Fibromyalgia Awareness Day on May 12 and Chronic Voices
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. Thank goodness it’s one of my favorite colors!
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.
However, this post has been written specifically for A Chronic Voice’s May link-up party.
Sorry about the bragging there!
I’d like to give Sheryl a huge shout-out for advocating for all of us. She is posting about Lupus Awareness this month while helping other bloggers get their messages out, so be sure to stop by her site and check out all the great articles coming in through her monthly meet-up.
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 fibro before so if you’d like to take a look at previous articles that I’ve written about fibromyalgia, here are a few to start with:
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 this year.
Here are my favorite ten fibromyalgia advocates:
- Brainless Blogger
- The Disabled Diva
- February Stars
- Counting My Spoons
- Being Fibro Mom
- Fibro Pain Chronicles
- Chronic Mom
- Fibromyalgia News Today
- Melissa vs. Fibromyalgia
Finally, May is a huge month for advocacy and I’m amazed at everything that is happening this month. In order to recognize everyone, I tried to fit as many awareness days in as I could on this PURPLE graphic, followed by our May writing prompts.
I can’t remember the last time I’ve put two blog posts up back to back, but for Sheryl, anything.
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 been 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. Thank goodness I don’t live in North America! I never thought I’d say that, but I’m watching people flout the rules constantly in the news these days. When I’ve ventured out of my home in Taiwan, people seem to be doing a better job.
Asia is very well known for its lack of personal space, so I genuinely hope that this lesson sticks!
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.
Please think about the places that people like me have never been able to enter because a business doesn’t include disabled customers.
I’m very good at letting establishments know in advance when I’m coming, but some of the things I’ve encountered here are just unbelievable. In October 2019, a venue that I used to visit frequently was horrible to me. I let them know I was coming. I asked for a chair with a back.
That night, one of the staff threatened to drag me out of the venue for not pulling in my chair far enough. I wasn’t in anyone’s way and have the video to prove it. I pushed my chair back a few inches so I could put my feet flat on the ground.
I told him I was disabled. I told him I’d called ahead. He could’ve moved me to the other side of the table, but instead he harassed me all night. The final straw came when he threatened to physically remove me from the venue!
I was in tears and so shocked, but that fired me up enough to go up and ask for the microphone. They gave it to me, so I told everyone what was going on and asked someone to get this man away from me. Then he rushed me on stage! I thought he was going to hit me with the mic!
I ended up filing a police report about this incident. The owners and performers, who WERE friends, said they would follow up with me after PRIDE. No one ever followed up, so I’m vocal about which business this is and have told people what happened to me there.
That’s unacceptable and that’s what I deal with in Taiwan. Now you know why I panic when I leave my house.
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.