People living with Non-24
Everyone's experience with Non-24 is unique
While the symptoms of Non-24 are generally the same for everyone, the severity of their symptoms and how they affect each person can vary greatly. Sometimes they can be mild, and at other times they can be very frustrating. Hear from people with Non-24 and see if you can relate to any of their experiences.
Non-24 affects everyone differently
In this video, Steve, Ever, and Terri tell you about their experiences living with Non-24. After watching the video, read on for more quotes from people living with Non-24.
"There are nights when I don't sleep, and I have to force myself to get up in the morning. I'm so tired. I feel achy, I can't concentrate, I spend all my energy fighting a battle, and that battle is to stay awake."
"Generally, people cannot understand why I might be tired during the day even after sleeping for what seems like days. They just don't understand my struggle to 'catch up' in order to stay on track with other people and their 24-hour day."
"During lunch time, I try to eat as fast as possible so that I can get some sleep. In the afternoons, I probably get the most deep sleep I have, but it's only one hour plus, so I normally still feel very tired after waking up."
"I've been known to fall asleep and hit my head on my computer. You can't fight it. Even in the middle of a wedding reception, down I went."
"I've had so many occasions where I've fought to stay awake at ten in the morning, or where I'm wide awake in the middle of the night. Nowadays, I'm up when I'm up, and I crash when I crash. I can't expect to keep a regular job, so I do what I can at home."
"Non-24 has given me no end of problems. When I was a kid, not being able to concentrate at school and being punished for not sleeping at boarding school, then being punished again for falling asleep in lessons. Nowadays, I'm not able to really enjoy the things I like doing in the daytime. I feel really down because I can't enjoy my days, and I'm very snappy with friends and other people I go out with. Sometimes I cancel plans if I know that I'm going to feel like that, so as to not lose any friends. Whenever I go on holiday, I always have to have a single room, as shared rooms and Non-24 just don't mix. I've always been the one who's been seen as the trouble maker!"
"Non-24 affects my relationship with my kids because there are times that they want to do things, and it's 'Let mom sit down for a second.' And then it's like my energy, my motor or whatever, is just kind of wound down. And I'm like, 'Oh, I don't want to go.'"
"Sometimes when I've had this lack of sleep but I have to be somewhere out in the world, I get confused in a particularly noisy environment. It's caused some dangerous circumstances at times. Sometimes I get so stressed about it that I just turn around and go home."
"It breaks my heart to sleep through important events or to feel like I've let my loved ones down, even though they always understand and are so supportive."
"I've been married twice, and both of my wives had vision. The difficulties with Non-24 had to do with being able to go to sleep and wake up together. There's a shared kind of camaraderie that my sleep problems kind of inhibited."
"The greatest challenges I face dealing with these sleep-wake issues are with employment. You know, trying to maintain those regular 9 to 5 hours without the need for the nap. At times when I've absolutely had to do that, it's been a problem. In the entertainment industry, work often happens at night, such as being at a theater for a performance. I can manage that by taking a nap. But with other kinds of jobs, when I need to be on a daylight schedule that everybody else keeps, it's much more difficult. Another difficulty with regard to Non-24 is trying to maintain a close, reasonable, balanced relationship with someone who doesn't have it."
"It is much assumed that I will not be able to do certain things because of my blindness. But my blindness often is not what hinders me, it's my lack of alertness because of my lack of sleep from the Non-24."
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Could you have Non-24?
The key symptoms of Non-24 are the inability to sleep or stay asleep at night and a powerful urge to sleep during the day. If this sounds familiar, check the other symptoms.
Because awareness about Non-24 is low, refer to these FAQs to give you some of the answers you need.