A lot can be said for living intentionally. This is a buzzy phrase that people either seem to scoff at or tune into. I’m aware of its sometimes empty, woo-woo uses, but I believe that it is important — especially when living with a chronic illness.
Before ankylosing spondylitis (AS) set in, I was living fast, wild, and with abandon. I partied often, did too much too fast, pushed myself too hard, and never slept. Before being diagnosed, it was clear that I’d lost a lot of my energy and grit. After diagnosis, when things got so bad that I couldn’t do much even if I wanted to, life became a lot slower.
I started being more intentional in my actions, doing things according to my needs and energy levels, and choosing activities that brought me joy and restfulness. I started scheduling time off and making peace with FOMO, or the fear of missing out.
At first, all of this was boring and dull. Saying no to plans — and being called a flake by friends who didn’t really get it — got to me. I was disappointed in myself and my body for being unable to keep up.
But in time, I realized that being intentional was actually better. I was experiencing more of what life had to offer. I was having longer, more meaningful chats with friends rather than going out and doing superficial things. I was spending time in my space and curating it to feel healing and magical, rather than being out of the house all the time. I got to read more, write more, and experience what felt like more time.
To me, intentionality means being thoughtful about how I spend my limited time and energy. This can include dedicating an hour to stretching, listening to music, meditating, or creating art. It means choosing when to have plans and spending quality time indoors when I need to. I realize that anyone on the outside might view this as limiting, boring, or sad — but it isn’t.
Having AS has given me perspective, purpose, and an intentional way of living that has brought me closer to myself, my home, my friends, and my hobbies.
When I’m in a flare-up, I do certain things to make “me time” more valuable. If I’m going to be indoors, in pain, not socializing, and generally feeling cranky, I try to be intentional about it.
Here’s what I do:
- If I need to rest, I rest. If I can’t sleep (we all know that AS makes us tired but not necessarily sleepy), I’ll lie in bed and watch some autonomous sensory meridian response videos or listen to nature sounds. During this time, I envision myself recuperating and recharging.
- If I’m in pain, I’ll try to spend the time wisely if it’s outside of working hours. Rather than hunch over my computer or endlessly scroll through social media, I’ll read a good book, write in my journal, or listen to a TED Talk. I try to engage my mind and spirit so that I don’t feel like I’m wasting my time feeling crappy.
- I’ll draw a hot bath, bring in my Google Home, play some music or nature sounds, and let my body relax.
- If I want to go out or do something, or if I want to be mentally stimulated but can’t fathom getting out of the house, I’ll practice a language, take up a new study hobby (Renaissance art, anyone?), or engage in a low-impact project like rearranging a bookshelf.
All of this may sound simple, but when we choose to look at our downtime as an opportunity rather than a drain, a waste, or simply a void, it can make the experience of being chronically ill more fulfilling, rich, and beautiful. Plus, you’ll be smarter than everyone you know!
Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?