“It feels so good to feel like a real person again.” A couple of years ago, my Hubby and I were leaving the park and heading to our local bookstore to continue our Saturday morning excursion, and I was feeling emotional. 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.
May is Fibromyalgia Awareness Month, and today 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.
With that in mind, each Friday for the rest of the month, I’ll be sharing ‘Top Tips’ from my fellow bloggers who also live with fibromyalgia.
My Story….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 I’ve learned over the years, 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.
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 added to my pain, fatigue and weakness. I realized I was spending so much energy on trying to manage my symptoms that I was neglecting my overall wellness.
That was a huge turning point for me.
When I first started blogging over 5 years ago, my blog was 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
As we talked about in What Is Wellness?, Wellness encompasses more than just physical health – it’s about the efforts and choices we make toward improving our health. It’s multi-dimensional and holistic, which means we’re not just addressing our physical well-being, but our overall wellness.
But because my physical health needed improvement, I started there. 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.
Now, a couple of years later, I’m feeling better than I have in years, and I’m able to get out and enjoy life again. My Hubby and I hit the trails every chance we get when the weather is nice. Of course, I still have flares sometimes, and I have to adjust my life to accommodate my symptoms, but that’s life with fibromyalgia.
Why Fibromyalgia Awareness Month 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 – or a friend or family member – live with fibromyalgia, please share this post, or the individual tips with them. As we talked about earlier, everyone’s experience is different, and you never know what might help someone.
What’s Your Tip?
If you live with fibromyalgia, what’s your top tip? What do you wish you had known when you were first diagnosed? Please share!