It’s May 1st. Time to walk for arthritis awareness! The Walking Spondies will be walking throughout May to raise awareness for this disabling form of arthritis.
Walking for Ankylosing Spondylitis has proved to be challenging for me when I’ve got fibromyalgia and MECFS to deal with as well. But May is here, and it’s time for a change!
Living with Ankylosing Spondylitis, now known as Axial Spondyloarthritis, means I must keep moving, yet fibromyalgia and MECFS hate any kind of exercise.
It is a daily battle to get my steps in and I’ve hovered between walking 1,600 steps and 3,000 steps per day since 2017. That is when I moved from mild to moderate fibro and MECFS.
As a moderate patient suffering from both complex illnesses, I have experienced profound levels of disability that have affected every day of my life and all aspects of my life from feeding myself to preparing food, keeping our home clean, managing basic household chores, and venturing out of my home when I had enough energy to do so, let alone keep up with my business – it has been a hard three years!
Once I hit moderate, I became mostly bed-bound and housebound. I made a very hard decision to stay off my feet to rest and allow myself to heal.
This meant withdrawing from everything in my life aside from what was inside the walls of my home.
Tomorrow is May 1st, 2021.
May is my favorite month for advocacy since we’re celebrating World AS Day on May 8 and World Fibromyalgia Day and World MECFS Day on May 12.
I have three events scheduled this month to raise awareness for all three diseases through my team page at The Walking Spondies. The goal with my events is to raise awareness and education for patients who suffer from AS, Fibro, and MECFS, while also assisting large non profits such as the Spondylitis Association of America, Canadian Spondylitis Association, Walk AS One, Support Fibromyalgia Network, Open Medicine Foundation, MEAction Network, and Phoenix Rising. The last three are dedicated mostly to raising awareness for MECFS and long-COVID.
This month, My Several Worlds and its team page, The Walking Spondies, are walking for awareness.
For someone like me who suffers from two forms of Spondylitis – Axial Spondyloarthritis and Psoriatic Arthritis, ‘motion is lotion‘, yet I’ve been housebound for years.
I decided to start training for our May 1st start date at the end of March. At first, I was struggling to keep up with 2,000 steps per day consistently, but I am so happy to say that I didn’t have one single day in April 2021 under 2,000 steps. That’s amazing progress for someone who has been bedridden and housebound for three years.
My step count goal for May is to repeat what I did in April and have at least 20 days at 3,000 steps per day.
In April, I had 22 days at 3,000 steps per day! I’m so happy I was able to do this, but of course, I pushed a bit too hard and ended up hurting my right hip and leg in the last week of April. I’ve been on bedrest since April 27th in order to start walking on May 1st for awareness and in order to meet my May step goal.
I’m feeling pretty confident!
Walking is one of the best forms of exercise you can do when you live with chronic illness. I started out with very short 5- and 10-minute walks in March and gradually increased to 10 minutes several times per day.
I haven’t dared go past that without taking a rest because I’m so de-conditioned, but I see progress and I think I’m going to be in a different place when June arrives.
UPDATE: I nabbed my million step challenge 10 months after starting in December 2021!
OCTOBER 2021 UPDATE
I am pleased to say that I was able to meet my daily step goal of 3,000 steps per day by walking 1,000 steps three times a day for most days in April through mid-July 2021.
In mid-July, I was feeling so confident, I decided to boost my daily step goal to 3,500 and that was my demise. I was able to do this for two weeks and then fell so profoundly ill, I’ve landed back on hard bed rest and I’m back to being a moderate MECFS patient.
It is so incredibly frustrating to see progress and feel confidence and to once again have my body slam me back into being bedbound and housebound. It’s sad. I’m grieving. I know I’m not the only one going through this.
In September 2021 when I finally realized what was going on and how much damage I’d done, I stopped for a few weeks. I’m back to averaging 2,000 steps per day – sometimes less and some days I hit 3,000 steps. Pacing for pain management is such a fine balance for me. To say I am discouraged is an understatement.
But I’m going to try and keep getting some steps in because the day I stop is the day I commit to a wheelchaire forever. Plus walking is good for my mental health.
Like all exercise, before you start anything, you should consult your doctor first to ensure it’s safe for you.
I hope you will consider joining my massive team of walkers with The Walking Spondies. The goal is to enjoy yourself, get some physical activity in, and help us raise awareness for these diseases. If you do join us, make sure you post why you’re walking.
Here is an easy tip to show support for what you are walking for:
Post a photo of yourself or where you are walking and use something like this:
I’m walking to raise awareness for (Ankylosing Spondylitis) (Fibromyalgia) (MECFS) in order to help educate others while supporting a close friend who suffers from AS, Fibro, and MECFS.[Your name}, The Walking Spondies
As for me, I’m walking for Ankylosing Spondylitis, Fibromyalgia, and MECFS in May each year.
I hope YOU, dear readers, will help me in raising awareness. You can also donate to My Several Worlds to help me keep this site going if you wish!
I’d be eternally grateful for your support in any form that you choose to give it.