The Ups and Downs of Sleeplessness

Has the COVID-19 pandemic been keeping all of us up at night? According to an online forum by the Harvard T.H. Chan School of Public Health reported on by The Harvard Gazette, the pandemic has resulted in a big change to people’s sleeping habits, resulting in insomnia for many.

Insomnia keeps you up at night when everyone else is sound asleep. That means you’ll be alone in the still of the night, unless you have a pet to stay up and keep you company. Otherwise, you’re on your own. If insomnia happens often, it can affect quality of life, according to the American Psychiatric Association.

Sleep schedules reversed

My husband, Aubrey, has hereditary ATTR amyloidosis. Before falling ill with the disease, his ability to fall asleep at the drop of a hat used to annoy me. It didn’t matter how strenuous or relaxing his day had been, falling into slumber was never an issue for him. I always needed time to unwind and ease into bedtime.

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Things are vastly different now. I’ll retire for the night and wake up in the morning to find my husband just getting ready to sleep.

This routine is part of the disruption I have dealt with as his wife and caregiver. My day starts in the morning while his starts in the late afternoon. When he first started experiencing difficulty sleeping, I was resentful because many of my daily activities couldn’t include him. Having breakfast together, catching up on events or news to start the day, enjoying a stroll at a morning market — I could no longer do any of these activities with him.

These days, I have learned to accept the reality that sleep happens for him during the day, which is more important for his well-being than my trivial desires. I now understand that even when Aubrey is exhausted, his body prevents him from achieving proper sleep. The neurological pain, the abdominal cramps, and constant diarrhea he experiences all hinder him from coming to bed and falling asleep. This diabolical disease interferes with everyday tasks, making life at times quite unbearable.

So, instead of complaining of life shortchanging us on almost every front, we have learned to accept the inevitable and shift our thinking from “how we want things to happen” to “let’s just be present.”

The 4th century bishop and theologian St. Ambrose said, “It is not enough just to wish well; we must also do well.” In other words, wishing is not wrong, but carrying out deeds that help get us somewhere is even better.

I could always hope to turn back time to the days when Aubrey fell asleep before me, but what good would that do except to make my heart ache even more and miss the good old days? Instead, I embrace his present state and love him for what he is — a sleepyhead who climbs into bed at the crack of dawn.

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Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.