By Toni Bernhard, JD
Here is a list of essentials for those who are chronically ill.
Posted Nov 08, 2015
This piece is based on personal experience and on the thousands of emails I've received from those who live day-to-day with chronic illness (which includes chronic pain).
I know the joy of hearing the actual voice of a loved one. That said, email is the principal way I communicate with people.
It's hard for me to talk on the phone. It saps my energy quickly, partly because of the need for nonstop back-and-forth conversation. Unlike visiting with someone in person, when I'm on the phone, silences feel awkward and sometimes even suggest that something's wrong.
In addition, I can't control what time of day a call will come in. It could be when I'm about to nap, or while I'm still groggy from sleep, or after I don't have an ounce of "juice" left. By contrast, I can send an email any time of day, and I can receive one at three in the morning and do nothing about it until I'm ready to "talk."
Finally, I love the instant (and free) communication with people from all over the world. The other day, a woman in Syria wrote to me about my first book. That was truly special.
I use email for "business" too. For example, when I'm interviewed, more often than not, the person sends me questions via email and I answer them when I'm able. Of course, if it's a podcast or radio show, I have to use the phone or Skype, but that can mean conducing the interview when I'm too sick to be talking.
Recently, I was interviewed over the phone, all the while with a bloody nose-it being one of the side-effects of a medication I'm on. It started bleeding a couple minutes after the recording started so I didn't feel I could say anything. I held one nostril shut during the entire interview, quickly switching to a new tissue when necessary. I thought my voice sounded far too nasal but, afterward, the interviewer said it was fine. I can look back at this now and laugh, but at the time, it was terribly stressful. Good thing I wasn't being videoed! Yes, I love email.
2. Being nice to yourself
It took several years for me to figure out what seems obvious now: it's not my fault that I'm sick and in pain; it happens to everyone at one time or another in life. In my view, becoming your own unshakeable ally is indispensable. Think of it as self-compassion in action.
One way to be your own ally is to forgive yourself when you act unskillfully, such as staying up too late or taking on too many commitments. It's natural to rebel at times and try to do everything that healthy people can do. Instead of getting down on yourself-which only makes you feel worse-learn from your mistake, forgive yourself, and move on.
I think of this as the indispensable of No Blame! I'm not 100 percent successful at being nice to myself, but when I'm able to say, "Okay, I blew it by getting down on myself; no blame-just try again," I know I've struck an indispensable chord.
I include pacing even though I'm not very good at it. I'm determined to improve this skill, so recently I revised my longtime habit of list-making. For years, every morning, I've made a list of everything I intend to do on a that day. Now, I include the time of day that I intend to do each thing, so I can leave large gaps of time in between for resting. It doesn't always work (which is why self-forgiveness is so important), but it is keeping me from cramming too many tasks into a day and that's definitely helping me to become better at pacing.
Let me count the ways my earplugs are indispensable. They mute the sound of the dog barking in the front of the house when I'm trying to rest or nap. They mute the sounds of nighttime: sirens, train whistles, thunder, and student parties. A few years ago, I bought a white noise machine but, to me, the sound wasn't white noise: it was noise! So, it was back to my earplugs.
I've written before about the benefits of practicing mindfulness of sounds. But sometimes, mindfulness of no sounds is what I need, such as when I turn off the lights to go to sleep and there's a student party going on in the neighborhood (I live in a college town). Students like their music and they like it loud. Before I turn out the lights, the music can make me feel as if I've taken up residence in a boom box. With my trusty earplugs, though, the world becomes quiet enough for me to get to sleep.
5. The proper pillow arrangement
I have a multitude of pillow arrangements. I didn't realize how many until I started preparing this piece. So far, I've counted seven:
- One for sleep
- One for rest (yes, it's different than the arrangement for sleep)
- One for reading
- One for listening to audiobooks
- One for watching TV
- One for meditating
- One for lying on the bed, working on my computer
My pillows are of all shapes and sizes. Here's an appreciative shout-out to my husband for his patience in having to part the sea of pillows in order to find a place to sit or lie down on the bed.
6. Not sweating the small stuff
There's enough unavoidable "sweat" in my life simply from taking care of my body. And so, if I drop a glass and it breaks, I've started treating it as small stuff. If I drop one of the expensive china tea cups my mother-in-law gave me when she decided I should have a china tea cup collection: Yup, still small stuff.
"Big stuff" is about other people. It's about being there for them when they need me, even if I'm feeling particularly sick and out of gas for the day. When it's big stuff-whether in-person, on the phone, or online-I step up to the plate and give it my best.
7. Slowing down
This is an acquired skill. I write about it in all of my books and in "4 Tips for Slowing Down to Reduce Stress." I'm surprised at how unaware I can be of how fast I'm moving, even though it's using up my limited energy stores at breakneck speed.
I've also discovered that when I try to do a task in a hurry to save time, it often backfires and winds up taking twice as long because, in my haste, I make mistakes-forget to save a Word Document, spill the milk, break a glass. Even though I know this is not-to-be-sweated-small-stuff, still, if the faster I go, the longer it takes, why not do the task more slowly in the first place?
8. Amazon's Subscribe and Save (or its equivalent)
Because I'm mostly housebound, I do all my shopping online, most of it from Amazon, where I buy everything from bedding to cocoa to dog food to toilet seats (not to mention copies of my own books!). If there's an item I need at regular intervals, by "subscribing," I get a good discount and I know I'll always have it on hand. I get an email from Amazon when it's about to be sent, and can even skip a shipment if I don't need it yet. The online store where I buy supplements has its own version of this, as do many other websites.
Why is this on my list of indispensables? Do I think I'm Popeye? On the contrary, unlike that muscular fellow, I am not good at eating my vegetables. If my husband isn't here to cook for me, I tend to skip them altogether. To make up for this, before he leaves town, I have him buy me a tub of triple washed organic spinach. Then, while I'm putting my dinner together, I open the tub and stuff my mouth with raw spinach several times.
By the time my food is on the plate, I figure I've had my fair share of greens for the day and consider it a job well done. (This technique works with any number of veggies!)
10. Saying "No"
Before I learned to say "no" as in, "No, I can't go out to dinner" or "No, you can't visit for the entire day," my life was one big push and crash cycle. I still need to work on this because, although I've become skilled at saying "no" to others, I'm not always good at saying "no" to myself, as in "No. Stop. You've done enough for now!"
Bio of Author
Toni Bernhard is the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. Her newest book is titled How to Live Well with Chronic Pain and Illness: A Mindful Guide. Before becoming ill, Bernhard was a law professor at the University of California, Davis. Her blog "Turning Straw Into Gold" is hosted by Psychology Today online. Visit her website at www.tonibernhard.com.
Link to Article
This article is printed with permission from Toni Bernhard. The original article can be read at www.psychologytoday.com/blog/turning-straw-gold/201511/10-indispensables-those-chronic-pain-and-illness.