The Hobby That Keeps My Ankylosing Spondylitis Pain at Bay
A columnist finds purpose and distraction in focusing on a hobby she loves
It’s the beginning of summer here in Australia, and I’m sitting peacefully at my dining table, basking in the blissful stillness of my normally noisy living room.
Through the open doors, I can hear the heady drone of cicadas as they buzz in time with one another, like a huge heart pulsing lazily. The bright sun beats down outside our shady courtyard, creating a heavy blanket of heat, with just a light breeze rustling the bright-green grapevine leaves in our courtyard.
It feels like time is standing still.
I’m not thinking about my rumbling stomach, and thankfully, I’ve stopped noticing my aching shoulders and lower back. I’m so busy concentrating on my paintbrush (occasionally with my tongue peeping out of the corner of my mouth) that my mind has floated away from all the health issues that have plagued my life recently.
Jemma is deeply engrossed in watercolor painting at the dining table, in 2022. (Photo by Jemma Newman)
My AS flares have increased lately
I like to think of myself as a positive person, but my resilience and happiness have been severely tested in the last six months. For some reason, my immune system has been at an all-time low and I keep picking up every bug that’s floating around the population. Germs must see me and cackle an evil “mwah-ha-ha-haaa!” as they dart my way. The succession of colds, flu, strep throat, and gastroenteritis seems to have been never-ending, and on many occasions, I’ve sunk deep in despair, wondering if I’ll ever get my life on track again.
Every time I get sick with a virus or bacterial infection, my ankylosing spondylitis (AS) symptoms flare up fiercely. I could barely hobble around last weekend when I had gastroenteritis, and the gnawing pain in my sacroiliac joints kept me awake just as much as my churning stomach.
There are plenty of things outside our control that can increase pain and inflammation with AS. Usually, following the no-starch diet helps keep me fairly pain-free, for which I’m very grateful. But I can’t always control stressful life events, sickness, poor sleep, and other factors that can bring on a flare. Even a storm can cause pain, as my friend and fellow AS warrior Janneke Phung wrote in her column “How Changes in Weather Affect My Ankylosing Spondylitis Symptoms.”
Why a hobby helps me better cope with pain
In times of extra pain, at least I can bring some happiness and excitement back into my life with my new hobby, watercolor painting. I can get lost for hours at a time while mindfully mixing beautiful colors, looking up interesting new techniques and tutorials on YouTube, and sketching flowers in our garden.
Immersing myself in something that I find challenging and purposeful lets me escape from the frustration and pain of my ankylosing spondylitis.
Finding the right kind of activity
The key has been to find a hobby that I can enjoy whether I’m able-bodied or not, so that nothing can stop me from participating. Even on those days when I’m barely functioning due to fatigue, I get huge enjoyment from mentally planning my next painting as I lie on the couch. I dream about colors swirling together as I fall asleep at night.
Painting isn’t for everyone, and my husband, Dave, who also has AS, enjoys a few hobbies that help him cope (but would probably drive me bonkers from boredom). When he’s feeling healthy and energetic, you’ll find him scorching up the trails on his mountain bike, and when he needs some downtime, he turns to simulated car racing on his computer. On many occasions, I’ve seen a huge improvement in his mental state from spending a few hours immersed in a hobby he loves.
I’ve realized that a hobby is more than a frivolous activity that’s just for fun. For me, painting has been akin to a life raft in a stormy sea of pain, sickness, and fatigue. Focusing on something creative that brings me great joy is a powerful way to keep my AS pain at bay and feel hope and happiness.
I encourage everyone with a rare or chronic disease to seek an activity that fulfills you and brings a little sparkle to your life.
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, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.
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Comments
Lawrence Gould
Jemma's story reveals an important quality that benefits anyone with AS. It's simple really: take the initiative. Jemma did not sit around waiting for someone's help or feeling sorry for herself. She acted on her own and adopted an activity that would help her. Equally important, she found something that would not be affected by an adverse or difficult set of conditions. She can carry out the activity come hell or high water.
Wise and an approach that any AS sufferer should think about carefully.
Jemma Newman
Lawrence, what a lovely comment! I do think having a chronic disease makes you reassess what you enjoy (and are capable of), and we all need some happiness in our lives. It's not always easy to change and try new things, but it's worth it.
Pat Jensen
Creating things, no matter how big or small, can really improve how we feel.
I worked in an elementary school. We teachers would always savor the times when we would need to color things for for a class display, etc. We would break out the colored pencils or crayons and merrily color away. It was done in the lounge and most always I would notice smiling or humming. It was a little escape and a chance to create something.
Jemma Newman
Oh, I love this description of merrily colouring in the teachers lounge! A little creative activity does wonders, even something simple can be so enjoyable.
Jean Edwards
I found your idea fascinating- didn’t realise that this was actually a technique. Why am I saying this? Because I’ve found exactly the same thing! as you’re describing. When I’ve been suffering from the pain (and sometimes agony) of a gallbladder flareup, often in the wee small hours before dawn when everyone else is fast asleep… I’ve tried going out walking around the neighbourhood - nah doesn’t work… reading nah. What DOES work is going on the computer, problem-solving and creating – designing a website for instance – keeping my mind occupied. Exactly as you describe!! Even being able to simply drop off to sleep as I'm creating in my mind. So I hope others who haven't thought about this, may pick up on your suggestion, Jemma :)