Advocacy Initiatives, A Move, and More!
Ah, where to start?
Today’s post is a personal update. I rarely take the opportunity to do this, but we’ve had a lot happening and there’s no better way to update that by using A Chronic Voice’s monthly blogging prompts to write my journal entry. The prompts for May are pushing, stretching, disciplining, preserving and thanking.
I’m not following my normal format and have decided to work the prompts into my post naturally today.
April was a huge month, but May kicked my AS!
I began prepping for my May advocacy initiatives at the beginning of April, but then we found out we had to move. We packed up 10+ years of our lives in just two weeks and moved to our new castle in the sky in Muzha, Taipei. It is a good thing we have had plenty of practice packing up our lives and moving suddenly. This is our fourth move in Taiwan in the past 15 years, but we plan on being in our new home for at least five years.
We moved just in time too, as our previous neighborhood in Banqiao, New Taipei is now a hot spot for COVID. New Taipei experienced a massive COVID outbreak right after we left. Taiwan is now in level 3 ‘pre-lockdown’. The government is working quickly to get cluster infections under control, but who would’ve thought a bunch of pilots and teahouses would cause New Taipei and Taipei to enter into the worst outbreak we’ve had since SARS in 2003? It just goes to show that even the safest countries who thought they had done everything right cannot outsmart a virus.
Anyways, back to our move: We love our new home! We are so happy to be here and life has changed immensely in such a short time. We have a huge outdoor space; I have an outdoor garden that I’m working on, and we’re spending every minute outside. My husband built a catio for our cats so they can hang outside with us. They love it!
Here’s the DIY video we modeled our catio off of, although ours has been modified for a balcony door. I couldn’t resist adding our catio photos to show you what it looks like.
Moving was an interesting and stressful experience with chronic illness. I couldn’t do any heavy lifting and had to watch my activity output. Despite my best efforts, on the day of our move on April 18th, I had a 10,000 step day and promptly strained my right calf from doing so much. I haven’t been able to do that much since 2017!
I experience A LOT of leg and foot pain with fibromyalgia. It was one of the first symptoms to crop up for me and it is crippling most of the time. I’m constantly working at those sore, tight muscles to try and get them to relax.
It has become clear to me that I’ve become quite de-conditioned from being housebound. I’ve been able to push through these past six weeks because I’ve been smart about planning my daily activity. I had a training plan in place and so far, it has worked aside from a few days that were unavoidable due to our move.
Prepping for May each year takes discipline and a lot of planning ahead as there’s always a lot going on. I had everything planned out for May EXCEPT for our move. Our move resulted in taking away some of the time I’d set aside to create more content for May, but I still hit most of my advocacy goals and events (online and in person) in May.
Walk Your AS Off and The Walking Spondies – A Team Effort for Awareness and Advocacy Initiatives
My main May initiative is the team walk that my team, The Walking Spondies, does every year through Walk AS One. Walk AS One is a 501c3 non profit that I helped found as a founding board director in 2016. Its signature event is called Walk Your AS Off and it’s held every May. Walk Your AS Off is a global awareness event that raises aware for Ankylosing Spondylitis, while also encouraging people to get fit. My team has been walking for awareness since 2014.
This year, I changed my team’s objective to raise awareness for Ankylosing Spondylitis, Fibromyalgia, and MECFS. I joined several worldwide awareness events so the team could ramp up its awareness efforts. We have 70+ members walking worldwide and as always, the team has done an amazing job!
At the beginning of May, The Walking Spondies started walking in earnest for awareness. I had all my team emails created in advance along with spreadsheets and check in emails. I was able to ‘step’ right into our annual awareness picnic in Taipei, which was held on May 8th at Gongguan Water Park in Taipei.
My Personal Step Goal in May
I set my own step count at 3,000 steps per day in May. I started training in late March to try and get my step count up to 3,000 steps per day.
I’m happy to say that my hard work has worked, as I’m now up to 3,000 steps per day for the first time since 2017! My original goal was to try and hit 22 days in May at 3,000 steps per day. It’s now May 25th and I’ve only missed three days at 3,000 steps, so my hard work, planning, and discipline has paid off!
The other thing I’m really proud of is that I’ve been very disciplined with blog posts in 2021. This is post number 15 for 2021. Additionally, I’ve picked up a new job which has required some advance planning since the hours are in EST and PST and I’m in Taiwan! I’ve had five nights this month that I’ve been up working until close to 3am, but I’m making it work. This is the one time chronic primary insomnia has worked out for me!
In short, I’ve had a lot going on and I’ve had to stretch things out to try and get through May. It’s such a long month and I think that has to do with everything that happens: It’s World Arthritis Month with World AS Day falling on the second Saturday of May each year. We celebrated Fibromyalgia Awareness Day and MECFS Day on May 12, and all of May is dedicated to awareness for Fibromyalgia and MECFS.
I’m a bit stretched to my limits now and I’m looking forward to June when I can take my foot off the gas a bit.
As for preserving things, I want to see if I can maintain 3,000 steps on average for the rest of 2021. I’d be so thrilled if I can maintain it. That’s all I’m going to say about that prompt. Fingers crossed!
May Advocacy Initiatives and What I’ve Been Up To
I’m ending this post by thanking everyone who supported The Walking Spondies with our awareness walk for AxSpA, fibromyalgia, and MECFS. I had to take a break from organizing it in 2019 and 2020 due to massive health issues.
It was a wonderful surprise to start things up again this year and find everyone still waiting for me and ready to walk and share why they are walking.
I’d also like to extend a huge thank you to Melissa at Support Fibromylagia Network and Kristal Kent at The Fibromyalgia Pain Chronicles for their incredible support. Kristal produced a fibromyalgia video from advocates based around the world that is very inspiring. I’m so grateful to be a part of it. Here’s the video! Skip to the 7.55 minute mark if you’d like to see yours truly.
Melissa and I have been working together on a number of projects for awareness. I participated in her Fibromyalgia Pajama Party on May 22nd and I wish I could’ve stayed longer because the party was off to a great start. I managed to stay up to 1:30am to listen and was glad I didn’t have to say anything!
I’d like to thank Leeroy Good at Fibro Blogger Directory for organizing a massive fibromyalgia blogger event that has been circulating all month. The post is here if you’d like to read it:
I loved being able to participate in this blogger initiative in addition to A Chronic Voice’s regular monthly meet-ups.
My deep thanks go to the folks at the Spondylitis Association of America for including me in their arthritis awareness initiatives in May. It was an absolute pleasure to attend the Global Spondyloarthritis Summit as their correspondent. I had the best time and also learned so much from the presentations.
Waiting for Our Team Results for May
Finally, we’re entering our last week with Walk Your AS Off and the results are rolling in now. The last week of May, I’m working hard to get our team steps submitted so we can see where we placed amongst other teams around the world. It has been great to get back to walking virtually with my friends around the world
Ta for now! See you next month!