What I Learned When Sleep, My Longtime Friend, Eluded Me

There are a few things in life I take refuge in, such as faith and family, which offer safety. My ventilator also makes me feel protected by giving me more breath support when I am sick and keeping sleep apnea at bay.

Then there’s the all-important sleep. Sleep has always been a friend, consistently there for me whenever I needed it. Years ago, during high school and college, I would study until 10:30 or 11 p.m. Then I’d call sleep in my mind, and it would come running. By about 5 a.m., I’d have to wave it goodbye as I got ready for school, though I knew I’d see my faithful friend again that night.

I realize that six hours of sleep isn’t enough for everybody. Even I can no longer get up at 5 a.m. every day. It’s all about what the body can handle.

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After my academic years, from my mid-20s all the way to 40, sleep remained a reliable safe haven for me. While I’ve never used it as a way to run away from my problems, it can offer some temporary relief. The fact is, whether you have a rare disease like SMA or not, sometimes life can make you feel like a magnet for big problems, which often bring deep emotions. There has to be some way for the mind to regularly release the pressure of these problems and emotions. Sleep is a good way to do this.

If you are feeling really overwhelmed by constant crises, please talk to someone you trust or get psychological help. I know I sometimes write as if I have it all together, but nobody does. I talk to a counselor virtually, and it helps.

Losing my safe haven

Recently, there was a short period when I couldn’t seem to find my way back to refuge. My trustworthy friend went missing. Unfortunately, it started around Christmas — a day when I usually create fond memories. Not this year.

On Christmas Eve, I got less than three hours of sleep. The next two nights, I didn’t sleep at all.

At that point, I was not only frustrated but also somewhat panicked. Going a few days without sleep can be detrimental to anyone’s health. As someone with a chronic disease, I knew that this kind of exhaustion put me at high risk of getting sick.

I’d been using an over-the-counter sleep aid for a few months, but it no longer seemed to be helping. The night of Dec. 27 arrived, and I still couldn’t fall asleep. By this time, I was so tired that I was in tears. I cried, “Sleep, come back to me!” I couldn’t understand what was going on.

Finding peace amid suffering

So what was causing my sleep deprivation? I can’t say with 100% certainty, but one theory is that it was a side effect of a medication I was on. I’d taken it many times before without any problems, but this time I’d been prescribed a higher dose than normal, which seemed to make me jittery.

After four nights of virtually no sleep, the people around me could see that I was suffering. They started doing really nice things to help me get some rest. A few even bought me some essential oils to put in my diffuser so that the sweet smells could help me relax at night.

A few weeks ago, I wrote a column titled “How Loved Ones Can Help You Overcome Negative Memories.” Acts of kindness can also help to ease your mind if you’re going through a difficult time. Even though I was exhausted, these kind acts warmed my heart.

I didn’t get much sleep on the night of Dec. 28, but the fact is, I did get some, thank God. My sleep returned to normal the following night.

This crisis taught me never to take sleep for granted. Let’s all mentally wrap our arms around our mutual friend, because we can’t have good health without it. Good sleep is a worthy goal that we should always take seriously.

Note: SMA 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.