Hello to The October Slide! Every October my body goes PLOOP. Many Spoonies notice the transition into fall. Summer to fall means nothing but trouble for most chronically ill patients.
This year, I’ve experienced another major setback. October 2024 marks three years since coming out of remission, EIGHT BIOLOGICS – none of which worked, and increasing dependence on the help of others. I got a power wheelchair in April 2024 and I’ve been too sick to use it much outside. Never saw that coming!
The October Slide Happens Just In Time For Invisible Disability Week
As we approach Invisible Disability Awareness Week one again, I’m hyper aware of no longer being part of the ‘invisible’ club. One look at me and you can tell I’m sick and bloated. My joints are massive. I’m suffering from a tremendous amount of disease activity. October spurs it all on. My ‘normal’ baseline since 2016 has been mostly housebound.
I have approximately two hours of usable time during the day. I can do limited activities during that time. This means no stairs, no long walks, no hard household chores, no carrying things, and very little social interaction. All thanks to Axial Spondyloarthritis, fibromyalgia, MECFS, and APS. I wrote about disappearing from life thanks to chronic illness a while ago and it continues to shock me how isolated I am.
Three extremely disabling years
Chronic pain is truly disabling for me. I don’t remember what it feels like to live without pain and inflammation. 2022 was not kind despite me defiantly saying, ‘It’s the Year of the Tiger and it’s my year!‘
(*I hope you read that in a super sarcastic voice in your head, btw.)
Boy, I’ll never say that again! Sometimes it feels like I jinxed myself in making that proclamation.
My AxSpA became active again in 2021 and the onset was insidious as usual. Nothing seems to be working to control my out of control immune system.
For the first part of 2022, I couldn’t bend my knees or arms. I got back on my feet in August. Then I got hit again with another massive ball of inflammation in my back and arms in late 2023 and I received another devastating diagnosis: Antiphospholipid Syndrome. I was sick the whole winter with infection after infection and didn’t start to pull out of it until March 2024.
Meds have worked for a few months and then stopped suddenly. I still can’t believe I spent $70,000 Canadian in three years on medications that didn’t work. After getting coverage, I thought that surely things would get easier. They haven’t.
Here I am again in October 2024 heading for more disaster. I’ve also just learned an entire class of drugs that treat inflammatory arthritis are no longer an option for me because they don’t work for long and they cause a lot of terrible side effects.
OVER-COMMITTING WHEN SICK?
Learning not to overcommit to things when you’re chronically ill is a tough lesson. I like to think I’ve learned it the hard way in the past few years. I’m doing my best not to overcommit to things and just focus on things that make me happy like art and writing.
I always look forward to October because it’s the start of health summit season. But I need to be super careful about how I attend convergences online and be aware that mental exertion often lands me in hot water as much as physical exertion does.
No one warns you when you’re sick that even thinking too hard can make you sick! I’m always trying to be better at spacing out my commitments and not taking on more because I’m excited or bored.
ENABLING OTHERS TO THRIVE AND EDUCATE
As a member of Support Fibromyalgia Network, I enjoy being able to work with other advocates or help patients on their journey with illness. With more than 15 years of chronic life under my belt, I feel it’s important to be vocal about my journey.
Plus having lived abroad in a country where I need to use a second language has provided ways for me to write about things from a different perspective. It’s hard navigating foreign healthcare systems on your own in a second language. Writing about these experiences and providing tips and tricks that help others is something that gives me immense satisfaction.
In 2022, when I wrote this article, I spoke at the first annual Fibromyalgia Community Conference hosted by Support Fibromyalgia Network. During my presentation, they surprised me with an award for my advocacy work. I’m a 2022 Legacy Award Winner! Thank you for acknowledging my mission to support and educate others about life with fibromyalgia! It means the world to me!
I feel very grateful to have this amazing nonprofit in my corner. Melissa understands that patient advocacy is not just an American phenomenon. (And let’s be honest, it often comes across like that to those of us in other areas of the world.)
Melissa cares about highlighting global advocates and global advocacy work. She’s a ‘global citizen friend.’
Global citizenship in health advocacy is a fundamental way of thinking that includes accepting cultural differences.
This term became ‘hot’ in the travel community in 2010 and 2011. However, it doesn’t just apply to travelers and volunteers. We’re seeing it happen more and more in health advocacy even though the term hasn’t caught on yet. But Melissa’s got it!
A global citizen is someone who engages with and has great respect for communities that are different to their own. It requires understanding that there are different ways to do things. In other words, we need to focus on more than just how things are done in your own community.
Obviously you can see what it means from a travel perspective right away. However I think the term gets lost with health advocacy.
The world is becoming smaller every day as we become more connected to one another. It’s much easier now than it was 10 years ago to connect with people in different countries. This allows us to understand issues that we might not necessarily face in our own community.
Global citizenship requires deep understanding, a willingness to learn, respect for, and appreciation for other cultures. It requires an understanding of different ways of doing things. Melissa is constantly reaching out to other advocates around the world and learning from their perspective.
Having been in the travel arena and on the international stage for 20 years, I see it fairly regularly. It’s just starting to become ‘a thing’ in health advocacy. I love that Melissa has her finger on the pulse of all of it. She’s empowering and enabling other advocates by using her platform to share their journeys.
COMMUNICATING ABOUT INVISIBLE ILLNESS AWARENESS WEEK
Finally, it’s Invisible Disability Awareness Week. I’m very active on FB under My Several Worlds and have a daily campaign happening there.
Read my articles about life with invisible disabilities here:
The WHO World Report on Disability estimates that 15 per cent of the world’s population live with disability. That’s more than 1 billion people. In the US, 10% of the population lives with a medical condition that classifies them as having an invisible disability. This includes people who live with chronic pain, chronic fatigue, vision and hearing impairments, mild cognitive problems, and more.
Those of us living with invisible disabilities want others to understand that the world is not accessible to us. It’s hard enough having to navigate obstacles in a world not made for us.
On top of that we must deal with people who don’t believe us. I’m seeing a shift in attitudes as more and more people join in on awareness campaigns.
It’s time to believe and it’s time for change.
REINVENTING & The October Slide
In 2024, I decided to move in a different way by formally moving away from my consulting business. Instead, I decided to commit to opening my Art Studio. I launched my MSW shop in December and started offering Spoonie inspired merch and apparel.
My MSW Shop offers something for everyone. Did you know that there are many ways to support a disabled artist like me? I offer high quality MSW and Spoonie-inspired merch and gifts. Get your T-shirts and other kinds of Spoonie apparel, posters, stickers, pet gear, home decor, and more designed by me!
Posters, cards, stickers, magnets, pins, and other kinds of home decor
Taiwan postcards and calendars
Digital downloads
And more!
If you want to see my art, have a look here at my paper-cutting collages. People really seem to enjoy these and I’m so happy to say that launching these collages paid for my power wheelchair! I was so encouraged by your feedback, I decided to set up a dedicated shop for art, although I’m still doing loads on FB.
So yup, I have my hands full as usual! But the joy that comes from art and writing is irreplaceable. And while I’m sliding into October, at least I have these two things to occupy my time.
I’m a chronically ill and disabled Canadian writer, patient advocate, international businesswoman, artist, and lifelong geek at heart.I lived in Taiwan for 23 years before repatriating to Canada at the end of 2025. My Several Worlds began as a travel and expat blog, but over the years it has grown with me through chronic illness, disability awareness, advocacy, business ownership, systems change, and the messy business of rebuilding a life when your body and the world around you do not always cooperate.I’ve lived several lives in one body. I built a massive international recruiting business called Reach To Teach Recruiting, became a professional writer and patient advocate, and somehow ended up as a chronically ill systems nerd who gets wildly excited about websites, healthcare policy, research rabbit holes, cats, and whatever is blooming in my garden.I’ve also modeled in Canada, China, and Taiwan, including one very memorable Discover Taipei cover involving a pineapple, which I still consider peak expat achievement.I’m a bit of a jack of all trades and a self-professed autodidact. I love art, flower arranging, reading — which is an understatement if you’ve seen my Goodreads profile. I have a special place in my heart for science, technology, law, health and medicine, history, disability policy, and culture.Animal videos make me cry. I hate cooking. You can find me nerding out at home most of the time due to being mostly housebound. If I'm not engaged in one of the activities listed above, I'm probably building websites.Check my About page to learn why I’m taking you on this journey with me through My Several Worlds.
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