Obviously, chronic illness doesn’t affect everyone the same way. That said, I’ve heard from people all over the world with every imaginable chronic illness (which includes chronic pain), and our day-to-day lives are strikingly similar. And so, I thought I’d describe a typical “day in the life,” using my own experience from a few months ago as an example. My hope in writing this piece is for those of us who are chronically ill to feel less alone, and for others to understand us better.
But wait … is it 7 a.m. or is it 7 p.m. the night before? Quite often, I can’t tell the difference because sleep tends to be unrefreshing and non-restorative. Imagine sleeping a good 9-10 hours and waking up as drawn as you felt when you turned out the lights. That can be the case with chronic illness. And with some chronic illnesses, especially chronic pain, sleep may be elusive altogether.
7:00 a.m. to 9:00 a.m.
Lie in bed, fiddling on computer and taking little cat naps.
I’d like to get up, but I feel drawn and I ache all over, so I stay in bed until I have no choice but to get up.
Get dressed to greet my goddaughter Jessica who’s come to town to visit for the morning.
I wonder where I’ll get the energy to hold up my end of the conversation. Then I remember where: adrenaline. The problem is that when I have to use adrenaline to get by, a “crash” is in store a few hours down the line, a crash being an exacerbation of symptoms that leaves me feeling worse than when I started the day and makes it hard to fall asleep when I try to nap in an effort to regain some energy.
While getting ready, work on solving the old pain-pill dilemma.
Which is better? To visit with Jessica in less pain or to put up with the pain so as to avoid the side effects of pain medication—which for me is a muddy brain and nausea. I decide to forego the medication.
She plans to stay until about 12:30 p.m., at which point she has to return to the Bay Area.
Excuse myself from visiting because feel as if I might pass out if don’t lie down.
I don’t know if I actually would pass out; all I know is that the sense that I might pass out is a familiar one. It comes on whenever I’ve exerted myself more than my body can handle. Once in my bedroom, I try to nap but, as I suspected, my symptoms are too intense from the adrenaline crash to be able to drop off to sleep. I lie there in what we call in our household “stun gun state.”
Decide it’s time to work on my “self-talk.”
While I’m lying in bed, I realize that I’m blaming myself for not having had the discipline to cut off visiting earlier. But why should I blame myself when all I wanted was to have a normal visit with someone I care about deeply? My intentions were good. I deserve my compassion, not my blame. As think about this, I stroke my arm and gently repeat: “You did the best you could. It’s hard to be sick.” This makes me feel better.
While eating lunch, realize this is the day I’d planned to get that blood test I’ve been putting off for weeks.
No surprise: I manage to talk myself out of going to the lab yet again. “I’m just too sick today,” I tell myself. “Maybe tomorrow.” This has been going on for three weeks. I know what will happen. Two days before my next doctor’s appointment, I’ll get the darned thing done, even though my doctor specifically wanted me to get the blood test six weeks after he altered the dose of my thyroid medication. It’s already been nine weeks, so I’m three weeks overdue on the test as it is. But, so be it.
Lie on bed and crochet for a while.
Actually, I’m too sick to do anything but, over the years, I’ve learned to do things even though I’m feeling terrible. Of course, there are limits to what I can do, but I can crochet. Sometimes I can even write … I’m writing this piece even though I feel sick and am in pain.
Suddenly remember I promised to see a friend at 4 p.m. for an early dinner my husband would cook for the three of us.
Why did I agree to this when I already had one person coming over today? Ah, yes. I remember. I agreed to see this friend before Jessica said she’d like to visit. I didn’t want to turn her down because she rarely comes to town. I could call my friend and cancel, but I already canceled with him last week because I was feeling too sick. I’m concerned that if I cancel again, it could damage the friendship. I think about staying on the bed until he comes so I’m as rested as possible, but I have some personal and household things that I simply have to take care of.
Cancel tomorrow morning’s tooth cleaning.
This is the fourth time I’ve canceled getting my teeth cleaned, but I know I’ll be too “trashed” from all of today’s activities. I definitely need to stop canceling this appointment, but when pain or sickness levels are too high, the much-needed teeth cleaning is always one of the first obligations to go.
Friend comes over.
I ask my husband to do the bulk of the talking, and he agrees to it. I vow to remain passive and simply listen to the two of them chat so as not to get that adrenaline pumping again. But, as is always the case, this never works. Visiting with people is sufficiently rare for me that enthusiasm takes over … and enthusiasm takes energy. Lacking the energy that a healthy person has, once again, I rely on adrenaline to get me through, but I don’t last long even with my little “helper.” After an hour, I apologize and retire to the bedroom, feeling once again that, if I don’t lie down, I might pass out.
Lie still for an hour.
Not much relief.
Turn on TV to watch something gentle, hoping my symptoms will subside.
They don’t. My body aches all over; my pain levels are high. My head feels so stuffed with cotton that I can’t think straight, so I just lie there with the TV on, barely following what’s on the screen.
Pull laptop over to my reclined body.
Even though I know that getting on the computer when I feel this sick isn’t good for my body, I do it anyway. Why? Because that’s where my support is. It’s where I find other chronically ill people who understand exactly why this day was so hard for me. I hang out online for an hour—way too long—but It makes me feel better emotionally. It’s a trade-off—one I’ve made many times—and rarely regret.
Begin countdown to “lights out” at 9:30 p.m.
Around this time, I start watching the clock, waiting for 9:30 to come, hoping that I’ll be able to get to sleep when I turn the lights out and that sleep will be at least a bit restorative.
8:00 p.m. to 9:30 p.m.
While wait for 9:30 to arrive, begin to engage in stressful “what am I doing with my life?” scenarios.
I always feel the most sick at the end of the day, and this tends to set off an emotionally-charged analysis of my life. If my husband is home, he’s often the one who has to listen to my litany of complaints and worries: “I can’t even visit with people I love without feeling terrible afterward”; “I’m slowly losing all my in-person contacts; soon I’ll lose touch with everyone”; “I’m too sick to get my next book out—I should trash the whole project.”
I’ve been working on keeping these stressful thoughts from spiraling out of control by reminding myself that they always come on at night, which is invariably when I feel the most sick and my pain levels are at their highest. I also tell myself that theses tirades are unfair to my husband. His life has been altered so much by my chronic illness; the least I can do is let him have a relaxing evening without having to minister to me one more time this day.
Lights out at last.
Nine-thirty: nice and early, except … see the very first entry in this piece to see what’s likely to happen.
Although none of our lives are exactly the same (even if we have the same chronic illness), I’ve found more similarities than differences among us. If you’d like to add your experience to “a day in the life,” please do so by leaving a comment to share with others. It helps us know we’re not alone.
Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers, How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow, and How to Live Well with Chronic Pain and Illness: A Mindful Guide. She can be found online at her self-titled site, Toni Bernhard.
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