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What It's Really Like To Live With Severe Sleep Apnea

I feel like Hannibal Lecter!

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illustration of woman laying in bed with cpap machine on her nose
Maggie Chiang
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I had put it off for 10 years. I didn't want to wear a mask! I didn't want to be old or sick enough to need one. I swore to my doctor that I would lose weight to avoid getting one ... except I didn't. And I love to take road trips whenever possible — to Connecticut, Cape Cod, Maine. I did not want to bring a CPAP with me! Let alone fly with one! [If you don't use it at least four hours a night, which the machine cleverly registers, it will be taken away.]

In fact, when I had a nightmare sleep study 10 years ago and two men then came to deliver the machine, I told them I would not accept it and sent them packing.

I despise it, but I have a belly [starting to lose a little weight] and severe sleep apnea. My husband was really worried, and said I was gasping for air several times a night. He would get alarmed and tell me to roll over. He is a science/medical writer. He told me I would have a stroke. I got scared.

There are so many reasons to hate this monster. I love blowouts and accessories, for example. Nobody tells you that the strappy headgear will shorten the life of your pricey blowout, which typically lasts a few days for me. Just this morning, a friend stopped by before I had brushed my hair. "Did you get a haircut?" she said. "It just looks cute and curly." Not a look I go for.

The constricting headgear can knock out the pretty Ippolita ice-blue post earrings my husband got me for Christmas, too, when the straps shift or I pull them off and have to put the mask back on. And sometimes, I like going to sleep with my earrings on — just because.

This is timely because of the widely discussed scene in the first new episode of Roseanne, in which Dan has his CPAP machine on. But while he pulls his mask off with swagger and a promise of romance, I don't.

It's so creepy that I hate to even mention it, but I feel like Hannibal Lecter with the mask. (I have never watched that whole 1991 movie, The Silence of the Lambs — even though I love Jodie Foster and a good thriller — because it terrifies me.) And thank God I have the nasal-pillow one, not the nose-and-mouth mask.

I used to love going to sleep, curling up with a book or magazine and sinking into sleep. Not now. One of the worst parts is — after promises upon promises that when you sleep right, you will lose weight — I have, in fact, gained 13 pounds since I did my most recent sleep study, in early September 2017. And I have a Mrs. Santa belly to start. Cruel, cruel world. But as I said, I am starting to drop some weight now … it just was not a magic beauty mask for me. I also wake up with red marks on my face from the headgear. Oh, and even our Bichon Frise, Sugar, no longer feels safe curling up tightly against my pillow, as she did EVERY SINGLE NIGHT. She might start out there, but once the machine ramps up to full speed, she goes over to my husband's side.

How many losses must I abide?

Still, they say it can take a year or more to get used to this animal. I even had to bring it to the hotel we took refuge in for a night when we lost power this year. If we stayed home, not only would we have lived by candlelight, but I would not have been able to plug in and log my four-hour minimum.

According to the pulmonologist, I am sleeping much better ... the amount of times I stop breathing is a tiny fraction of what it was. [They remove a chip from the machine and read my data every office visit.] My husband says so, too.

And I am less exhausted in the daytime, and less likely to go back to sleep after getting the fourth grader to the bus stop.

"How would you feel if you walked out into the parking lot and someone tried to strangle you, over and over again?" the doctor asked me when I went to be fitted for the mask. "Tired, right? It's like you're getting strangled many times at night. Your breathing stops."

I'm not dating anyone, but pity the girlfriend who is. She might want to hide her machine under a jewel-tone velvet throw until she and the partner get serious. And then, if the love is real, she can whip off the throw and be embraced as a Sleeping Beauty. But she will have to avoid sleepovers for a while at first.