t seem to understand. And sometimes it seems like people don’t consider my diagnosis to be a “real” diagnosis. And I feel like it sometimes comes across like I’m lazy or I’m doing things that would cause me to not get the sleep that I need. I’ve also been accused at times of being on drugs and passing out. So, there’s just a lot of stigma, I think, associated to narcolepsy in general, and how misunderstood it is. So, what I try to do is, educate people as best I can and inform them upon meeting them, especially if I’m going to be working with them or relating with them on a regular basis, and let them know that I do have that diagnosis. I’ve quit trying to hide it and I’ve tried to be more open and honest about it and help people understand what to expect. And I feel like since I’ve started doing that, it’s helped, but it still is difficult some days, when I am just unable to literally keep my eyes open and I won’t even realize that I’ll be sitting there working and then suddenly I’ll come to, and it’s been an hour, and I’ve been sitting up asleep. And that can get really frustrating.

Narcolepsy has affected my life mainly with being able to plan ahead, depending on how tired that I am. As well as keeping a routine, because sometimes I’ll have many time for naps. So it affects my relationships all around.

Narcolepsy affects my everyday life. I am always tired. I have a hard time waking up. Sometimes I’m very groggy. My dreams are very vivid to the point that I don’t know if it really happened in real life or not. I have to keep constant reminders of things I need to do or I will just be tired all day, and I could nap all day. I feel like my days are wasted. After naps, sometimes I feel better, sometimes I don’t. I’m crabby when I’m tired, I’m crabby after somebody wakes me up. I’ve had to buy several alarm clocks. I had to subscribe to different apps to wake me up in the morning. I had to change my work schedule. It’s just constantly it’s getting in the way of everything. I can’t have set appointments because if I’m too tired, I have to cancel them because it’s not safe for me to drive, that sort of thing.

I have to always be prepared especially when it comes to taking a nap. I always have a pillow and blanket in my car. So I feel that I cannot be spontaneous because of that but at least I feel more safe and secure knowing that I can prepare just in case I get tired.

Daytime sleepiness. I’ve had to adjust my sleep cycle. Before COVID, I would come home from work and have to take a short nap before I continued with my day.

Our day to day life has changed because I’m unable to drive. So we’ve had to adjust by getting family and friends to run me on errands, run me to doctor’s appointments. Grocery shoppings had to be pushed to the weekends. Doctor’s appointments have to be scheduled around when we can get rides. If I have a cataplectic event, making sure that I am safe. Then I get a hold of somebody, make sure they know that I am safe. If I have any injuries, they come and check on me, see if I need to go to the doctor. Making sure I rest enough. I think that’s pretty much it.

I have a difficult time staying awake during the day. So sometimes I have to adjust my sleep schedule and take naps when I am tired.

Some frustrations or challenges that I experience with narcolepsy is that I am constantly tired. I used to fall asleep even when I was driving. Some things that I’ve done to help is that I just have to make myself take naps, even though I hate taking naps during the day and I also am taking medication now to help stimulate me.

I have schedule modifications at work under ADA to work fewer hours than full time requirements. I do not schedule very much activities to allow for my having to pull over, to drive home after work. I allow excess for sleeping. I make people around me aware that if I am invited or have to engage in extra-curricular activities or if something even such as repair on the house needs to be done that they give me a lot of extra time and lead way just to mentally prepare myself and schedule my sleep and energy around those things.

Something that is very frustrating about narcolepsy is the inability to do things that I feel like I want to do and should be able to do; anything from taking my children on a day trip, attending a parent-teacher conference, or cleaning the house. I need to do these things. I really want to do these things, but I’m not physically capable of doing the things that I feel like I need to and it’s a constant frustration, but that’s the way it is. To adjust, I have changed my expectations, not necessarily lowered them, but adjusted change. And so the day trip with the children gets adjusted to a board game and a parent-teacher conference meeting can be done over the phone and the cleaning, I do what I can, and I need to accept that the things that I’m not able to do may not get done.