How we handled an active family holiday while living with AS

Planning and keeping an open schedule were key

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by Jemma Newman |

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As our sedan sped along the highway to our destination in Margaret River, in Western Australia, I realized with delight that this was the first holiday in the last few years that hasn’t made me feel anxious.

Holidays have been rare since my husband, Dave, and I were diagnosed with ankylosing spondylitis (AS). While trying to manage the stiffness and joint pain that accompany this chronic disease, we’ve found it easier to stay in our little bubble at home.

But now, bikes were clipped securely to the roof rack and rain jackets and gumboots were crammed into the trunk alongside an ice cooler full of healthy food. The back seat was a sea of coloring books and soft toys, as the kids happily entertained themselves on the four-hour road trip.

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Why trips were difficult after diagnosis

As wonderful as a holiday can be, they often come with extra physical and mental work. When I was barely managing the symptoms of AS in daily life, the additional burden of setting up a tent, packing and unloading the car, or spending hours cramped behind the steering wheel felt like it would tip me over the edge.

While other families were booking trips to Europe or Thailand, we loved staying close to home, where we could control our level of comfort. It might sound lazy, but after the extreme life upheaval caused by AS, I savored the tiniest taste of ease or simplicity.

What made this holiday great

At this point, five years after my diagnosis in 2018, I feel in much better control of my disease. I’ve learned what didn’t work in the past, and I felt excited to plan a little family holiday of four days in the beautiful lush forests of Margaret River, surrounded by wineries and beaches.

What made this holiday successful was knowing our limits and planning for them. For example, I know that our symptoms are better (and we’re happier parents) with decent sleep and a home-cooked, no-starch diet. So we skipped camping and booked a holiday apartment with all the comforts of home, such as warm beds and a kitchen.

A view looking up from the bottom of stairs cutting up through a mountainous cave or canyon at Mammoth Cave in Margaret River, Perth, Australia.

Climbing out of the depths of Mammoth Cave, Jemma Newman’s family enjoys a holiday full of activities in Margaret River, Australia. (Photo by Jemma Newman)

I planned for the good and the bad

Our AS symptoms can be like an undulating roller coaster — one day we can be feeling fine, and the next day we’ll wake up with a lower back that feels like it’s been cooked over hot coals all night. Knowing that I couldn’t rely on our symptoms behaving, I carefully listed and packed everything we’d need if our AS took a turn for the worse.

Helpful items included a big ice pack, which can be used on the lower back or inflamed joints (and it was used a lot), as well as strong anti-inflammatory medication. I included magnesium oil for muscle stiffness, plus sleeping aids like ear plugs in case of noisy accommodation and valerian, an herbal supplement.

When Dave saw the bulging bag of “just in case” things I’d packed, he doubled over with laughter. But we needed almost all of the items on our holiday, and they improved our ability to get proper rest and overcome some additional joint pain.

We didn’t book activities in advance

Another lesson I learned was not to book activities in advance, because we’d never know if we’d feel physically capable on the scheduled day. Aside from booking accommodation, we made only a loose plan for the holiday. I find it less demanding and more enjoyable this way, because we only do what we are able to enjoy.

Our holiday ended up being packed with plenty of fun, including an exciting walk through Mammoth Cave, with over 500 steps to climb amid dripping stalactites and ancient fossils, and a morning spent exploring a farm while feeding lambs and horses.

Dave spent hours with the mountain biking club, racing through rough forest tracks, pedaling up steep inclines and cruising down rocky descents. After his hip pain suddenly increased during a demanding ride, he declined some additional trail rides to give his body time to recover.

We chose adventures that bring us joy

In the end, we had a pretty physical four days of activities with our kids. At the beginning of our AS journey, I never would have imagined that I could clamber over a rocky hill, climb hundreds of slippery cave steps, or jog across white sandy beaches.

Our holiday wasn’t as relaxing and safe as we’d been at home, but the joy of activities like these, or toasting (more like incinerating) marshmallows over a roaring bonfire, created family memories that we will all cherish for 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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