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Sleepless in spite of MS

By Dan Digmann

It’s Monday evening, and I’m still recovering from a sleepless Saturday night.

When I remember last looking at the fluorescent green numbers on my alarm clock, they silently screamed that it was 4:52 a.m. the following Sunday. I hadn’t slept. All. Night. Long.

There truly is such a thing as multiple sclerosis insomnia. I have intermittently dealt with this symptom throughout my more than 22 years living with the relapsing-remitting form of this chronic progressive disease. But make no mistake: MS had nothing to do with my inability to ease into a recuperative state of slumber.

It was my wife, Jennifer, and my bout of binging the final seven episodes of the Emmy Award-winning Netflix series Ozark that were released last weekend.

Yes, we sacrificed sleep for an intense (and at times disturbing) crime drama we easily could have watched anytime during our normal waking hours. I mean, it would have made perfect sense to stop after the second episode ended around 11:30 p.m.

I paused the next episode and looked at Jennifer. She looked at me. And without saying a word, I pushed play, and we spent the next five hours collectively thumbing our noses at MS (she has secondary-progressive MS) in favor of seeing how the heck Marty and Wendy Byrde were going to come out ahead in their Missouri-based money laundering empire.

The final episode ended at 4:04 a.m. We sat staring at the TV, shocked and dumbfounded by the dramatic twists and turns we witnessed in the series’ climactic conclusion (don’t worry: no spoilers here). We were emotionally exhausted.

“Can you believe we just pulled an all-nighter to watch the whole thing?” I asked Jennifer with a bit of disbelief in my voice.

Pulling a line from one of our favorite 80s movies The Breakfast Club, Jennifer quickly quipped, “Being bad feels pretty good, huh?”

It really did, and here’s why.

I have long-since lost count of the nights this disease has savagely stolen my sleep. Whether it was because of MS insomnia, MS stress or whatever other MS-sparked emotion you can think of, I was up all night. And it wasn’t my fault.

Then, there have been nights when I actually did everything right by going to bed on time, getting the recommended eight hours of uninterrupted sleep, and waking up when the alarm first went off in the mornings, but I still had to push and drag myself through the entire next day because of MS fatigue.

So tell me how empowering it is for me to trudge through today. I still am recovering from a sleepless Saturday night that was followed with what amounted to a three-hour Sunday morning snooze, but you know what? 

My exhaustive state is all on me. 

I intentionally stayed up all night. It was Jennifer and my decision to ignore our illness and graciously take ownership of the reasons we’re feeling so tired.

Rather than regretfully looking back on that period as another wasted night of no sleep because of MS, we will forever embrace it as the epic evening we purposefully didn’t go to bed until nearly 5 a.m. Sunday. And we did it for no other reason than to binge-watch the final episodes of the final season of Ozark just because we could.

Take that, MS.