A woman is shown in two views: On the left, she looks over her shoulder with an uncertain expression and on the right her eyes are closed.

Finding a New Normal with AS

2020 has been an interesting year, to say the least. The COVID-19 pandemic prompted a global response and altered the day-to-day lives of people across the world. One thing I’ve heard often since the beginning of the pandemic is how badly people want a return to normalcy.

This desire to return to the way things were before is strikingly similar to how I felt after my AS diagnosis. Life with ankylosing spondylitis is different from life before AS--there’s no denying that. But as much as I may have wished for a return to "normal," to a pre-AS state, or to life before chronic illness, that’s just not possible.

Day-to-day life changes, and that’s okay

I remember the days when I had more energy and stamina. I remember when I could hop out of bed without AS’s characteristic morning stiffness leaving my joints rusty like they need grease. I remember when I could stand in the kitchen for an hour to cook dinner without my spine feeling like it’s going to spontaneously combust.

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But those are memories of my body under different circumstances, and that’s okay. It has to be okay, since AS has no cure. Instead of spending my time and energy wishing for days past, I’ve worked hard to accept the new rules of the game.

The goal posts are constantly moving

My body operates with a new set of rules now, and those rules are not set in stone. They’re contingent upon daily pain and inflammation levels, which depend upon how my body decides to react to stress and various external influences.

I’ve become accustomed to this new normal and have made changes accordingly. No one day is like another, and since the goal posts are always moving on me, I make sure to check-in with my body often, paying attention to pain and fatigue throughout the day and making adjustments.

One thing I try to avoid is doing too much. Some days just working, cooking, and doing a few chores around the house is too much for my body to handle. On other days, I can get outside for a hike, do some house cleaning, grocery shop, and cook dinner without inducing a flare or increased pain. Day-to-day life with AS is full of uncertainty.

Living with uncertainty

Embracing a new normal with ankylosing spondylitis means coming to terms with uncertainty. It means understanding that plans are always tentative, whether they’re plans for today or two months from today. It means informing those close to you that sometimes you need to press the pause button, to rest mid-activity, or to take a seat and take some pressure off aching joints.

Since pain, fatigue, and flare-ups can appear with little notice, it also means being prepared. A new normal with AS means keeping tools handy to help manage the sudden increase in symptoms. For me, it also means monitoring long-term trends with my disease so I can discuss any changes with my doctor and make adjustments.

Ankylosing spondylitis has changed me and the way I function, just as the pandemic is altering several aspects of our society and economy. But wishing for a return to the way things were is a futile activity and, quite frankly, a waste of mental energy.

Instead, I focus my energy on understanding this new normal and getting a handle on what this new normal means for me, even as "normal" is constantly shifting beneath my feet.

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