Many people who are totally blind regularly have to go without a good night’s sleep because of disruptions to their circadian rhythms.
The circadian rhythm is an internal body clock that runs in the background of our brains and makes us feel sleepy and alert at different times throughout a 24-hour period.
This relies on environmental cues such as light and darkness in order to re-set every 24 hours. For people who are totally blind, having no light perception means they can miss out on these cues and develop a condition commonly known as non-24 hour sleep-wake disorder.
People with non-24 hour sleep-wake disorder find it difficult to fall or stay asleep at night and have trouble staying awake during the day.
Susan is totally blind and often finds it difficult to follow a regular sleep wake cycle.
“I might have a couple of weeks where I can get to sleep at 11pm and wake up at 6 or 7am and then suddenly it will snap out of the pattern and I’ll start sleeping at 11pm, waking up at 2am and feeling desperately tired in the mid to late afternoon,” she said.
Like all medical conditions, you should consult a medical professional if you believe you have non-24 hour sleep-wake disorder.
As well as following any prescribed treatment plan, there are some ways people can manage the impacts of non-24 hour sleep-wake disorder.
Flexible work hours
Sticking to a nine to five schedule is often more challenging than usual if you’re unable to sleep during the night and unable to stay awake during the day.
If possible, try to negotiate flexible work hours with your employer so that if you have a bad night’s sleep you can get work done while you’re feeling alert.
Many of us are working from home because of COVID-19 restrictions and this has made it easier for Susan to choose her work hours.
“I can be more flexible with my start and finishing times.
“Not having to spend time traveling to work means I can get an extra couple of hours sleep to make up for the time I’ve been awake during the night.”
Regular exercise can help you feel more energetic and manage the tiredness that results from a disrupted sleep cycle.
“Doing regular exercise during the day has boosted my energy and reduced the desperate tiredness that I get in the afternoon,” Susan said.
Susan explained part of the problem she faces as a result of non-24 hour sleep-wake disorder is falling asleep too early in the evening because of her extreme tiredness later in the day.
“If I can find things to do in the early evening that engage my attention I can sometimes stay awake for longer.
“Talking on the phone is one of the ways that works best for me.
“Sometimes catching up on emails will do it or going out for dinner for a couple of hours if I have the energy.”
Family and friends
Explaining the way that non-24 hour sleep-wake disorder impacts your sleeping patterns and receiving understanding and support from friends and family can help to improve your quality of life.
Susan said it can also be helpful to seek support from people who experience the same disrupted sleep cycle.
“I find it really helpful to talk to people that I know totally get what I’m going through.
“One of my colleagues experiences the same sleep disorder and it’s good to vent my feelings from time to time.
“The thing to remember is you’re not alone.”
You should seek medical advice if you are having trouble sleeping. More information and support may also be available from organisations such as Sleep Disorders Australia.