Living with Ankylosing Spondylitis and Why We Must Keep Moving

 

Living with Axial Spondyloarthritis

LIVING WITH ANKYLOSING SPONDYLITIS aka AXIAL SPONDYLOARTHRITIS

Life with Ankylosing Spondylitis is a pain in the AS!

Written in 2015 during The Walking Spondies second year of walking for awareness. [Updated 2018 and 2021]

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 Ankylosing Spondylitis kicked into high gear.

[Update] 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.

[Update] It’s April 2021 and I’m achieving 3,000 steps per day for the first time since 2014. Biologics are life-changing and while healing has been slow, I’m so pleased with my progress on my feet. As for pain, nothing really touches that, but it’s a little more under control thanks to my medications.

I live with Ankylosing Spondylitis, Fibromyalgia, and ME/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 healthy people have immune systems that identify foreign invaders and attack to heal infections, 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, and it’s completely overwhelming to live life this way.

It’s important to keep moving when you suffer from Ankylosing Spondylitis. Gentle movement helps to keep our joints working and it helps to prevent stiffness, which is something all AS patients must worry about since AS is a type of arthritis that grows bone and causes spinal fusion.

Carrie Kellenberger, My Several Worlds

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

I’m looking for walkers for The Walking Spondies to raise awareness for Ankylosing Spondylitis during Walk AS One’s annual walking campaign, which is called Walk Your AS Off.

READ:  Living Within The Limitations of Fibromyalgia

How you can help me raise awareness for Ankylosing Spondylitis?

JOIN THE WALKING SPONDIES!

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

1. Support people living with a form of Spondylitis and raise awareness for patients with fibromyalgia and MECFS.

2. Increase awareness and knowledge about Spondylitis and its family of related diseases.

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

Walk Your A.S Off 2015

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

I’m Team Captain of The Walking Spondies, which is a group of family and friends from all over the world that have been walking for awareness since 2014 each year. We have over 70 people on our team that walk together virtually. We walk when we want to and log our steps in Walk Your AS Off’s team page for The Walking Spondies.

This is an 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. (Walk AS One introduced a new system in 2019 that allows walkers to log their steps all year.)

2. You can sign up for 1 week, 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, #TheWalkingSpondies #SpondylitisAwareness, #WalkASOneWorldwide, etc.

3. 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.

READ:  BELIEVE US: Invisible Illness Awareness Week

HOW TO REGISTER: 

  1. Sign up at: https://walkasone.org/signup/
  2. Choose The Walking Spondies as your team
  3. Start logging your steps
  4. Be loud and proud. Post photos of yourself walking or wearing blue on your own page or on The Walking Spondies team page at https://www.facebook.com/TheWalkingSpondies

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.

2 thoughts on “Living with Ankylosing Spondylitis and Why We Must Keep Moving

    Katie Clark

    (May 1, 2021 - 9:12 pm)

    Way to go both in your own walking goal and raising awareness through organizing a team. You are such a strong force in making AS understood and advocating for better living with AS. So proud of you, friend:)

      Carrie Kellenberger

      (May 3, 2021 - 3:26 pm)

      Here I am, supposed to be putting in 3,000 steps per day for the 1st time in 4 years. I’ve been housebound and couldn’t do more than 1,600 to 2,000 if any.

      Anyways, I trained & did it in small increments to avoid the PEM crash, and wouldn’t you know it, I pulled a calf muscle!

      This tells me how de-conditioned I am since I haven’t been doing anything except 5-minute walks on flat surfaces! Such is life with all of this plus MECFS. I’m grateful to be on my feet after being in bed for so long, but one step & I pull a calf muscle? It’s the same muscle I used to injure in track and field all the time. Anyways, thanks Katie! I appreciate the cheers! xoxo

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