This column’s title may seem strange to some, but it’s not for those of us who’ve faced sleep disorders due to anxiety. For years I wondered if I would wake up in the morning because my breathing was so bad due to cystic fibrosis. Going to bed without knowing if my lungs would hold up through the night was terrifying. But thanks to my double-lung transplant three years ago, for the most part, I no longer have to manage anxiety about sleep.
It dawned on me this week that my anxiety before bedtime has subsided since my transplant. I now fall asleep without the overwhelming concern that I may not wake up. I’m no longer anxious when my head hits the pillow, my thoughts aren’t racing, and I don’t have to pray that I make it through the night. My new lungs are breathing strongly!
I cried when I realized I hadn’t thought about dying in my sleep in a while. It was a humbling moment of thinking, “I hope I never take this for granted, I’m so relieved it’s no longer on my radar, and I have such deep respect for the manner in which I had to live before transplant.”
Prior to my transplant, I would typically sleep on the couch, where I could prop myself up so that I could breathe. It was the most comfortable spot for sleep when I was super sick. I would camp out there because it felt safe. It took me a long time to understand why I typically ended up on the couch, and it makes sense in hindsight.
I didn’t feel safe sleeping in my bed, and I couldn’t fully relax to fall asleep as it didn’t feel like I was elevated enough to breathe. I didn’t trust that I would wake up, so I avoided my bed like the plague.
I never realized how much that affected me until the threat was gone. Because my relationship with sleep was so broken, I’ve had to do a significant amount of work in therapy. Identifying this fear of dying in my sleep, and subsequently wanting to avoid my bed, was crucial. There is power in vocalizing a fear so that I don’t have to carry it around alone.
I also know that our greatest fears live in the dark. Nighttime seems to bring out those darker thoughts that create a pit of anxiety in our bellies. It’s as if our fears come alive at night, and anxiety can easily overtake us.
Don’t get me wrong, the threat was real. Thank God I would wake up and cough and spit up the mucus that choked me during the night. My brain would register that I needed to clear my airways to breathe, and my body would follow suit, even while sleeping. I would often wake up surrounded by Kleenex because I had coughed and spit throughout the night. And I wouldn’t remember any of it happening.
Fear does still creep in sometimes, prompting anxiety to return. Subconsciously, I think I still occasionally try to avoid sleeping. After being hard-wired for 30 years to know that my most vital function was broken, it’s no wonder I am still sometimes scared my breathing will suddenly stop. That’s a hard habit to break.
Changing my relationship with sleep has been an ongoing process. Resetting my bedtime routine has helped significantly. It hasn’t happened overnight (sorry, pun intended), but I’ve definitely made progress sleeping in my bed and feeling rested.
I’m not the only one who has anxiety about sleep. My mom is still traumatized from watching me struggle to breathe for so many years. When she would visit or stay with me in the hospital, I would often wake up to find her standing over me with a pulse oximeter on my finger to check my oxygen saturations.
I am still sometimes jolted awake by a subconscious feeling that she’s standing over me. OK, to be fair, she actually still does this when she visits. (Thanks, Mom!)
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