Chronic pain has made it hard to do the thing I love most, but not impossible

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Here are all ‘hacks’ I’ve learned just so I can curl up with a good e-reader.

I’m a reader. I usually read around 50 books a year when left to my own devices, not counting news articles, blog posts, and internet nonsense. I read for any and every reason: to learn about growing vegetables from seed, to disappear into a hilarious version of 1920s Britain, to wrestle with philosophies of existence and meaning.

Last summer, though, I relapsed into chronic illness and I only read two books in the six remaining months of 2017. I have a few different health conditions that result in pain: fibromyalgia, chronic migraine, and myalgic encephalomyelitis (also known as chronic fatigue syndrome), but sometimes major depressive disorder shows up to give it that little extra “oomph.” Going into specific symptoms would make this post unreasonably long, so I’ll sum it up by saying: I hurt everywhere. It’s the worst in the muscles and joints I use the most, like my hands, neck, and shoulders. Light makes my eyes ache and ramps up my migraine. I don’t have a lot of energy and I often have to stop daily life activities when pain becomes unbearable.

This, of course, has a profound effect on my reading. Holding a book or device for an extended period is usually impossible. I fear bright light and have taken to hissing at it like a decidedly unsexy vampire. Even repetitive motion like turning pages can be too painful. Over time, though, I’ve trialed and errored my way into a reading habit that works with my body.

Here are the strategies I’ve employed, the adaptations I’ve created, to enjoy one of the activities most important to me:  

I got friendly with ebooks

Ebooks have several key virtues. First, you don’t have to hold them open. Sometimes when I get inflammation in my hands, I strap some cold packs on while I read. Twenty minutes later, my hands are in even better shape than when I started.

I can also turn the page by tapping the screen instead of pinching and flipping pages, which helps a lot when my hands hurt. Ebooks are also easy to read in the dark with a backlit device. I like to get in bed, lights off, and dial my Kindle’s light to its lowest setting. Photosensitivity is turning me into a cave beast and I kind of dig it.

I switch it up with an audiobook

Audiobooks are next-level when it comes to pain. On days when I’m hurting too much to leave the bed, audiobooks let me read with my eyes closed, change positions every 30 seconds, and break out of those annoying thought loops that have me thinking, “ow ow owww,” for hours on end.

Audiobooks are also the perfect complement to other tasks. Mindless, difficult, or painful stuff like cleaning, grooming, or driving is way easier to do when I have a book playing. It also takes less energy to do both activities at once than it does to do each separately.

I use the library and other free and cheap resources 

Disability often goes hand-in-hand with poverty, or at least being financially strapped, so libraries are an obvious source of free print books. They also offer free audiobooks and ebooks that can be checked out on the Overdrive and Libby apps without even leaving your bed. Other options for ebooks and audiobooks include Project Gutenberg, LibriVox, and Open Culture. Used e-readers cost the same as a couple of hardbacks, and used smartphones cost a bit more; I’ve learned if you can swing it and make it last, this could be incredibly cost-effective and practical.

I do hands-free reading

 

My hands were barely usable for a period of time last summer, so I enabled voice commands through the dictation software on my laptop and turned pages by saying “next.” There are lots of tutorials available for different systems. Bonus points if you set up a voice command for turning on dictation mode; mine was “Hey, Compy.”

(Also check out Gooseneck stands if you don’t want to hold a device for an extended period.)

I control my light source

Getting familiar with the brightness controls on my devices was a game-changer. You mean I can read even if I feel a migraine coming on? Perfect. On most iPhones, for example, you can find this under “settings” and “brightness.” Combining a comfy amount of brightness with a blue light filter reduces eye strain and minimizes photosensitivity.

I made peace with my attention span

Pain and the conditions that cause it can do unexpected things to your brain. I have gone through periods where my attention span was hours long, and others where my attention span was 10-15 minutes. It took me a little while to learn that doing battle with myself over how much I could handle wouldn’t make my attention span longer. What helped me was noticing when my attention strayed, honoring my body’s limitations, and moving on. If you can only listen to a book for 15 minutes, that’s fine. Listening for 15 minutes whenever you can, will add up.

I budgeted my activity, hashed out my priorities, and made some changes

People who live with pain don’t have as much usable time as people who don’t. Something that made me be much more intentional about how I spend my time is making an activity budget. I kept a log of what I did every day, noting how much time it took, energy it used, and pain it caused. After a week or two, I looked it over and asked myself: What can I reduce or cut out completely? What are my top priorities? With a finite and relatively small amount of energy, it isn’t realistic to add something without putting something else aside.

This led to some difficult decisions. In an effort to spend less time cooking and doing dishes, I often drink meal replacement shakes instead of making something more complicated. I don’t love doing that, but my prioritizing shook out that way. Because of that decision, I have 45 minutes a day in which I can do something that is higher on my priority list: usually reading or writing.

Everyone’s priorities and capabilities will look different, and will definitely evolve with time and circumstances. But the act of evaluating what I wanted and needed to do against a realistic view of my abilities has been invaluable.