Whether you are staring at the ceiling or watching the fan spin, the time between getting in bed and actual sleep can be dangerous. For many of us with chronic illness, insomnia is a constant battle. Many diseases create this symptom, and it can be endlessly frustrating, especially when another symptom is extreme fatigue. The irony of this combination is never lost on me. It takes me about an hour to fall asleep most nights, which is much better than the four it used to take before I was diagnosed with Lyme disease. This hour is usually spent reading, watching old TV shows, or staring into the darkness.
People always tell me to stop distracting myself and just close my eyes. They say I will fall asleep faster if I just relax (as if I haven’t tried that). However, when I do this, the four hour mark approaches much more often. My phone my be off and my book closed, but my mind is on, and after a long day of managing symptoms, I am finally alone. I have a moment to process the day. How much pain did I experience? What level of fatigue was I facing? What symptoms were most prominent? How am I feeling now?
This last question is usually upsetting because despite completely resting, I feel the same. The same exhaustion and pain. Even being covered in cozy blankets does not placate my illness, and I panic. I wonder, will I ever get better? Will this pain ever end? Even those without chronic illness feel this panic at night. Whatever trail someone is facing, nighttime is an excellent opportunity for your brain to make you believe there is no light at the end of the tunnel.
If there is one symptom particularly bad during the day, it usually doesn’t get better when I lay down. I have so much more time to focus on it, and I feel trapped. The panic continues as I realize this thought will keep me up for hours, and without adequate sleep, my pain levels will skyrocket tomorrow.
After a long day, everything begins to connect, and I realize how not normal my “normal” has become. I am significantly better than I used to be. I’m coming up on my two year anniversary of treatment/diagnosis tomorrow, but I still have lingering symptoms. While I have learned to manage well, the night seems to bring me back to reality, and the frustration leads to panic.
This is why I distract myself with a book or an old show. Listening to an audiobook or a TV show I’ve already seen stimulates my mind the perfect amount. I am no longer thinking, just enjoying as I drift off to sleep.
Remember, we wake up in the morning and start a new day. That flare you were dealing with eventually ended, even if it took a few days or weeks. You have a 100% success rate of getting through the rough times. The nature of our diseases may be chronic, but they do fluctuate. The feeling will pass, and that can bring us hope.