Fibromyalgia Awareness Day on May 12 and Chronic Voices

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Fibromyalgia Awareness Day on May 12 - My Several Worlds
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!

Symptoms of Fibromyalgia by Open Medicine Foundation
Fibromyalgia illustration from Open Medicine Foundation. Diagnosis symptoms include problems with jaw, joints, skin, muscle, eyes, urinary and reproductive system.

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:

Living within the Limitations of Fibromyalgia

Learning to Love Your Chronically Ill Body

What is a Flare?

My Flare Survival Kit

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:

  1. Brainless Blogger
  2. The Disabled Diva
  3. February Stars
  4. Counting My Spoons
  5. FibroDaze
  6. Being Fibro Mom
  7. Fibro Pain Chronicles
  8. Chronic Mom
  9. Fibromyalgia News Today
  10. 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.

May Chronic Illness Advocacy - Carrie Kellenberger My Several Worlds

I can’t remember the last time I’ve put two blog posts up back to back, but for Sheryl, anything.

FORESEEING

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. 

PANICKING

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!

UPBRINGING

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.

ACCESSING

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.

Segue into…

SOOTHING 🙂

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.

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Post Author: Carrie Kellenberger

I'm a chronically ill Canadian expat who has been living abroad in Asia since 2003. I moved from China to Taiwan in 2006. My husband and I have owned our own business in Taiwan since 2012. In addition to my own work, I've been writing professionally about Asia, travel and health advocacy since 2007, providing regular content to several publishing companies and travel publications in Asia and North America. Follow Carrie on on Twitter @globetrotteri or on Instagram at https://www.instagram.com/carriekellenberger/.

15 thoughts on “Fibromyalgia Awareness Day on May 12 and Chronic Voices

    Naomi

    (May 13, 2020 - 5:26 pm)

    My word, what a collective of invisibilities! I can feel your anger and it’s totally justified. I hope writing about it helps at least in a small way.
    I love the photo and think plants and flowers really are very helpful. Apparently even looking at photos helps, if you can’t be outside in green environments so must be good having them close to you. Take care 🙂

      Carrie Kellenberger

      (May 14, 2020 - 4:27 pm)

      Hi Naomi! It actually helped a lot to just say what happened in October. I had no idea it was affecting me that much until I wrote it down. The worst part about it is that the owners and performers were friends. I expected them to help me when this was happening and they just brushed it under the table and said they needed to hear what others saw. It was humiliating and very scary. I really thought that man was going to hit me.

      I was already experiencing mild panic attacks from having to think ahead about outings, but after that happened, they got much worse. That’s ok! I’ve moved my outing hours to daytime hours only and I’m much better with the company of plants and cats! 😀 Thanks so much for stopping by. Wow, your Etsy page is awesome!

    Anne

    (May 14, 2020 - 6:05 pm)

    I’m sorry you have so much to deal with medically but it sounds like your parents did a good job. That incident you described sounds horrific, I’ve experienced some prejudices being a in a wheelchair but no-one has ever been particularly nasty. I’m glad you stood up for yourself but sorry you wasn’t supported afterwards. I’ll be popping by again now I’ve found you .

    JacQueline

    (May 16, 2020 - 3:27 am)

    Thank you for this thoughtful blog. It sounds like things have been very complicated, but I’m so glad you have made your voice heard for the many who stay quiet and just accept the limitations. I hope you don’t mind, I’m praying today is pain-free, or as close as you can get to that.

      Carrie Kellenberger

      (May 23, 2020 - 4:36 pm)

      Thank you so much for stopping by! Today hasn’t been bad. It’s plum rain season here in Taiwan and things always get a bit more amped up with torrential downpours, but one day at a time. I’ve learned a lot with this journey. I’m sure many of us have and I’m finding similar types of stories from friends who also suffer from invisible illnesses and chronic illness. Take care. I hope today is a good day for you.

    Melissa Reynolds

    (May 24, 2020 - 3:57 pm)

    Thank you for including me in your list of top 10 advocates!! What an honour to be alongside that team of people in any list. Thanks for this great article too- I’m going through your list of fibro posts up there too 🙂

      Carrie Kellenberger

      (May 24, 2020 - 4:28 pm)

      Hi Melissa,

      It’s my pleasure! There are some really great fibro advocates out there. I enjoy reading up on what everyone is doing and how they are coping. It’s so interesting to see comments coming in from so many different countries. I will do better at making sure I catch your articles when they first come out!

    Claire

    (May 24, 2020 - 4:02 pm)

    I always find it so interesting reading posts for Sheryl’s link up, and will definitely be doing my own next month. The prompt of soothing is such a positive one, and I would have written the exact same thing – I love plants and gardening and find it so restful. Glad you have that activity to find some relaxation and calm 🙂

      Carrie Kellenberger

      (May 24, 2020 - 4:32 pm)

      Hi Claire,

      Me too! I’ve written just for those prompts in the past, but sometimes it’s nice to sync them with a specific post. I’m just grateful for the opportunity to write about a few things that I wouldn’t make into a full length post. It’s great to unload sometimes, isn’t it?

      Ikebana, the art of Japanese flower arranging, is a hobby that has been passed down from my grandmother. I got started with indoor gardening first, but when I finally found some kenzans here (flower spikes), I was able to get back into ikebana. I practice that more than anything and find flower arranging and indoor gardening to be very zen. That’s what my weekends are full of. I’m slowly turning flower arranging into a small side business here in Taiwan. It’s nice to have a little side hobby that helps with finances. Plus I get to work with gorgeous flowers – always fun and inspiring.

    Katie Clark

    (May 25, 2020 - 8:07 pm)

    I’ve learned that having an invisible illness, even with my friends and family, is one that others don’t want to hear about. As long as I’m going about normally, all is well. When I’m struggling, I’m alone. When I bring up something going on in my body/life, it tends to be something that is brushed off. While I loved seeing my family at a labor day get-together at our house (outside social distancing rules followed with a small group of 10), I feel separate. While I don’t want to go on and on about what I’m dealing with (both the goods and the bads of dealing with FMS), I would like that they at least acknowledge I am dealing with it . I think it makes them uncomfortable.

      Carrie Kellenberger

      (May 27, 2020 - 5:06 pm)

      I agree. I know it makes certain people uncomfortable. I’ve even started getting comments about seeking attention when I crash, which is simply not true. It’s a genuine crash and when it happens, it’s very distressing for me. I think we get these reactions because healthy people really don’t know how to react or what to say, and after it has been years of the same thing, what is there to say? It’s brushed away to an extent.

      Last summer while I was home, my dad asked me what fibro is! I couldn’t believe it. How can I have suffering from this for so many years and he’s asking me five or six years later for a basic explanation? This site was originally started FOR my family and friends. I was so shocked and then I realized a while later that some people just don’t want to know or just want to know what you tell them.

      When someone says they took the time to look up what I have, I’m always grateful. Personally, I’ve found that those get-togethers are really hard now and I am finding that I’m avoiding them more and more, especially if it’s more than 4 to 6 people. Toni Bernard’s articles on Pyschology Today taught me that it’s ok to miss these things if it’s going to damage your health or make you worse. Getting over the disappointment is hard, but at least I’m not struggling to be present at these kinds of things. That’s a whole new level of exhaustion that I just can’t deal with anymore.

    Rhiann

    (May 29, 2020 - 5:15 am)

    Hi Carrie,

    What a brilliantly thorough and thought-provoking post, and beautifully written. The post is a fantastic one in raising awareness of fibromyalgia and the effects it can have on those living with such a condition. I am sorry to hear that have endured so much medically, but it truly sounds you had amazingly supportive parents who made it somewhat easier to deal with.

    Take care, Rhiann x

      Carrie Kellenberger

      (May 29, 2020 - 2:14 pm)

      Hi Rhiann,

      Thank you so much for stopping by! It’s always so good to hear from you! Perhaps I unleashed a little too much with this post, but it’s amazing how therapeutic it can be just to write it out! Looking forward to more of your updates, as always.

    Meara Mullen

    (June 8, 2020 - 11:00 pm)

    I am so sorry you were treated so horribly at that venue. I would never want to leave my house if that happened to me.

      Carrie Kellenberger

      (June 9, 2020 - 2:57 pm)

      Hi Meara,

      Thank you so much. Honestly, since that happened, I haven’t been out! I stopped going out in the evenings completely and I’ve said no to show invites. I’m happy to meet friends for lunch, but dealing with that kind of a situation in the evening – I never want to experience that again. My husband has encouraged me to go with him if we can go together and maybe that will happen later. For now, I’m just avoiding everyone that was involved with that situation and I’m trying not to think about it too much! Thanks so much for stopping by, Meara!

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