How mountaintop experiences help me through the dark valleys of AS

Learning to navigate the highs and lows of life with chronic pain

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by Janneke Phung |

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I hopped off the chairlift, making sure to get out of its way before it swung around the corner and had a chance to knock me over on its way back down. My 8-year-old son, who had learned to ski mere hours earlier, was already waiting for me and coaxing me to join him just a little distance away. I was a bit rusty from not having skied for decades, but it didn’t take long for my body to remember the motions. I joined my son. He grabbed my hand and exclaimed, “See, Mom! I told you the view was incredible up here!”

That was my mountaintop moment.

Literally, I was staring at a gorgeous view overlooking the Columbia Valley in British Columbia, Canada, while holding my son’s hand. This would have been a fantastic and memorable event any day. The moment was even more poignant, however, because it was also a metaphorical mountaintop experience.

A woman takes a selfie with her young son in a snowy valley near a mountain range. Both are wearing helmets and ski jackets, and the woman is wearing sunglasses while the boy is wearing ski goggles. They're hugging each other and have big smiles.

Ecstatically overlooking the Columbia Valley in British Columbia, Canada, with my son. (Photo by Janneke Phung)

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The highs and lows of life with AS

Anyone who lives with chronic pain and disease will tell you their health journey isn’t linear. There are low lows, high highs, and many in-between moments.

It wasn’t that long ago when I couldn’t lift my twin infants out of their cribs. I could go for walks with them only because their heavy double stroller functioned as a walker for me. I truly thought I’d never again live without pain or disability. The same boy who brought me to the top of the mountain on his first day of skiing to show me the beautiful view used to ask me if I was in too much pain to receive one of his hugs.

I’ve had other mountaintop moments on my journey with ankylosing spondylitis (AS). I remember the first time I slept through the night without pain. I opened my eyes in the morning to the sound of my alarm clock, and I didn’t know what had happened to me. Sleeping until my alarm clock woke me had become very unnatural, but it’s now a welcome gift I don’t take for granted.

Another high moment was when I took my three boys on a bike ride by myself. My oldest son, then 5, biked independently while I pulled the twin toddlers in a double bike stroller. It seemed insane that the same person who wasn’t always able to pull her own body out of bed during an AS flare was now hauling toddlers in a trailer behind her bike — even without taking medication!

A recent high moment came during a visit with my rheumatologist. She told me that my AS had stabilized and that she hadn’t seen any disease progression in years. As such, she said that I no longer needed to come in for regular annual appointments, but that I could contact her if and when I experienced a flare. It felt like a graduation moment. (I don’t think I was that excited when I graduated from high school!)

With better management of ankylosing spondylitis, I’ve found that the highs have become more frequent than the lows. Still, the beauty of living with chronic pain is that I no longer take good days and memorable moments for granted. Cherished highs are soaked up and help fuel me on days when the going gets tough.

I wish, in the early days of my chronic pain, I’d known that the hard, painful nights and the exhausting, depressing days were simply lows on my journey, and not my new normal. I suppose that’s the benefit of hindsight.

These days, when I hit a flare, I go into it knowing that it’s simply a valley on my nonlinear health journey. There will be better days to come, and I can relax and breathe through the pain, knowing that mountaintop moments are on the horizon.

Thanks for reading! You can learn more about my story, browse starch-free recipes, or peruse the stories of others who successfully manage their AS with diet and lifestyle modifications on my website. Join me on Instagram and Facebook for the latest updates and recipes.

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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