The past weeks have been hard on me. For those who follow me on Twitter, this is nothing new. I’ve talked about my chronic pain before, but I don’t write about it much in my blog posts.
I’ve been diagnosed with Tietze’s Syndrome and I suspect I have Ehler-Danos Syndrome (EDS), type III, the hypermobility kind. The hypermobility is diagnosed, but doctors here won’t make the diagnosis for EDS lightly. Which is good, but it sucks if you have no idea how to treat your body.
This journey started ten years ago when I was still in university trying to get my master’s degree. I had terrible chest pains, and breathing was hard and painful. Six months later, a doctor told me I was hypermobile. My joints overstretch and that can cause some problems. It explained the injuries I had while playing badminton when I was younger. It didn’t explain the chest pains though. Three years, and five other doctors, later, one said Tietze Syndrome might explain the chest pains I still had.
Since then I’ve become more aware of my injuries, subluxations (incomplete dislocations of any joints), fatigue, and chest pains. I quit my full-time job because the stress was too much, and I nearly burned out. My husband allowed me to follow my passion and turn it into a career. My bodily issues have become manageable (mostly due to trial and error in what to do), but it’s still a daily struggle. I haven’t had a painfree day in a year.
Sleeping is dangerous. I’m not aware of my body and I twist and turn a lot in my sleep. I think the majority of my injuries are caused in my sleep. My hip was my most recent aggravation. It tried to dislocate, and the next morning I could barely walk. This was after both my wrists kept popping (either an incomplete or complete dislocation and going back in), and my collar bone shifted three times in a subluxation. I feel like I’ve been hit by car.
But I can’t sit on my butt all day doing nothing. I set a hard deadline for myself to finish my next book in September. I have to write.
Things To Keep You Writing
Instead of focusing on all the bad, I want to talk about how I manage my writing despite the pain.
Cut up your tasks
Lucky for me, and nearly every other writer, the writing process consists of many things. Vomiting the first draft onto a page is just one part, and usually not the one you start with. You need a summary for your story, character sheets, a setting, or maybe you already have an idea for the ending. Research and creating an outline are all tasks you can do beforehand, and even during.
When you have a bad day halfway through writing your first draft, you can already start with light editing of the first chapters if that’s easier.
As a self-published author, I have to take care of the publishing side and the writing. Creating a blurb, ads, or find a good cover artist/designer, are all things I can do on bad days. They require less energy than putting words down.
If you’re going for traditional publishing, you can research agents or publishers, find out when the next pitch war is, or see if there are any writing conferences near you.
Find the right tools
One thing a writer must do, is write. So it’s important to find the right tools to allow you to write, even on bad days. Most of my pain is physical and includes my hands. The sensible thing to do is to invest in dictation software so I don’t have to use my hands. I’m not sensible though and prefer to use my hands to craft my stories. My verbal skills aren’t nearly as good as I want them to be (part of it also due to an old injury).
Writing by hand is one of my things, and fountain pens allowed me to continue writing by hand. There’s less strain since I don’t have to push the pen into the paper to get the ink out, like with a ballpoint. Fountains pens are also a way of expressing myself. My pens are colourful, and I often use vibrant inks when I’m writing for longer periods. Seeing and working with those give me energy to keep going.
Having a good keyboard or snazzy recorder might help as well. The RGB-lit keyboards are nice, or maybe the typewriter keyboard. It’s worth investing in the right tools (hardware and software) to make writing easier and more fun.
Listen to your body…
… but don’t let it dictate your life.
This one is hard for people with chronic pain, and one I still struggle with. My body is telling me to stop doing anything. Washing my hands is enough to pull a muscle. I can trip on even grounds. Getting up, showering, and dressing myself takes up a lot of energy on bad days. It’s frustrating.
Exercising self-care has to be on your radar when you’re dealing with chronic pain. Learning how to make yourself feel better is the easiest way to increase your quality of life. Take a bath, have a massage, eat that thing you love. Take a day off if you have to.
But know that the process of writing isn’t only measured by the words in your document. Reading a book or watching a movie can help you untangle that nasty plothole. Your mind is a powerful tool, and it keeps working, even if you’re not aware of it. Daydreaming while taking a bath is still one of my favourite ways to work on my stories.
Replenishing your creative well
I’m still young (31 is young and I won’t let you tell me otherwise) and there’s so much to do. Pain and the fear of pain are a huge factor in deciding what I’m going to do, regardless of what I want to do. I don’t want to be in pain, but sometimes it’s worth it.
Learn where your boundaries are, and what can help you make the experience more enjoyable (mobility aids, painkillers, presence of a certain person). I have tickets for a concert later this year. We have seats and I’m taking painkillers before we go. That should be enough to help me through the evening without much pain. But I have to wear flat shoes and comfy clothes. I fainted a few years ago when I wore heels and a dress not made for comfort. Just taking painkillers and having a seat wasn’t enough.
By doing the things I love I have the energy to keep going. Going out inspires me and story ideas keep popping up.
I hope I’ve given you a few things to consider on bad days. If you still have any questions regarding my chronic pain and/or writing process, don’t hesitate to contact me. I’m always willing to listen and advice the best I can.