By Rachel Doboga

“Leave my door open just a crack (please take me away from here), cause I feel like such an insomniac. Why do I tire of counting sheep when I’m far too tired to fall asleep?” – Owl City, “Fireflies”

Sleep has been a massive problem for me almost my entire life. My sleep problems started around the age of 9, which is when I lost my faith. If you have had a chance to read my blog over the last month or so, you understand the story of my struggles with doubt.

The other main event of that era was the murder of a child named JonBenét Ramsey. She was even younger than me, and it had never occurred to me that a child could be killed. I became obsessed with her murder. When I learned that police thought someone had snuck in her window, I was convinced the same thing would happen to me. I had my parents position my bed so if I heard someone open the window, I could run to them before a killer crept through.

Eventually I realized the likelihood of this happening was zero to none, but then I started worrying. I can’t remember what the worries were about, but they kept me up at night, so my parents sent me to the school counselor. Unfortunately, she wasn’t able to help me. As a high school freshman, I was so desperate for sleep I started taking Tylenol PM on really rough nights.

When I became suicidal at age 16 – and I was still struggling with sleep –  my parents sent me to therapy. The therapist suggested I find a specific chair and gave me a tiny worry doll. She told me to spend a half hour in the chair each day, running my fingers over the worry doll. That way, I could let it out in the chair instead of in bed at night. It was a great idea in theory, but it didn’t work and it didn’t do a thing to stop my suicidal ideation. Oh, the irony. Now I fight every day to stay alive.

When Evan and I were first married, I felt perfect peace, as though God was an umbrella covering and protecting us. I always slept through the night. However, the struggle to sleep returned after about a year and a half when a jazz singer who liked to practice at 1 AM moved in above us. Now we have our own peaceful little house, but we might as well still live in the music hall of an inconsiderate neighbor for all the sleep I get.

I currently sleep only one or two hours at a time with a total of three or four hours of sleep a night, so I am constantly exhausted. My therapist is getting involved now which gives me a lot of hope because he’s brilliant. We’re exploring why I can’t sleep and strategies to help me get back to sleep when I inevitability wake up in the middle of the night again and again. 

I’m definitely feeling the exhaustion physically. I get so tired I ache and even get dizzy but I. Just. Can’t. Sleep. Lunesta, a strong sleep medicine, only kept me asleep an hour, and I tried the maximum dose. Ambien made me have the strangest thoughts and wake up confused. The jury is still out on Trazodone. I can feel myself wearing down, but unfortunately it seems like there may not be a nice quick chemical fix.

I can’t go on like this. This is the worst my sleep problems have ever been. Even right after my diagnosis when I was up grieving the fact that I will never be a mother, that one day I will leave Evan all alone, I got more sleep than this. I talked late every night with my best friend Melissa for a month, making plans to help Evan cope after my loss, but we always crashed around 2 AM. I just wish I knew why this is happening, why my insomnia has gotten so bad. That’s one of the most frustrating parts of ALS – I may never know why my body turned on me.

So I keep chasing Mr. Sandman each night, hoping and praying he will make my eyes heavy and bring me a dream.

* I can’t post comments or reply to them, but I can read them and I love them. Keep writing!

If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a contribution to Rachel’s out of pocket caregiving fees, medical expenses not covered by insurance, and transportation costs through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com