Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

sleep

Dreamscapes

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I am trying to remember what I dreamt this morning. I used to be able to recall my dreams, but my memory doesn’t work the same anymore. Now I’m often left with only the ghost of emotions stirred in my sleep. All I can remember of this morning is waking and drifting and waking again, trying to shake off the dream and falling back into it, literally trying to shake myself awake. This took nearly an hour, from the time my alarm went off to the time I finally opened my eyes to reassuring sunlight.

The times we live in are not conducive to restful sleep. Although I have been sleeping through most nights, thank goodness, since the pandemic flooded the world, I often wake in a haze of angst. I’ll know the images of my dreams for a few seconds, maybe, then lose them in the light, in the prayers I recite upon waking, in the struggle to recall which day this is. Perhaps I should start writing them down when I wake, a practice I’ve used in the past to decipher myself.

Of course, my angst’s source is no mystery. Corona haunts us all. Deadly racism, the nightmare of too many fellow Americans of color, now demands attention from the rest of us, sleepwalking far too long. Our country is riven by rumors, conspiracies, distrust of difference. Our planet is suffocating. A free and fair election, my one hope for healing our democracy and saving our world, is in danger of disruption by those who place love of power over love of country.

Perhaps I forget my dreams these days because my conscious mind is protecting me. Why rehash in the day what I’ve already processed in the night? But my writer’s insistent curiosity wants to know: What is going on? What metaphor is my brain conjuring? What am I trying to tell myself?

I once heard an interview with the psychologist Frederick “Fritz” Perls, the founder of Gestalt therapy. He described each element of a dream as an aspect of the self. To understand it, he said, you query the element, you act out the elements in the dream. In so doing, the dreamer discovers her own interpetation. The answers can be surprisingly revelatory.

Unraveled, the dream can also become banal, the angst, simply a restatement of the known. Just as a fear that is faced is often defused, so, too, with dreams.

So, what am I trying to tell myself? In her book, The Third Reich of Dreams: The nightmares of a nation, 1933-1939, author Charlotte Beradt wrote of the dreams she collected from fellow Germans as the Nazis consolidated power:

Set against a background of disintegrating values and an environment whose very fabric was becoming warped, these dreams are permeated by a reality whose quality is unreal—a combination of thought and conjecture in which rational details are brought into fantastic juxtapositions and thereby made more, rather than less, coherent; where ambiguities appear in a context that nonetheless remains explicable, and latent as well as unknown and menacing forces are all made a part of everyday life.

One would think I’d be keeping a journal of this extraordinary period of history, when so much is at stake. Writing is intrinsic to my soul. But I haven’t been able to bring myself to do so. I don’t know why. Perhaps recording my dreams is the place to start.

This post was inspired by a collection of “20 Dreams for 2020” by the New York Times (June 12, 2020).

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. Please view Privacy Policy here.

Image: Jr Korpa

Perchance to Dream

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I’ve been having some trouble falling asleep, lately. I go through these bouts from time to time, when I’m trying to do too much and my mind is overstimulated, or when I’ve sat up at my computer too late, or when I watch too much news. Some of the solutions are obvious (plan in evening down time! no computer after 9 o’clock! don’t OD on the latest political crisis!). But I’ve also decided to use regular guided meditation in the morning to help me calm my thoughts.

I subscribe to Headspace, which is a great app with many guided meditation series to help with various issues. When I was dealing with my horrific ulcers the summer before last and the surgical aftermath, the series on pain management was a real boon. This time, I’m meditating my way through the sleep series, which includes both practical advice for good “sleep hygiene” as well as a mind-calming meditation to be done in the morning that helps you sleep better at night.

I was skeptical of how this would work, but lo and behold, after about ten morning sessions, I started to fall asleep more readily. I am less intimidated by the prospect of needing to fall asleep, which is the insomniac’s hamster wheel, and more able to relax. (Of course, now that I’m writing this down, who knows what will happen tonight?)

In any case, the meditation has an added benefit. Monday morning it was cold here, a drop from the mid-60s on Sunday to a wind-chilling mid-30s (welcome to New England). When I started my meditation, however, I didn’t have on any socks, because I’m ready for spring and didn’t feel like it. Of course, that meant my feet were ice cold. I wondered if meditating would improve my circulation. Sure enough, by the end of my ten minutes of visualizing a warm glow filling my body from bottom to top, my toes were actually a little pink. Not toasty, but not freezing, either.

Years ago, I had read how meditation could help Raynaud’s. I once even tried some biofeedback practice to see if it would make a difference, but didn’t have the patience to follow through consistently. Here was yet another reminder that the mind truly does influence the body. And ten minutes of calm in the morning certainly beats that nagging voice in my head urging me to start thinking-planning-doing.

I don’t expect my sleep issues to disappear, but at least it feels more manageable at present. And my toes are happier, too.

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. Please view Privacy Policy here.

Image: Cris Saur

Time to Stop Typing

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I’ve been having trouble sleeping the past few nights. My finger ulcer keeps waking me up. Usually when this happens, I have an infection. But that’s not the case this time. The skin is just too raw on the tip of my right ring finger, but I need to type and do other tasks, and the ulcer keeps getting irritated.

Now, I should be grateful that, at least so far, I don’t need to start antibiotics. I hate taking them. But the good thing about infections, much as they hurt: antibiotics provide significant relief within about 48 hours.

My problem at present is that there’s no quick fix for this particular variant of ulcer pain. It’s like having a headache in my finger. The only cure is time.

Our fingers have an extremely dense concentration of nerve endings. According to a recent article in The Guardian, our fingers have so many nerve endings that our brains actually outsource some neural computations about object orientation and movement to our fingertips.

All of those nerve endings make it possible to distinguish a baby’s cheek from a scruffy beard, stovetop heat from freezer chill, a satin sheet from flannel. When you think about it, the range of our fingers’ neural intelligence is really quite astounding.

That neural density also accounts for why it hurts so damn much when we get a paper cut, or smash our thumbs with a hammer. . .or develop digital ulcers.

The only encouragement I feel right now is that I’ve had two other recalcitrant ulcers in the past few weeks that gave me the same trouble, which are now, thankfully, past the achey stage. I’ve noticed over the years that there is some kind of tipping point in the healing process, when my damaged skin cells seem to wake up and repair themselves in large enough numbers that the pain level recedes. This can happen overnight.

So I’m going to cut this short, give my sore finger a break, take some Ibuprofin and Tylenol (they work differently), redo my bandages, and—I hope—get some sleep. Maybe tonight’s the night my body will work its magic, once again.

Photo Credit: JonathanCohen 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.

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.