Sharing the Journey: A Good Night’s Sleep

The Sharing the Journey series is by you and for you. In your 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:

Whether it's because of symptoms or other factors, people with lupus can sometimes struggle to get a good night's sleep. What are some things you do to help have a restful night?

Getting a good night sleep is so incredibly important, especially for people dealing with a chronic illness. I find that even if I have had a really bad day, if I can get eight plus hours of sleep I feel so much better the next day. For me personally, I always read before bed instead of watching TV, it makes me much more sleepy. I also try and go to bed earlier and at the same time every night, so my body is on a routine. On my days off of work I always try and get an afternoon nap in, even if it’s just 20 minutes. I used to feel guilty for this, but it really helps me get through the rest of the day and makes me a better person. – Roxi  

Sometimes it’s super hard to get a good night sleep, especially if your symptoms are deciding to pop up as soon as you want some rest. I always take my medications that I am prescribed to help relieve symptoms, but I have also found some products that help me get through the night. I personally love a good microwaveable heating pad. I can get it hot enough to relieve muscle pain and I can still toss and turn in bed without having a cord attached. I also rub lavender oil every night on my wrists then I dab it on my neck, for me it has benefits of relieving pain and helping with sleep. You also won’t find me up past 9:00 PM very often. Some nights I even get in bed at 8:00. My body starts to tell me that if I go much longer, the next day won’t be that good of a day. I have to get off of my feet, unwind, and let the inflammation from the day calm down. It’s all about listening to your body and finding what works best for you! – Beccah  

Sleep has been a struggle for me as long as I can remember. To remedy that, I practice yoga to help me relax and unwind, and I also take vitamins specifically to aid in sleep. - Kayla 

Sleep deprivation caused by multiple lupus manifestations, such as peripheral neuropathy, tinnitus, throbbing joint pain, a pounding migraine, and all over body aches, only heightens their grasp on you and sleep becomes an impossible dream. One sleepless night becomes two. Two sleepless nights become a week. A week becomes a month. After a while, you are barely functioning and time becomes a muddled blur and a night is filled with “sound and fury, signifying nothing.” I take multiple prescription medications. Some of them have side effects that make you sleepy, which I now take before bed. With my prescribed medications, I can achieve a full six hours of sleep – but this is what works for me. – Rob 

I often stay up late because I try to complete homework after work each night for my master program. I would say to help me sleep I sometimes drink hot chai tea or listen to soft instrumental music. It helps me relax. - Kyra

It is very difficult for me to get a great night’s rest. I find myself playing soft music or listening to sounds of nature and the ocean. Meditation videos on YouTube also can help! One thing that is most useful for me is a little noise. I don’t like sleeping without the TV so I deliberately put on something I know I’m not interested in watching that time of night, something without violence (e.g., Hallmark or Nickelodeon). I turn the volume down just enough for me to vaguely hear it and I am able to sleep. Getting a good night’s sleep is truly a work in progress, one I have yet to completely master. Hopefully one day soon we will all have great, peaceful and restful sleep daily. – Angel 

I have several methods I use to ensure I have a good night's sleep. I first try to make sure that I am getting 7-8 hours of sleep a night. With work and life demands that is not always possible, but it's what I aim for. And in fact, I find myself more productive and able to get to bed earlier if I get that amount of sleep because I am not foggy, sluggish, and slow during the day. It's easier to get this much sleep if I try to go to bed and wake up generally around the same time every day, because my body links into a schedule. To wind down for bed, I usually start with a bath - great for if my muscles are acting up due to lupus - and a warm cup of tea. Then I'll watch a little bit of TV or a movie. Usually for the last 30 minutes before I sleep, I play one game on my phone and play the same game every night so it signals my brain that it's time to get sleepy (kind of like Pavlov's dog). I also listen to or watch some ASMR (autonomous sensory meridian response) videos, which is an odd internet trend that I thought was a hoax until I tried it, and yes, it is the best and most relaxing thing ever for me. A quick google search of ASMR will take you to some great and relaxing content. I drift off to sleep using the app Headspace and their sleepcasts. Backed by calming sounds, a different voice lulls you to sleep every night as he or she takes you through a body relaxation exercise and then tells you a calm story while encouraging you to imagine yourself in this peaceful environment. I'm usually out 10 minutes into the hour-long sleepcast. I also sleep with a noise machine in the background which often blocks other sounds made in the house, especially in the morning when other family members wake up before me. I may not be able to do every element of my wind down every night, but this is my go-to recipe for a restful night's sleep! – Becca

Tossing and turning at night? People with lupus are no strangers to sleepless nights. The symptoms that accompany the disease, which vary from person to person, can often deprive adults living with lupus from the seven to nine hours of sleep recommended per day. Quality sleep is essential for your body and mind, and not getting enough can make your days even more challenging. So, if you’re in need of new ways to better your bedtime routine consider listening to melodic sounds to ease your mind, practice a soothing meditation pose, or speak with your doctor about ways to better manage your symptoms that may be impacting your sleep. 

We have a wealth of resources available to help you get a good night’s rest and improve your sleeping habits. We share simple tips to improve your sleep quality, various support resources on fatigue and ways to manage it, as well as mindfulness meditation techniques.