Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

sleep

In Praise of Naps

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It’s 2:30 in the afternoon on a dreary, rainy Monday, and my brain is going on strike. I have spent the morning meeting with clients near Boston, which required more than two hours of commuting in a steady downpour, followed by an hour-long phone appointment when I got back home. The conversations were all meaningful, stimulating and productive.

But now I can’t fathom the idea of sitting at my desk for the rest of the afternoon, and I have a lot of work to do. So I set the timer on my iPhone for 20 minutes, lie down on the couch with a cozy blanket, and go to sleep. I wake up a few minutes before the timer sounds, totally refreshed. My mind is completely clear. What a gift.

Years ago, when I was in grad school, I first discovered my mental low point between 2:30 and 3:30 p.m. (unfortunately, back then, I had a class during that hour, and even though I found the content fascinating, I struggled to stay awake). This circadian cycle is offset 12 hours later—if I wake around 2:30 a.m., I can’t get back to sleep until at least 4:00 a.m.

When I was in the early stages of scleroderma, freelancing as a writer, I had to take a nap nearly every afternoon. The disease was exhausting, and there was simply no way to get through the day otherwise. It’s been decades since that phase, and even as I’m often tired mid-afternoon, I usually power through. Often, it helps to walk Ginger. Fresh air works wonders for the mind.

But I realized from my experience Monday afternoon that it pays dividends to listen more closely when my body is trying to tell me to lie down. I’ve resisted naps for a long time, in part because I don’t want to lose precious hours to sleep, and in part, because I don’t want to backtrack to those early years of illness.

Twenty minutes is a perfect interval for a nap. I’m tempted to call it a “power nap,” but that phrase suggests you need to justify napping, so as not to seem lazy. Really, it just felt good—not too short to make me feel even more weary, and not to long to make me feel wasted for the rest of the day. I returned to my desk, ready to get to work, and made it through my entire task list with great efficiency.

I don’t expect to take a nap every afternoon. It all depends on what I’m doing and how I’m feeling. But I certainly won’t think of it as slacking off or backsliding with my scleroderma. I will consider it a worthwhile investment in my health, well-being and ability to do what I need to do. Not bad for 20 minutes.

Image Credit: “Our Sleeping Beauty,” by J.S. Pughe (1870-1909), illus. from Puck, vol. 41, no. 1041 (1897 February 17), cover. Library of Congress Prints and Photographs Division.

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.

Waking Up Is Hard to Do

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It takes me a long time to get going each morning. No matter when my cell alarm vibrates, I press snooze at least three times before I can fully gain consciousness and know for certain that I am here, in my bed, not hugging a newly planted tree to protect it from a group of strangers who want to rip it out of the soil.

A relief to know I’m not stuck in those early morning dreams. But then there’s the matter of getting up. My body is always stiff, my hands often a bit swollen and my mind is sluggish. In winter, as steam heat slowly rises in our radiators, all I want to do is lie there under the blankets and stay warm.

The first step is, literally, always the hardest. I know my joints will feel better once I start moving, so I roll myself up to sit on the side of the bed, let my normally low blood pressure adjust, then push up onto my feet. This entire process, from first alarm to standing upright, takes about a half-hour. I just have to plan it into my schedule.

Some of this morning sluggishness is due to my scleroderma—unless there’s some kind of emergency and my adrenaline blasts me out of bed, I simply cannot accelerate quickly from zero to even 30 mph.

Some of it also has to do with not getting quite enough sleep. I know I should get to bed earlier, but I’m hooked on the Daily Show and Colbert Report to have a good laugh before turning in. If I were wiser, I’d watch the night’s episode online the following evening. But it’s not the same, and, besides, I prefer bandaging my finger ulcers, a 20-minute process, while watching. It’s become my evening ritual.

Even when both shows are in reruns for yet another vacation hiatus, I’ll find a different reason to stay up too late, like finishing the Sunday Times crossword or watching episodes from the first season of Mad Men.

But mostly, my slow morning trajectory just is. When I used to commute every day to Boston, often an hour-and-a-half drive in morning rush hour, it was extraordinarily hard to get up early enough to beat the traffic.

Now, working for myself and being able to set my own schedule, I have more flexibility. It’s a mixed blessing—the feast-or-famine stress cycle of finding clients for my marketing consulting is offset by the freedom of knowing I can get a few more minutes’ rest in the morning if my body just isn’t ready to move. I set appointments for late morning and early afternoon to maximize my attention and alertness, and work after dinner, as needed, to put in a very full day.

Which is why I stay up until midnight to let my brain unwind, and why I have trouble getting up in the morning. Recently I read an essay by William Zinsser, one of my writing heroes, describing how he used to get to his office at the New York Herald Tribune around 10 o’clock each morning. It made me feel better. At least I’m in good company.

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.