Aishwarya M, an independent language and literacy educator in India shares her unconventional and imperfect approach to dealing with sleep issues.
But first, touch wood! As with anything else with a chronic illness, my sleep is better at the moment. I do not know how long this phase will last.
Second, I have Fibromyalgia. I have probably had it for over eight years. I got diagnosed in May 2022.
Third, sleep sucks when you have Fibromyalgia1.
Lastly, I might have figured out how to sleep slightly better than before using the following rules. I'm writing this for three reasons. One, the rules I've made for myself are unconventional and not what you'd generally hear on sleep hygiene from medical professionals or websites. Two, I hope it helps someone. And, three, I am going to forget all of this during a future flare, and I don't want to rediscover everything from scratch.
Rule ONE: No Alarms
I've used alarms from as long as I can remember. I realized I was subjecting myself to a jump start (fun fact: I have severe hyper-vigilance) every single morning. I was also waking up in the middle of a sleep cycle and forcing my body to comply. I thought I couldn't go for my morning walks unless I woke up before 5.30. (My morning walks are mandatory for managing both my pain and sanity.) Now, I wake up when I wake up. I go for a walk if I end up waking up before 7 AM. If I wake up later, I try to find time during the day to walk. There are days when I have to skip the walk, and I am learning to not make much of it and just go the next day.
Without alarms, I wake up either because my body needs me to (pain, full bladder, no more sleep left) or noises of the morning (garbage truck at 6.30, an already awake husband going about the house). Jump starts are rarer; I usually manage over seven hours of sleep (I'm only mentioning quantity here; quality may be questionable.); and I wake up in a better state of mind on most days.
Rule TWO: No Mandated Sleep Time
I have tried for years to sleep at the same time and wake up at the same time. Ironically, I have sort of succeeded only after I stopped trying. Rigidity in terms of schedule is the number one enemy of a Fibro body and mind. I have tried over and over again to stick to a schedule so that I could sleep early without taking into account that my body needs to slow down and rest at unpredictable times throughout the day, and that I cannot make every day, every evening routine look the same despite how much I obsess over it. When I couldn't switch off all lights and get into bed by 8.30 PM (i.e., most days), I was so displeased with myself that I couldn't relax enough to go to sleep even though it was still reasonably early in the game. (perhaps, 9.30 or 10 PM).
I now try to allow for flexibility. On most days, I am naturally exhausted by 8.30. I try not to think about undone tasks at work or around the house. I switch off the lights. I also don't force myself to fall asleep. I am learning to tell myself that I'll sleep when I sleep. Some days it's before 8.45. Some days it's as late as 11.30. Since an alarm won't ring at 5.30, I naturally wake up later when I have slept later. And, it's okay.
PS: I work from home. My work usually starts at 9 AM. I always have an alarm for 8.30 AM in case I don't wake up in time. Since I'm going to bed 12 hours earlier, and since my Fibro body almost never over-sleeps, it's usually been fine.
Rule THREE: No Panicking During Midnight Wakings
I used to hate waking up at midnight. Sometimes it was intense pelvic pain, sometimes it was a mosquito, sometimes it was a nightmare, and most times I couldn't figure out the reason. But, as soon as I woke up, I'd see the time, use the bathroom, and worry about how I need to fall asleep or the next day is going to be ruined. Now, here's what I do:
- I don't switch on bright lights in the bathroom to help my body still stay sleepy.
- I try not to check the time. In case I do, it's okay. I don't guilt myself.
- I try not to reach for my phone. In case I do, it's okay. I don't guilt myself.
- I apply rule TWO. I'll sleep when I sleep. I'll wake up when I wake up.
Rule FOUR: No Avoiding Day-Time Naps
I'm done oscillating between 'listen to your body' and 'don't sleep during the day even if you're so sleepy that you can't keep your eyes open.' If I am sleepy or tired during the day, I lie down. If I'm sleepy, I allow myself to sleep. I don't force myself to stay awake. On days when I have work, I do keep an alarm for about 20 minutes before the meeting, for instance, and wake up with a jump start (What can I say.). On weekends and holidays, I allow myself to drift into the sleep without alarms. I wake up when I wake up.
The rules are specific to me and my context. The overarching learning, in sleep and other areas of life has been this: Embrace flexibility. Be imperfect. Listen to your body.
Aishwarya has previously shared her lived experiences with chronic pain here:
How to be prepared for chronic migraine
How to keep guilt and shame at bay
References
1. https://pubmed.ncbi.nlm.nih.gov/25907704/
