Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

insomnia

Sleepless in Massachusetts

· · 2 Comments

My grandmother used to say that her mother used to say she was lucky if she slept every other night. Sometimes I wonder if I’ve inherited her genes.

8669222331_3133314c7eOf course, I know there are good sleep habits and bad ones, and lately I’ve been slipping into the bad column—going to bed too late, working on my iMac’s large screen until 10:00 or 11:00 at night so I’m exposing myself to too much light before I should be getting ready for bed (this is actually a huge factor), trying to do too much in the evening so my brain can’t unwind.

Recently I’ve been turning to Turner Classic Movies to relax as I finally get ready for bed, because they’ve been showing a lot of wonderful Oscar-winning films, and there are no blasting commercial interruptions. But then, it’s really hard to stop watching Jack Nicholson in One Flew Over the Cuckoo’s Nest. Or Robert Redford and Dustin Hoffman in All the President’s Men.

So Sunday night, after Chicago ended and I was finishing up bandaging my fingers for the night, I was amused to watch an old black-and-white short film featuring the droll essayist Robert Benchley talking about—what else?—insomnia.

Understand that my sister and I used to take turns when we were young reading Benchley’s essays to each other (and James Thurber, too). Benchley was also born in my home town of Worcester. So I was obliged to watch (at 12:15 a.m.).

The film, How to Sleep, released by MGM in 1935, features Benchley explaining all the ways we do everything but go to sleep—transitioning from a mug of warm milk to a feast of leftovers; getting up for that glass of water to quench our thirst, and another, and another; swatting at mosquitos; and fixing the flapping blinds only to trip on the way back to bed. He failed to mention all the journeys to the bathroom, but then again, it was 1935 and such things weren’t discussed in polite company.

Benchley also demonstrates all the contortions that the sleeper goes through during the night—parodying a study by the Mellon Institute about sleep patterns that was commissioned by the Simmons Mattress Company. This, apparently, was the inspiration for the film, which won an Academy Award and is Benchley’s most famous short feature. Simmons Mattress, however, was not amused.

I shut off the TV and went to bed, feeling lighthearted. But, of course, all it takes is a comedy shtick on insomnia to make me more self-conscious of how I wasn’t falling asleep. I tossed. I turned. I couldn’t shut off my brain. Al was snoring. I shoved him. He stopped and then snored some more.

Finally, around 2:00 a.m., as snow plows once again rumbled down our street, I went downstairs to read. I picked up an art book and was transported to 17th century Spain. A different part of my brain, the visual rather than word-intensive side, took over. By the time I went back to bed, I had finally enabled my busy mind to unclench, and I went to sleep.

Five hours isn’t really enough for a very full day, but I made it. And the one good thing about a bad night’s sleep—odds are much better that I’ll sleep soundly the next. As long as TCM isn’t showing another good flick that will keep me up way past my bedtime.

Photo Credit: DG Jones via Compfight cc

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Hamster Wheel

· · Leave a Comment

Monday morning, 4:18.

Rolling over to adjust my pillow, I hope I can get back to sleep. If I wake anytime between 2:30 and 4:30 a.m., that’s often a futile quest. Tonight is no exception, thanks to a dying battery in our smoke detector that prompts intermittent chirps—undoubtedly the reason I woke in the first place.

With Al’s help, the battery is disconnected and the house, peaceful once again. He falls back to sleep within minutes. But the dark side of my mind is on full alert.

As I lie in bed, I tell myself to stop worrying about a fire, now that the smoke detector is disarmed. This takes a while. I know it’s ridiculous, but it’s the anxiety witching hour.

My mind reviews the past day’s events. I had spent much of Sunday afternoon cooking a dinner that Al and I delivered and shared with friends, a couple we hadn’t seen in a long time. We’d been meaning to visit for months. The husband is a physician, recently returned home after spending many weeks in rehab after a freak accident damaged his spinal chord, leaving him mostly paralyzed from the shoulders, down.

Sharp as ever, he is reflective, soft-spoken, pragmatic. He can maneuver his electric wheelchair with a joystick and use a tablet and computer with adaptive tech tools. He intends to return, eventually, to teaching and practicing medicine. The couple’s courage, humor, strength and resilience are inspiring. We left feeling hopeful.

But as I lie in bed, trying to sleep, all I can think about is, What if?  What if I could no longer take care of myself? What if I could no longer get around on my own? What if that happened to Al? How would we cope?

I try to talk myself off the hamster wheel, but my mind won’t settle. Prayers, meditation, nothing works. I’m just too rattled. I think about how I’ve had the advantage of a slowly progressing chronic disease, which has enabled me to learn gradually how to readjust. Our friends’ lives were undone in an instant. Life is fragile. Change is the only certainty.

Hours later, after I finally get just enough sleep to be able to function, I discover a well-timed blog post in my email about the importance of living each day fully. It’s the obvious answer to the night’s fears.

Terrible things happen to good people who don’t deserve it—accidents, disease, loss, trauma. We can anticipate, maybe prevent, maybe avoid some of the worst; but, ultimately, there is no way to predict the bad stuff. The only way to contend with life’s inevitable risks is to live each day well.

Sunday evening, after our friend’s aide finished feeding him the spinach cheese casserole I’d baked, he turned his head to me and said, “That was wonderful.” Whatever fatigue and hand soreness I’d felt from working in the kitchen evaporated in that instant.

I share this not to brag, but to emphasize the point: The only way to contend with life’s inevitable risks is to live each day well. Sometimes that means just appreciating the fact that you can get up on your own in the morning, even when you haven’t slept soundly. Other times it means cooking a meal for friends who are going through a really rough time, even if your own hands don’t work the way you want them to—or simply savoring the food on your tongue, however you’re able to eat. Ultimately, it means being fully present, in your own life and for others, making the most of each moment, each hour.

I’ll try to remember that, next time I can’t sleep.

Photo Credit: Lewaedd-Q via Compfight cc

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Stream of Consciousness

· · 2 Comments

It’s after 1:00 a.m. and I can’t sleep. One of my ulcers, that stubborn one near the tip of my middle left finger, won’t stop smarting. I try shifting positions, rubbing my hand, warming it under the pillow. Sometimes the pain is caused by a Raynaud’s spasm and eases as soon as my blood flows more freely.

But not tonight. I have to get up and redo the bandage. I don’t want to. It’s chilly in our bedroom, because I’m a fresh air freak and left the window cracked and it’s windy outside. But the ulcer stings and I can’t sleep. So I pull myself out of bed, grab all my hand stuff (bandages, Aquaphor ointment, Sorbsan dressing, cotton swabs, manicure scissors) and go into the bathroom so as not to wake Al (even though an overhead thunderbolt won’t disturb his slumber), turn on the light, cut off my bandage and redo the dressing.

This works, thank goodness. I must not have used enough Aquaphor the first time to salve the sore. Or maybe I didn’t cover the ulcer with a large enough piece of Sorbsan, an ecru-colored, felted material made of processed seaweed that binds with the ointment to create a gel-like cushion of protection. Or maybe it was the cheap CVS fabric bandages I use at night, which have some kind of waterproof coating that can irritate on occasion. I’m using my good, soft Coverlet bandages for this round. Not worth the night-time rationing routine.

So I go back to bed, snuggle under my blankets. And am wide awake.

Maybe it’s because I had to get up, even though my ulcer has finally quieted down. Or maybe it’s because I was writing well into the evening, eight hours of solid composing at the computer, working against a deadline to finish a client’s web content. Too much light from the computer screen before bedtime can affect your ability to sleep, I’ve read.

Maybe all that typing is why my finger was irritated in the first place. Except I don’t use it to type. I’ve become a master at touch-typing with only the fingers that can stand the pressure—and since I use a Mac wireless chiclet keyboard, the pressure is very light.

Maybe it’s because I’ve been immersed in words all day. When I write, I slide into a zone where an hour or two will disappear as the words fly from my mind, through my fingers to the keys onto the screen, and I won’t know what time it is. Even when I’m finished writing, the words whirl in my head, narrating story lines, fantasies, worries, what I have to do tomorrow, what I forgot to do today.

I lie in bed and the words swirl and swirl, until I remind myself that everything I’m thinking about will still be there in the morning when I wake up. I pour all the words into a large square box—this one is sea-foam green—close the lid, lock it and put it on a high shelf in the back of my mind where I know I can access it tomorrow.

Usually this works. Sometimes it doesn’t. Tonight, with God’s grace, it does, and I fall asleep. In the early morning, when my dreams are so sharp that I’m certain they’re real, I’m convinced I’ve been awake all night.

The sun shines through our bedroom shades, then slips behind a cloud. Wind puffs the curtains of the one cracked window. Half an hour after my cell alarm vibrates, I realize that I did sleep, for six hours, after all.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.