Purple Butterflies with text overlay: May 12th is Fibromyalgia Awareness Day

May 12TH Is Fibromyalgia Awareness Day

It feels so good to feel like a real person again.” I was feeling emotional as we were leaving the park and heading to our local bookstore to continue our Saturday morning excursion. We had only been downtown for breakfast and to the park. Now we were headed to to the bookstore before we went home. No big deal, right? So why was I so emotional? Because I’m finally starting to feel like the person I was before fibromyalgia came in and upended my life.

Today is Fibromyalgia Awareness Day, and I thought I’d share a little about my experience with fibromyalgia. Everyone’s experience is different. That may be one reason it has been so hard for anyone to come up with one consistent treatment that can help everyone who lives with this syndrome. That’s also why it’s so important for us to share our experiences with one another.

The Year My Life Turned Upside Down

I always say that 2012 was the year my life turned upside down, but it actually started a year or so before that. In the space of a few months, I had the flu, a bad fall where I hit my head on the street (thanks to my puppy), subacute thyroiditis, and terrible stomach problems. Fast forward 6 months, and I fell again when I tripped over one of those concrete things at the top of a parking space in a parking lot. This fall was really bad, and landed me in the emergency room.

I tell you all this because I think all these things so close together somehow contributed to my diagnosis of fibromyalgia in 2012.

Anyway, 2012 – We moved to a new city, and by the time we got there, I was in terrible shape. I could barely eat, my heart was flip-flopping all over the place, and I was in pain all the time. When I look back on it now, I don’t know how on earth I managed to help get everything unpacked and turn the new place into our home.

My husband had just retired from the Marine Corps and went back to school full-time. While he was in class, I sat on the bed and read or watched TV. I felt so weak, dizzy, and sick that I was afraid to go up and down the stairs unless I absolutely had to. That was how I spent my days for about three months.

One day I realized that if I didn’t somehow find a way to get away from that bed soon, I might never get away from it. I started by doing one small thing each day. It wasn’t much, but it was one thing more than I had been doing.

Slowly, step by step, I was able to get up and moving again.

The Light At the End of the Tunnel….Or Was It?

In 2013, we purchased our home, and moved again. This move was much easier, because we just moved from one place in the city to another. As we settled into our new home, I felt better, and I was able to do all those daily chores we all have to take care of. I started to think that maybe my days of having to spend the day in bed were over.

I couldn’t have been more wrong. As we talked about in Lessons From the Grandpa Tree, progress with fibromyalgia isn’t linear. There have been times when I’ve actually begun to think I was ‘cured’ because I was feeling so much better. Unfortunately, there have been just as many times that I’ve felt I was getting worse again. That’s just the nature of fibromyalgia.

In fact, in February of 2020, my symptoms were at the point that I decided I had to give up teaching our Life Group on Sundays. This wasn’t because I was in so much pain all the time that I couldn’t teach, but rather, that I needed to stop doing some things in order to concentrate on my overall wellness. I had avoided doing many of the things I really needed to do to improve my health because I was afraid they’d cause more pain and interfere with my ability to teach, or really, even to attend church. As I talked about in Dawn of a New Day, things always get worse before they get better.

A Major Mindset Change

Now I have to say that for the most part, I’ve been pretty lucky as far as having fibromyalgia goes. Many people suffer much worse than I do, and some have been living with it for many more years than I have. BUT the longer this went on, the more I allowed it to take over my life. Everything I did became about managing my symptoms.

Because I didn’t want to feel worse, I avoided many of the things that could actually make me healthier. I became more and more deconditioned, which ironically, added to my pain, fatigue and weakness. There came a turning point when I realized I was spending so much energy on fibromyalgia that I was neglecting my overall wellness.

That was a huge turning point for me.

As many of you know, this blog actually started as a blog dedicated to learning to thrive with fibromyalgia. What I realized is that I didn’t want to thrive with fibromyalgia — I wanted to thrive – period. You know, it’s kinda like when someone says, “you look good for your age.” You don’t want to look good for your age, you just want to look good period.

The fact is that I will most likely have to deal with the symptoms of fibromyalgia for the rest of my life, but I can’t continue to let them keep me from becoming as healthy as I can possibly be. I rededicated myself to improving my overall wellness.

Working Toward Wellness with Fibromyalgia

I started doing one small thing at a time. When you live with Fibro, starting small is absolutely critical. When I first started trying to be more consistent with my exercise, I would walk down to the curve in the street. That was only about three houses down. I felt kinda silly walking that short distance and coming home, but I was determined to do something I could do consistently.

After that, I was able to do some workouts with Pahla B on YouTube. Her workouts are great and I picked some that aren’t too strenuous, but I didn’t even do the whole workout to start with.

I’m finally at the point now where I’m able to be pretty consistent with getting three workouts in per week. Sometimes it’s walking, sometimes strength training, and sometimes it’s some type of mind-body or flexibility exercise.

And I’m finally able to go out with my Hubby on Saturday mornings and do some of the things we used to do before fibromyalgia. They’re at a much lower level – we’re not biking for miles or climbing a mountain yet – but we’re able to go out and enjoy each others’ company.

Why Fibromyalgia Awareness Day is So Important

Fibromyalgia is a life-changing syndrome. It not only affects people physically; it can impact all areas of wellness. Because it’s invisible, many people think it isn’t real. You can imagine how this can affect our emotional and social wellness. It can also affect our financial wellness because many of us can’t work any longer.

Raising awareness encourages research, which of course, can result in better treatment. It also helps people realize that it’s not, as some people think, just a ‘trash can’ diagnosis. Fibromyalgia is a real, specific set of symptoms. You know the old saying – knowledge is power. Helping to raise awareness increases our knowledge base and gives us the power to live our best lives.

If you live with fibromyalgia, what’s one thing you’d like people to know? If not, what’s one thing you’d like to know about it?

Have you written a post for fibromyalgia awareness? If so, I’d love for you to share your link below!

Blessings,

~Terri

Sharing is caring! If this post helped you in any way, I’d love for you to share it!

Purple butterflies with text overlay: May 12th is fibromyalgia awareness day

23 comments

  1. I’d like for people to know that it’s a constant. Just because I feel better today than I did a week ago doesn’t mean I’m cured. I’ve had it since 1987.

    1. Thank you so much for sharing Janet. I think what you mentioned may be one of the most difficult things for people to understand. It’s hard to comprehend how we can feel relatively ‘well’ one day and the next we’re struggling just to get through the day. Sending gentle hugs your way sweet friend.

  2. Thank you for sharing your story and for always being so encouraging with your blog. You do a wonderful job in raising awareness, Terri. “What I realized is that I didn’t want to thrive with fibromyalgia — I wanted to thrive – period” < I like that. You make a good point too about how life can start to hone in on ill health and suddenly your days are just about managing the symptoms. There's nothing else, and the person you once were fades gradually over time until you feel unrecognisable. There are so many things I'd like others to know about fibromyalgia (and other conditions) and sometimes I just want to explode. It's always bittersweet knowing others are going through something similar. I hate that anyone else has to live like this, but it's comforting to know there are others who 'get it', who won't judge.

    Sending hugs my dear friend. By the way, that park and the waterfall look absolutely beautiful! Be emotional, enjoy the bookstore trips, celebrate all the small achievements (though I'd say these are pretty huge!) 💜

    Caz xx

    1. Thank you so much Caz! I appreciate your kind words, and I appreciate the way you raise awareness about not just fibromyalgia, but other conditions as well. What you said – “suddenly your days are just about managing the symptoms. There’s nothing else, and the person you once were fades gradually over time until you feel unrecognisable.” – is exactly how I’ve felt until the last couple of months. That’s what made me so emotional that day after our walk in the park.

      I agree with you about the park – we have some beautiful parks and walking/biking paths around here, but this is my favorite we’ve visited so far. The path actually goes right through the creek below the waterfall. You can just walk right across the water.😊

      I hope you’re doing as well as possible sweet friend. Sending lots of love and hugs your way!

    2. I agree that this is such a wonderful resource. Its bittersweet to me that you have to educate so much. I wish we were taught about topics like these more <3

  3. Thank you Terri for sharing your story and consistently encouraging others through your life! You’re a wonderful person and a great message of hope.

  4. Lovely post Terri, I have reposted onto my blog, Stay sage and as positive as you are and take great care friend. No more falls.

    1. Thank you so much Bar! I appreciate your kind words, and your sharing it on your blog. How have you been? I ended up taking a break from all things blogging, and it seems I’ve spent the last couple of weeks trying to get caught up with everyone. I hope you’re doing as well as possible. Sending hugs your way sweet friend!

  5. i commend you Terri for sharing your experience with your health condition. Having first hand experiences and letting people know the trials and tribulations that you went through is valuable insight for those that are new to it. Great post!

    1. Thank you so much Mark! It’s hard sometimes to be so vulnerable. As a woman in the military for 20 years, I learned not to show vulnerability because it could be seen as weakness. That’s just how it was in a male-dominated career. As I get older, I realize that just being who I am and telling my story has the potential to help others who might be going through the same thing. And I’m old enough now not to care so much about what other people think lol. Hope you and your family are doing well dear friend!

      1. I’m so glad Terri that you are being who you really are. We need more people like you in the world to share your experiences and show others that true strength comes from within.

  6. I always learn something from every blog. Thank you for being sharing your knowledge (both book knowledge and especially your experiences with fibromyalgia. Once a teacher, always a teacher.

    Even though we have known each other and been best friends for many years, reading this post was helpful to me. I always want to know how you are feeling but I want to find the happy balance of focusing on all that is going on with you, which includes dealing daily with Fibro without putting you on the spot to share which makes you focus on fibro. In this blog I loved this praise. – I want to thrive. Period! You know, it’s kinda like when someone says, “you look good for your age.” You don’t want to look good for your age, you just want to look good period. 💗. Thank you for being so open – it helps everyone who reads your blog. So thankful for all you do to live life and share your journey with me and others. You have always been an inspiration to me. Love ya.

    1. Thank you so much Sarah! As you said, we’ve been best friends for many years, and you’ve always been so supportive. A lot of times you can tell by my voice when I’m not feeling well, and you do a great job of showing concern without, as you said, putting me on the spot. You have no idea how very much I appreciate you, my “sister from another mother.” I love you!

    1. Thanks so much for sharing Jennifer! I think switching our focus from what we can’t to what we CAN do is absolutely necessary when we live with conditions that cause pain and limit our energy. Sending hugs your ways sweet friend!

  7. I’d like for people to know that Gabapentin is pretty effective for treating fibro flare ups, without the crazy side effects that are worse than our everyday symptoms. 2 rheumatologists later, and no hope in sight, it was my PCP who prescribed it for me b/c I had a horrible bout of trigeminal neuralgia that was triggered by a viral infection. Did a little research, and found out that gabapentin is also used for treating fibro. I’ve been taking it on days that I have flare ups, and it sends them packing. ❤️ I’ve been waiting for a light at the end of the tunnel since 2010; wasn’t formally diagnosed until 2016 but had flare ups for 6 years prior and had no idea what was wrong with me. There IS hope! 💜 Stay strong, fibro warriors! 💜

    1. Thanks so much for sharing! I’m so glad you’ve found something that helps you so much. Sometimes we just have to experiment until we find what works for us, don’t we? Thanks for following – I tried to visit your blog, but WP says it can’t be found. That happens sometimes; I’m not sure why, so I’ll try again later. I look forward to getting to know you!

      1. Yes, we’re science’s largest guinea pig population on the planet. Lol! I hope that others can find a solution that helps them as well. 💜

        WordPress did that to me earlier today when I tried to access someone’s blog. They could be updating their algorithms.

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