Elephantine Nose

So about 6 weeks ago I was diagnosed with sleep apnea, which may partly explain my somnolence during the day. I mastered the art of falling asleep in the middle of conversations, driving, phone calls. One friend I hadn’t spoken to in a while had the pleasure of silence on the other end of the line as I conked out like someone who drank way, way too much liquor. My significant other tells me he loves me and that I don’t annoy him most of the time, (nice right? sheesh). What annoys him is when I fall asleep in mid conversation or watching a movie. He’s even so nice as to film me while I gently and ever-so delicately snore. The reason he hates it so much: he gets bored without me awake, alert, and listening. Ladies, men like to talk—and they like to talk a lot. Contrary to all the ideas that they don’t like to share, take it from me having run group therapy for men and my own romantic life as a perpetual listener—they love to talk. And have a lot to say that can be interesting, most of the time. But I digress. So back to the wonderful world of sleep disorders…

So sleep apnea could explain some of the day-time sleepiness. Anemia also had a hand in it (IV iron treatments helped immensely with that). But the biggest culprit is my autoimmune diseases. They are the gift that keeps on giving and giving and giving. I have days where I’m so tired walking feels like I’m lugging stones around and that’s not because I’m overweight, thank you very much. I used to describe the feeling as walking through glue or some other sticky substance that is clinging to my legs. Stairs are my dreaded archenemy. And we have lots of stairs and dogs and thus lots of climbing and walk requirements. Sometimes it’s so bad that rolling my belly out of bed takes more effort than I want. And mind you, yes I’m chubby but I’m not Santa Clause, not yet at least. But if they keep putting me on Prednisone, I may end up shimmying down your chimneys at Christmas.

Lupus, Ankylosing Spondylitis, Sjogrens, and all the other lovely autoimmune diseases poop you out. Just saying the full names of all of them poops one out. Part of this is the chronicity of pain. My pain specialist is the best and he always makes sure to remind patients, pain is a pain in the ass but it won’t kill you even when you feel like it is. Pain is a symptom, so is fatigue. Neither one is fatal or serious until you give up being responsible for the proper treatment of them. Yes I just slipped in a short and fast lecture! But seriously, it’s true. I realized that by not treating my fatigue and letting it go on had consequences that were in fact threatening to my well-being. Relationship issues—who wants to being romantically involved with someone who just falls asleep on you. Transportation issues—who wants to meet my car face-to-face rather than me, I ask? These symptoms aren’t life-threatening. They’re not the symptoms like blood clots, heart inflammation, kidney failure. These are the overt, overwhelming symptoms that can really mess things up around you. Car accident, pain medication addiction, you get my drift.

So where am I in my sleep treatment you might ask? Well for starters, it all required another corticosteroid shot, yes that weight-gaining medication. Fatigue and pain are all symptoms of an active disease—the only way to treat the diseases is to turn off the immune system. That was step one. Step two was getting a CPAP machine. The dreaded machine that makes you feel like to can’t breathe every time you open your mouth and air is suddenly forced up your nose.

This machine has improved my daytime fatigue, but man is it uncomfortable and awkward. It straps around my head, pinching my face into some sort of raisinesque wrinkles, all the while covering my nose with a long tube attached to it going to the whirring machine. I end up looking like a strange elephant. And forget about wearing glasses with it so you can read your Kindle at night for my now sleepless nights. The nose piece is so big on me it goes into the corner of my eyes and that’s a SMALL mask!!

Did you miss it? My little disclosure? Yes friends! I have subsequently developed insomnia. So needless to say, I am awake now—but most of that is when everyone else is asleep.