Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

sleep

I Just Want to Sleep

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I’m going through one of those phases when I’m not sleeping soundly every night. Too much going on in the world and at home, too many demands on my mental and emotional energy. Usually I can hit the pillow and just drop off, maybe getting up once during the night for a trip to the bathroom, then back to sleep. Not so at the moment, and it’s just so annoying.

I listen to guided meditation and sleepcasts. I’ve recently tried listening to brown noise in my mediation app. According to the Cleveland Clinic, this is low frequency sound, like distant thunder, waterfalls, or heavy rain. The version I have sounds like a low rumbling and is surprisingly soothing. If I’m stressed and my blood pressure is up, this background noise seems to quell my heart rate. I’ve also tried a form of ocean breathing, which is calming.

But sometimes my brain just keeps on whirring. Counting backwards from 100 and starting over when I miss a number works occasionally to nudge me off my train of thought. So does naming all the state capitals (yes, I’m a nerd). Or free-associating with nouns starting with the same letter.

Sunday night, however, I just gave up. I went to bed early because I was really tired and also thrown off by the switch back to standard time. I woke up after only two hours of sleep. It wasn’t even midnight, yet. Aargh! I went through my whole routine and nothing worked. So I caved and took a Benadryl, despite no rash or other allergic reaction. It knocked me out, thank goodness, but it always leaves me groggy in the morning.

So my next quest is to try low-dose Melatonin. I’ve never done this before, but it feels like my aging brain sometimes cannot get my natural melatonin to flow. I’m going to start with a very low dose of 1 milligram and see what happens. I’ve read about using it to help with transatlantic jet lag, but never tried it for that, either. It seems safe enough. So, we shall see.

Sleep is so essential to maintaining good health, especially when the world is going crazy.

And the antidote to all that crazy is to participate in preserving our precious democracy. (How’s that for a segue?!) Today is Election Day here in the USA. there is so much at stake. Be sure to exercise your privilege. If you haven’t already, please get out and vote!

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: Greta Bartolini

Sleep Tight

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Cold weather makes me want to hibernate. Four days from the winter solstice, I start yawning by mid-afternoon as the sun slips past the trees beyond our home.

Fortunately, the cold weather also makes it easier for me to fall asleep and stay asleep most of the night. I may be jinxing myself by writing this. I sure hope not. Sleep is what’s saving me these days.

I’m also having a lot of very strange dreams. These usually surface just before dawn, when I have to make the inevitable trek to the bathroom. But I’ve been able to drop off again, because it just feels so good to get warm under the covers. And the strange dreams typically dissipate soon after I wake for the day. Which is a good thing. Because they are really strange.

In about a month, daylight will feel longer once more. It will get easier to drive home from Boston on the Mass Pike in the afternoon by late February, when the solar glare going west is less severe. I’ve been noticing buds on the trees and shrubs around our home, always an encouraging sign of new life to come.

And, if I’m lucky, I’ll continue to sleep soundly, regardless of the onslaught of bad news that floods our world. It’s essential to my health and well being, to my resilience and ability to cope. All the more so in such stressful times.

I hope, Dear Reader, that you are sleeping well, too. If you’re struggling, here are some helpful tips from the Mayo Clinic.

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: Daniele Levis Pelusi

In Praise of Sleep

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I cannot function without a good night’s sleep. Or, rather, I can function, but I’ll feel awful, like I’m moving through sludge.

Most nights, I sleep uninterrupted and feel refreshed in the morning, although it depends on the more-often-than-I-would-like trips to the bathroom at some point around 4:00 or 5:00—a matter of age, and if I drank too much fluid in the evening.

How I feel in the morning also depends on whether an alarm wakes me in the middle of a dream. If that’s the case, it will take me longer to orient myself and get going (which is a long process, anyway, given hand-care and eye care and stretching exercises and the time it takes to get dressed). It also depends on how weird the dream is. And I have weird dreams.

I wake up most refreshed without an alarm, when daylight filters through the bedroom shades. That’s how we’re supposed to be, I suppose. Given that I’m an owl, not a lark, I often don’t get to sleep before midnight. Daylight around 7:00 arrives at just the right time for a seven-hour night. That’s also when the heat comes up in our home, which at this time of year is essential for me to get myself out of bed.

There’s plenty of research that explains why sleep is so important to each of us—for physical and mental well-being, absorbing and processing new information, retaining memory, paying attention. Especially for those of us living with chronic medical conditions, sleep is essential for healing and staying as healthy as possible.

There’s also plenty of good advice about sleep hygiene, how to create the conditions to help you get a good night’s sleep. For me, most nights, getting to sleep is not a problem, so long as I haven’t eaten too close to bedtime, have turned off the news before I’m ready to turn in (absolute necessity), and have a good book to read until I start yawning so much I can’t read anymore. Getting to sleep is easiest if I’ve exercised during the day, especially walking outside in fresh air.

On those nights when sleep eludes me, or I can’t get back to sleep after an interruption, I’ll start ruminating. Listening to a meditation sleep-cast usually, but not always, does the trick. But even if I can’t go back to sleep,  I try to stay in bed and count backwards from 100 or try to recall all the state capitals, just to rest my joints if not my brain.

And if all else fails, and I’m dragging during the day (more true in cold weather, which makes me want to hibernate), I’ll lie down and take a 20-minute rest or power nap to rejuvinate. This is most likely to happen around 2:30 in the afternoon, the low point in my daytime circadian cycle.

When I do need that break, I am very grateful that I work for myself at home.

And so, Dear Reader, here’s to a good night’s sleep on a regular basis for us all. Be well.

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 Sauer

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