Fibromyalgia Awareness Day on May 12
Today, May 12, is Fibromyalgia Awareness Day. Advocacy and awareness campaigns have begun with Fibromyalgia advocates around the world posting for awareness. Social media campaigns are lighting up with our color of awareness – purple.
I’m so pleased to announce that My Several Worlds has been listed along with several other bloggers as a Best Fibromyalgia Blog of 2020 by Healthline. This is the third year in a row I’ve been honored with this award.
Fibromyalgia is a beast of a disease to deal with. It hits everything!
With fibromyalgia, I’ve found that the pain never stops. I don’t remember a day without pain now. Is it weird to say that I’ve gotten used to this? I’ve just accepted that this is what my life is like. I don’t think it’s going to change.
I’ve written plenty about fibromyalgia before so if you’d like to take a look at previous articles that I’ve written about fibromyalgia, here are some of my most viewed pages and posts:
- Guide To Fibromyalgia
- What is a Flare?
- My Flare Survival Kit
- My Top Tips for Life with Fibro
- Fibromyalgia in Taiwan – What You Need To Know If You Live in Taiwan
- Living within the Limitations of Fibromyalgia
- Learning to Love Your Chronically Ill Body
The best thing to come out of this is that I have learned to smile through the pain. Most people don’t know I’m sick or that I’ve struggled to stay on my feet for over a decade. I’m a great pretender.
Fibromyalgia has also made me stronger, wiser, and more aware of the silent issues that others are going through.
Speaking of others, I’d also like to recognize some fibromyalgia bloggers that deserve recognition. Some of these bloggers have also been recognized by Healthline in recent years.
Here are some of my favorite fibromyalgia advocates:
- February Stars
- Fibro Files
- Through TheFibro Fog
- Melissa at Support Fibromyalgia Network
- Melissa vs. Fibromyalgia
- Brainless Blogger
- The Disabled Diva
- Being Fibro Mom
- Fibro Pain Chronicles
- Chronic Mom
May is a huge month for advocacy and I’m amazed by all of it. The number of advocates participating in Fibromyalgia Awareness Day grows each year. It’s amazing to be a part of this vibrant community. I thank each and every one of you who are part of this journey with me.
Let’s check out what’s happening in May 2020!
As soon as we learned about COVID19 as a viral pneumonia, I wondered how long it would take before we’d start seeing a response in the ME/CFS and Fibromyalgia communities.
It didn’t take long.
Researchers have moved quickly on this because ME is often triggered by viral infections. Experts are now predicting we are going to see a rise in post viral diseases and I’m sure ME and Fibro are going to become larger problems for more people. We need more advocacy and awareness in this field so patients can be diagnosed correctly.
On another note, life has pretty much returned to normal here in Taiwan. But I don’t see our borders re-opening any time soon. I foresee borders reopening when a vaccine has been found.
I don’t leave home much, but when I do, I’m thinking ahead of everything I need to do to make it work. How do I get there? How many steps do I have to take? Will I need to navigate stairs or bring a pillow? Do I have all my meds?
Thinking ahead about how I’m going to deal with time outside my home always causes panic right before I leave my house. I’m getting better at this though!
The other thing that has always made me panic or feel very uneasy is how close people get. This has ramped up with COVID19.
Prior to the pandemic, I didn’t like people coming near me because everyone is touchy-feely. I have horrible allodynia which is pain that results from something that shouldn’t be painful. For example, people grabbing my arm, brushing against me, or even a slight bump against a wall or door causes burning pain.
You’d be amazed how many people like to clap you on the shoulder to say hello or grab your arm or leg to make a point. Most of my friends know not to touch me, but now the rest of the world is learning to stay away. (I hope… There still seem to be a lot of people who don’t get the concept of personal space or keeping up with social distancing.)
When people come too close to me or people come near me without a mask on, it makes me anxious and slightly panicky.
Anyways, typical me. I panic hard and then I’m fine. And every time I remind myself of that, I have to smile a bit.
My upbringing has definitely helped me become a chronic illness warrior. My parents encouraged us to try everything and they never let us quit or stop trying. My dad’s best words of wisdom when I was younger was his acronym for CAN’T, which means Certainly Are Not Trying.
Every time I said, “I can’t do this, Dad“, he’d tell me I wasn’t trying.
And you know what? Turns out he was right. I CAN.
My mom has always been my biggest supporter through everything. She is the only one in my family who makes an effort with all of it. I understand that my life is a lot to deal with and it must be awful to have a sick child. She has never stopped fighting for me, never stopped advocating for me, and has always supported me. She seems to know the right thing to say every time – as most moms do.
I think I’m most like my mom. She approaches everything with a ‘get it done’ attitude and has always encouraged me to do my own thing. My parents in general are very supportive and they are responsible for who I am today.
We’re not having any problems accessing anything here in Taiwan, but my family has had trouble accessing necessary supplies in Canada. This bothers me since I have plenty here for them. The government in Taiwan will let Taiwanese families mail supplies out to first-degree family members elsewhere in the world, but this is not an option for expats.
I’ve been an active community member in Taiwan for 14 years. I pay my taxes, we run a business here and employ locals, and we’ve participated in countless community events and charity events to help local charities.
Why can’t we all be treated the same way?
The other thing that has been bugging me lately in Taiwan is businesses discriminating against foreigners. Some businesses have said foreigners aren’t allowed to enter their venue. They haven’t taken into account the thousands of expats that have made their home here and haven’t even traveled recently.
This makes me angry because it’s discrimination. But I’m using this article to point out that disabled and mobility compromised people have already been dealing with this kind of business discrimination in Taiwan for ages.
No one has ever cared when I’ve mentioned how many places I can’t access as a disabled person!
I’M STILL INVISIBLE IN TAIWAN.
This is a great word that I’m going to redirect to my April post about Coping with Stress During A Global Pandemic for A Chronic Voice.
I find it very soothing to be with nature and love indoor gardening. It’s a great form of distraction for me. It doesn’t include light and sound, so it never triggers a crash, and I like sharing my photos.
I’ve been told many times that people really enjoy my gardening and flower page and find it very soothing in such uncertain times. In fact, I made this photo a few weeks ago. So I’ll reiterate and end with Sheryl’s words, which are also my own.
Everything is going to be okay.