Not-So-Friendly Insomnia (Mini-Essay #4)
Ten things about lupus life and trauma recovery
This is part of a series about living with lupus and trauma recovery. I hope those of you with chronic illness or struggling with your mental health might feel less alone as you read these. This is also written for those who want to care, but need an insider’s perspective to help you develop compassion and empathy.
4. Terrible sleep.
Last night I got five and a half hours of sleep. Again. I alternated between writing, reading and praying until I could finally still myself enough to fall asleep. I was hypervigilant, any noise would wake me. The baby woke me too. I had to take pain meds at two or three a.m. I dreamed about one of my kids dying and woke distraught. Then it was morning.
I honestly have no clue when I last slept well. When I was first diagnosed with lupus I was sleeping 18-20 hours a day. I couldn’t do much of anything but sleep and I was barely present when I was awake. “Excessive sleepiness” is actually listed as one of my medical conditions, which seems ironic to me now.
After I was hospitalized the second time, they started pumping me with the steroid, Prednisone—it was the only thing they could use to chill the lupus flare out while I was determined to stay pregnant. (Prednisone is like caffeine on crack.)
Then after Prednisone was reduced, I had a newborn waking me. Besides the baby, insomnia plagues me through PTSD flashbacks/dreams, anxiety, hormonal fluctuations, or just plain pain in my muscles, joints, back or head. It isn’t even as much about the length of time as it is about the lack of the deep sleep phases and REM sleep. I haven’t slept through the night for the last year-and-a-half. It is a rare and very good night if I sleep more than three hours at a time, or wake-up only a few times.
I know insomnia isn’t uncommon and I’ve gone through other seasons of little sleep, but this one feels pervasive. Or maybe it is that I love to sleep and hate my hypocrisy. At night I push against sleep, like I’m a crazed animal getting muzzled. Then in the morning, a survival instinct kicks in and I feel crazy for more, like it is a drug I need.
If I was a Disney princess, I would definitely sing about a longing for restful sleep (but preferably not from being pricked by a cursed spindle or poisoned with an apple).
Read the rest of this series:
Please Don't Simplify the Complexities (Mini-Essay #1)
Pharmacy (Mini-Essay #2)
PTSD Et Al. (Mini-Essay #3)
Not-So-Friendly Insomnia (Mini-Essay #4)
Phantom Pain (Mini-Essay #5)
Hello, Hair! (Mini-Essay #6)
Homebody (Mini-Essay #7)
The Scars (Mini-Essay #8)
Betrayal (Mini-Essay #9)
Grief for a Lost Year (Mini-Essay #10)
Here are other lupus/trauma related posts from the last year-and-a-half:House of Life, Washing Hands, Do Your Job Well, and the Lupus, Pregnancy, and Autoimmune Illness series posted at AverageAdvocate.com.
On Average Advocate this week: How Do You Honor a Story?
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