Writing With Chronic Illnesses

Some days are harder than others, but every day is a chance to work on a blank page. When your own body is attacking itself, sometimes the best way to escape is to jump into a world of your own making, where magic exists and true love can heal.

I’m 35 years old, and living with multiple immune disorders. I have Ulcerative Colitis, Rheumatoid Arthritis, and Hidradenitis Suppurativa. I’m also hearing impaired, and have had a gastric bypass surgery, which comes with its own struggles and problems.

If you’ve never heard of the Spoon Theory, here’s a great article explaining it. It really helps to describe your day to others who don’t think about the energy used for different daily tasks, and just how hard it can be when you have to moderate your ‘spoons’. Some days, getting out of bed and dressed is all the spoons I have for the day.

So how does that work with writing?

Well, it’s hard. I’ve resigned myself to never being the author who can publish a book every three months. Once a year is about what I’m capable of, as I’m publishing work from Liliom Press authors as well, which means editing, formatting, proofreading, etc. I used to get all my writing for the year done in July and November and just didn’t write the rest of the year.

I realized that wasn’t feasible long term, especially as I don’t know how my conditions will change as I get older. I’m working on trying to set up a workable schedule for myself, that I can do even if I’m not feeling well. I’m a bit of a night owl, so I’m up late at night and sleep in late in the morning. A typical day for me consists of-

10am-ish, wake up, weigh myself. Brush teeth, get dressed. Come upstairs to take medicine. Let Molly outside, then sit for a bit to get ready for the day.

10:30am-ish, have something for breakfast, usually something we’ve prepared ahead of time so I don’t have to stand for long periods to cook and can get calories and protein in fast.

11am, work begins. I start with checking emails for all my assorted projects, then social medias. I handle any support related tasks I need to do, update website plugins and themes if necessary. I check in on any event groups I’m a member of to make sure I haven’t missed any important notifications, check in on any events currently running. Generally, social media is the time suck, and if I get lost here, I never make it to most of my other tasks.

1pm, work on Liliom Press tasks. This can be editing, formatting, proofreading, calming down nervous authors, answering half a dozen questions on any topic that’s bothering them at the moment, etc. Depending how long this takes, I may be able to break for a snack/brunch around 3pm, I may not.

3pm, get something to eat, if possible. If not, I’m usually in tasks until dinner, around 5pm.

5pm, eat dinner while my plate is in my lap, still working on things I’m trying to do.

6pm, attempt to write, whether that’s a roleplaying story or my author writing, it just depends on what I’m up on and how I’m feeling by that time, if I’m capable of thinking. If I haven’t gotten out of my earlier tasks, I don’t get time for this at all. Generally by this time I’m exhausted, so I end up falling asleep on the couch for a bit while my stomach settles from dinner.

7/9ish, once I wake up, I’m not really refreshed like normal people are after taking a nap. My stomach likely doesn’t hurt as much anymore, but that’s about it. Everything else still does. At this point, I try to finish anything else I didn’t get finished during the day, if possible, and make a list of things I’d like to get to for the next day.

9ish to 12am- If I’m feeling okay, I’ll watch a movie or show on Netflix or one of our streaming services with mom, or switch to something horror when she goes to bed. I let Molly out a few times, then I either take a hot bath to relax my joints and muscles for bed if I’m capable of it, or I go straight to bed and just take an extra pain pill to counteract the extra pain. Some nights, I’ll force myself to stay up later to get something done, but find myself passed out on the couch at 2am having actually gotten nothing finished. So it’s off to bed.

As you can see… that’s… not really a workable schedule. There are too many spots where I’m overdoing myself, where I’m pushing too hard. Too many places where one flare-up will put me behind for weeks. I’m going to attempt to set aside Monday’s for blog posts. Tuesdays and Wednesday’s for work writing, and then do what I can the rest of the week on everything else. It seems to me like those points where I get lost in are the biggest time sucks, and I need to corral my energy where I can in order to consistently put out at least one book a year like I want to.

When you live with limited spoons, you have to choose what you’re capable of doing each day. You can’t borrow spoons from tomorrow if you don’t know what tomorrow might bring. For me, I’m hoping that focusing on my health and taking care of myself a little better will allow me to write throughout the year, instead of trying to cram everything into two months where I don’t do anything else. Moderation will be my ‘key word’ in 2020. I’m gonna need it. 🙂

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