Living with AS and Why We Need to Keep Moving


Life with Ankylosing Spondylitis is a pain in the AS!

If you saw me in December 2014, then you’d know that I had been battling an autoimmune flare since mid-July 2014. Although I received my AS diagnosis in 2009, disease progression didn’t really hit me hard until 2014 when my inflammatory blood markers skyrocketed and my Ankylosing Spondylitis kicked into high gear. It’s now October 2018, and I’m barely moving more than 3,000 steps per day. I never believed that I would become housebound or bed-bound, but that is what has happened and it is my new normal.

For those of you who are wondering what could possibly be wrong with me, I have Ankylosing Spondylitis, Fibromyalgia, and Chronic Fatigue Syndrome – all invisible autoimmune diseases that don’t affect my appearance, but that severely affect my body, mobility, and my mental state of being.

My body is constantly under attack – from itself. Whereas normal people have immune systems that identify foreign invaders and attack to stave off infection, my body is essentially attacking itself and tricking itself into thinking it’s sick, even though it’s not.

It’s exhausting. It’s painful. It’s completely and utterly overwhelming to live life this way.

It’s important to keep moving when you suffer from Ankylosing Spondylitis. I’ve worked my way up to 30 minutes of walking per day, but I haven’t been able to stay on my feet past 30 minutes for more than four years now. That might not seem like a lot to you, but for someone like me, whose inflammation levels and energy levels were so bad for the better part of 2014, this is an amazing accomplishment, and I am always proud of anything I achieve health wise. It seems unbelievable to me that at one point in my life, I could go all day and well into the night.

READ:  Self Realizations from Living Abroad: Chance Encounters

There is nothing harder than dealing with this disease and having it rob you of your well being, mobility and good health and then have to build it all up again when it’s done with you.

I’m gearing up to walk again this year to raise awareness for people suffering from any form of spondylitis and I’m looking for walkers.

Reach on to discover what this walking campaign is all about and how you can help me raise awareness for Ankylosing Spondylitis.

The Walking Spondies have several primary goals with their awareness efforts each year:

1. Support people living with a form of Spondylitis

2. Increase the level of awareness and knowledge by the general public about Spondylitis and the family of diseases.

3. Become more active by focusing on increasing the amount of walking you do.

Walk Your A.S Off 2015

 Hey walkers! Join The Walking Spondies in raising awareness for Ankylosing Spondylitis

Last year, I was Team Captain of The Walking Spondies, which is a group of family and friends from all over the world that chose to walk with me and log their steps to raise awareness for spondylitis.

This is a really easy way to show support and raise awareness for those of us who have autoimmune arthritis, while also reaping the health benefits of walking for yourself!

1. Our official walk is held in May. Training and recruiting begins in April. Any steps that you take in April or May can be recorded and submitted to our final step count with teams around the world.

2. You can sign up for 1 week or 5 weeks or any number of weeks that you think you can manage. This allows everyone more flexibility and less commitment. Remember, the goal is to spread awareness for Ankylosing Spondylitis. We’re not looking for donations, but we are looking for participants who will share their step count at least once and tag their status updates with #AnkylosingSpondylitis.

Speaking from experience, there are millions of us suffering from Ankylosing Spondylitis, but because this disease is so hard to diagnose, it also means that there are lots of medical professionals out there who don’t know what AS is or they don’t know how to treat AS.

READ:  My Flare Survival Kit

4. Starting on April 1st, steps can be submitted at any time year round by a team captain or registered walker.

Please let me know if you’d like to join The Walking Spondies this year.

So what are you waiting for? If you’d like to join in and help me raise awareness for Spondylitis, please use my contact page to get in touch. This is an event that you’ll benefit from too. There is no better way to start or end the day with a nice long walk. 

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Post Author: Carrie Kellenberger

I'm a chronically ill Canadian who has been living in Asia since 2003. I moved from China to Taiwan in 2006. I'm an experienced businesswoman and have worked in many leadership positions in Asia. In addition to my own work, I've been writing professionally about Asia, travel and health advocacy since 2007, providing regular content to publishing companies and travel publications in Asia and North America. I started writing about my health journey in 2009 after being diagnosed with Ankylosing Spondylitis. In 2014, I was diagnosed with Fibromyalgia and ME/CFS, which came with other massive health issues. These diagnoses were the start of my journey as a health advocate and patient leader. Since then, My Several Worlds has been recognized worldwide as a top site for AS, fibromyalgia, and chronic illness by WEGO Health and Healthline.

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