Mar. 12, 2018

Sharing the Journey: Sleep

The Sharing the Journey series is by people like you and for you. In their own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day.

This month, we asked Sharing the Journey participants the following question:

March is National Sleep Awareness Month, so we would like to know if lupus has impacted your ability to sleep well, and if so what strategies you utilize to help you sleep better at night?

Some nights it’s very hard to sleep depending on my day. Usually I don’t get that much time to sleep because I am always working full-time, on top of being a full-time student. It’s hard to try to maintain a balanced schedule to finish homework. Because of this, I generally only get five to six hours of sleep each night. When I was first diagnosed with Lupus, I was always stressed out, depressed, angry at everyone and everything, but then I began to listen to classical music and it would always calm me down. Now, before I go to sleep, I listen to classical music or I do meditation. These techniques have helped me immensely. Even when I am not going to sleep I will listen to classical music throughout the day and it makes me relaxed. – Kyra S.

Lupus has definitely impacted my ability to sleep well. Sleeplessness was one of the many symptoms I experienced when I was first diagnosed. To help me sleep better at night, I always try to get in bed early and I do not use my electronic devices once I am in bed.  – LaTrease B.

With my busy college schedule, it's pretty difficult to get enough sleep every single night to appease my lupus. Lupus typically makes me more exhausted, so falling asleep is normally quite easy for me. However, there are days that my stress level is incredibly high and my racing mind keeps me awake; there are other days that my lupus fatigue makes me feel so bad, I can't fall asleep. In both situations, I normally combat these obstacles with the same weapons. First, I establish a nightly bedtime routine that triggers my brain into sleep mode. By reading the same book, listening to the same music or even playing the same game every night, my brain learns to connect this activity with sleep. Eventually engaging in this wind-down routine makes me drowsy. Second, I keep a notepad beside my bed to write down everything that may pester me during the night. Every time I remember something I'm scared I will forget, I put it on that notepad to check the next morning.  Finally, I focus on my breathing. Your breathing patterns have the ability to slow your heart rate and consequently physically and consciously relax you. I often breath in on a count of four, hold for a count of four, release for a count of for, and then rest for a count of four before starting the cycle again. Each round, I increase the count by one aiming to finish by 10. I'm normally asleep by six or seven repetitions. – Becca M.

Lupus can definitely affect your sleep. I found that during a flare, my sleep is greatly affected. Also, the pain always seems to be worse at night. When this does happen, I really try and control the pain before getting into bed. Hot baths or showers, essential oils, and anti-inflammatories seem to help. I also use sleepy time tea before bed or take melatonin. The key for me is to have some sort of pain relief before even crawling into bed, otherwise I know I’m fighting an uphill battle. Also, if the time allows, take naps! – Roxi W.

There are numerous things that I do to help with sleep. I have figured out that my circadian rhythm is an early to bed and early to rise pattern, and this was helped out by a rooster several years ago that started crowing at 4:30 am. At the time, I had been getting up to an alarm at 6am for work. I am several years older now and I am automatically tired around 8:30 to 9pm and up by 5am. This doesn't leave much time for a nightlife, but I am fine with that. I get in a good brisk walk every morning and do weights six days a week, alternating upper and lower body. I eat a Mediterranean diet, so my largest meal is midday and smallest is late afternoon so my body is not digesting a significant amount into the evening. I turn off all electronics at least an hour or two prior to bed and settle into reading. It's not uncommon that my husband and I will watch something that is humorous as laughter helps to relax me in the evening. I give enough time for hygiene and then do some meditation in bed as I drift off to sleep. Other things that I do in the morning as I arise is hydrate and stretch first thing. – Betsy H.

Establishing a regular sleep schedule

A regular sleep schedule doesn’t just give you energy for the day ahead – it can also help reduce inflammation in your body. But falling asleep isn’t always easy, especially when you’re dealing with pain, fatigue, or other symptoms of lupus.

When counting sheep isn’t enough, check out "Sleep well despite lupus" for tips on catching those all-important Z’s.