Chronic Illness and the Writer: A Series (Part 2)

Last week I posted the first post in this series on chronic illness and the writer. Today I want to share with you some tips I’ve found to be helpful. I’m not qualified to say these will work for everyone. I just know they have, on occasion, worked for me. You know your body better than anyone and your illness as well. Let no one tell you what will work best for you. Decide for yourself. 

Tips for the not so good days.

Before I get started with the tips, I want you to know I am the worst at following my own advice. However, I am still learning at 72 what I need in my life to function and be happy. Yes, I have my low moments, maybe even days, but you have to pick up and keep on moving, so to speak.

Today I’m sharing the first five of ten tips for those not so great days. Next week we’ll look at the remaining five.

1. Establish a routine.

A routine for your days gives you something solid to return to after one or more not so good days. I once had a rheumatologist give me the following instructions to cope with fibromyalgia:

You need to establish a set time to wake up each morning, same time every day. The same should be done in the evening, a set time to go to sleep. The bedroom needs to be dark, no light at all. Also no TV or music in the background. Clear your mind. If you can visualize, think of a way to clear the things from your to do list that perhaps didn’t get finished today. Eat a healthy diet, get exercise no matter how bad you hurt, drink lots of water, and get plenty of rest.

I worked hard at his instructions after several days of pure anger at his thinking he could tell me what to do. At the end of several weeks, I began to feel better. And thanks to him, fibromyalgia isn’t a part of my chronic issues today. The only element in this advice I’m unable to commit to currently is getting the exercise.

If need be, write little and often. Don’t set yourself up for writing five or six hours straight and ending up fatigued. Because there are other tasks throughout the day which call us at the ready, we need able to withstand the energy they require too. Our illnesses and pain drain our energy level and we need to protect ourselves from draining our energy source.

Spoon theory for chronic illnesses

One method of protecting against excessive loss of energy and the end result of fatigue is The Spoon Theory. The brainchild of Christine Miserandino, The Spoon Theory exists to provide a simple method of gauging your energy usage task by task. Read Christine’s post here and her explanation will be much better than any I could write for you. I understand and appreciate this theory but have not personally tried it.

2. Be flexible with your goals.

It’s easy to get caught up in the list mode when looking at your goals for the year, a month, a day, a week. It’s also easy to beat yourself up if you miss a goal. That only adds to your discomfort.

Sometimes it’s what we read or hear that pushes to meet our goals on a regular basis. As a writer, I’m sure you’ve heard that “to be a writer, you must write every day.” My thinking here is the author of those words never suffered from a chronic illness and/or pain. Trust me–if he/she had, they wouldn’t have written those words. So, what are you to do?

Let’s say you set a goal to write 1,000 words each day. Some days you may meet that goal. But others you may only write 500. Then on a really good day you write 3,000 words. And on your worst days you write nothing. Do you see how this all may balance out in the end? This is where my next tip comes into play.

3. Be honest with those who need to know.

When I was still a working girl in the private sector of the Portland legal community, I pushed every day to get to work no matter how bad I felt or hurt. I continued to work long, overtime hours in spite of my physical condition. Honesty with others about my chronic conditions left me vulnerable and fearful they might judge me as lazy or goofing off. An incident a few weeks later taught me differently.

The memory of this particular day is still fresh in my mind. It was during my years of coping with fibromyalgia. I knew I really wasn’t able to cope with a full much less an overtime day and three attorneys. Each one of the attorneys expected me at his/her beck and call. The work was flowing across my counter in front of my desk like Niagara Falls.

One of my three attorneys had left me gifts of several tapes to transcribe and I had done a couple of them. I picked up another just as I was interrupted by a ringing phone. I put the tape in my transcription machine and voila, I hit the ERASE button. Didn’t even phase me. It hit the end and I rewound it and didn’t think about it at all until he asked about the finished product. That’s when I realized I had been walking a tightrope with no security net that day. I burst into tears and explained to my senior attorney what was going on. He called my husband to meet us at our home, and he drove me there and told me to take off the rest of the week. Understanding? Oh, yes. Fears warranted? Never. It was all in my head and my upbringing.

Be honest and upfront with those who need to know.

4. Find ways to adapt your workspace to your needs.

Most importantly, make certain your desk, computer, and chair are ergonomic to fit your physical needs. Search online for charts showing the distances necessary to make these three things just right. During the last two-plus years, I’ve spent many hours using my laptop while sitting in my recliner because it was the most comfortable place for my back and other injured areas.

I keep a pain-killing cream nearby (Aspercreme with lidocaine 4%). It really works quickly to erase the low-grade pain. Also, the freezer is stocked with ice packs for deeper and more intense pain. On the days, the pain is at its worst, I simply call it a day and do other things, like pick up a good book and read it all the way through. I listen to music and knit, or I succumb to adult coloring books. With my mother-in-law’s kitchen stool from the farm where my husband grew up, I can pretty well prep and cook meals. Little things are all it takes to make it easy to do what I need to do, or not.

5. Don’t compare yourself to healthy folks.

This is an area where I lose ground easily. Especially during the seasons I love, spring and summer. Right now, I’m envious of those out planting gardens and having the ability to be outside actively working in their yards. What I should be doing is thinking about all the things I can do that they can’t. Comparisons never work in your favor in the instance of healthy vs. unhealthy.

When you’re a writer, it’s doubly easy to succumb to the successes of your fellow authors. For example, when you’re on Twitter or Facebook, someone always has a cover reveal to share, or announces they’re signing with a new agent, or sharing they got a gargantuan publishing deal from one of the big houses! And you’re sitting there wishing you could just write 1,000 words a day. Remember this, if nothing else, we can’t all be Stephen King, J.K. Rowling, or Alice Hoffman. So just be the best you can be.

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Until next time and Part 3,

 

 

 

 

7 thoughts on “Chronic Illness and the Writer: A Series (Part 2)

  1. Thank you for addressing this issue, Sherrey. I too suffer from chronic pain. I do the best I can and try not to worry about what I’m not able to accomplish on certain days. Your words help.

    1. Linda, thanks for taking time to stop by and read my post. I’m learning to think the way you describe. It’s hard. I’ve always been a perfectionist and was taught everything had to be done now. I’m learning the world doesn’t come to an end if I don’t get it all done now! LOL! Come visit again.

  2. First, thank you so much for sharing your very personal challenges here. As a fellow writer who has struggled with chronic pain, it’s helpful just to know we are not alone. Your tips are wonderful. But most of all I think I needed to read the part about not being so hard on myself. My dear hubby routinely tells me I try to do too much and I think I’ll start doing a better job of listening to him. ;0)

    1. Indy Quillen, so nice to have you stop by and read this post. Thanks for adding your thoughts and comments to the topic. Sounds as if your dear hubby and mine speak the same language! Do come back again.

  3. Thank you for this post, Sherrey. Such a peaceful gentle reminder about self-care and writing. At eighty years I need constant reassurance that it’s all right to go slower, rest and be peaceful.

    1. Maureen, nice to have you here. Thanks for your gracious words and thoughts. I empathize with the aging process and am always apologizing for taking so long now that I walk with a cane. And that’s OK–it’s who I am now. Come visit again.

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