“Never let the things you can’t do, stop you from doing what you can.”
Fibromyalgia Awareness Day was yesterday, but it’s also recognized for the entire month of May. Fibromyalgia Syndrome is marked by widespread musculoskeletal pain, fatigue, and sleeping problems. The result of this is often that those of us with it are a shell of our former selves, too fatigued or in pain to carry on the life we once led.
While running marathons may no longer be in our wheelhouse, let’s not forget there are still plenty of things we can do and enjoy in life. We may have to adapt or take things in moderation, but that doesn’t mean we have to live a life of loneliness and isolation.
“Never let the things you can’t do stop you from doing what you can.”
Ronald Reagan
Just like Ferris Bueller says at the end of the movie, “Life moves pretty fast. If you don’t stop and look around once in awhile, you could miss it.” So my fellow fibrowarriors, my hope for you is that you find something you can do so you can enjoy the life you have.
May is Fibromyalgia Awareness Month and May 12th is Fibromyalgia Awareness Day, so this post is meant to do just that. Raise awareness. Give readers a little glimpse into what it is like to have this daily companion in your life.
While some may not understand what it is when you explain it, they can probably relate to the occasional sleepless nights or aches and pains. Fibrowarriors have these symptoms on most days.
One recent, restless night when I was experiencing a lot of pain and couldn’t sleep, so I jotted a few things down to describe Fibromyalgia. I couldn’t stand the sheets to touch me. My mind was racing. Sleep was evading me. I tried essential oils and pain relievers. After maybe 2 hours of sleep, I got up and went to work the next morning.
This is my life with fibromyalgia.
Never easy. Never predictable. Never fun.
F Fatigue, flare, forgetfulness
I Insomnia
B Brain fog, brain won’t stop racing
R Restlessness, Radiating pains
O Overactive, firing nerves
M Myofascial pain, Morning stiffness
Y Yearning to be pain-free and be my old self
A Anxiety
L Leg cramps, restlessness, and pain
G Gastro problems – IBS, nausea, diarrhea, constipation
I Itching
A Aching everywhere – bones, joints, and muscles
They say you never really understand someone until you’ve walked a mile in their shoes. So if you encounter someone with Fibromyalgia and you think they don’t look sick… Think back to the last time you had the flu and your body ached all over, or the last time you couldn’t sleep but still had to go to work the next day, or perhaps even when you forgot where you left your keys. And then imagine what it would be like to experience that some days, most days, or even every day.
Now you’re starting to get a glimpse of Fibromyalgia.
P.S. I don’t often like to take pictures of myself. These days I am usually tired and don’t feel “picture ready.” But since it’s also Mother’s Day today, I wanted to share some pictures of me with my mom and my kids. This is the face of Fibromyalgia.
Living with chronic condition like Fibromyalgia can be anything but joyful most days of the week. You are in pain, tired, and can be experiencing a myriad of other symptoms at any one time. And you often feel alone.
Then there’s the fact that you usually have to explain to people just what the heck Fibromyalgia Syndrome is and the fact that there is no good understanding of what causes it, thus there’s no cure as of yet. This alone can spin you into a life of social separation and loneliness.
It is widely believed that artist Frida Kahlo also would have been diagnosed with Fibromyalgia, if there had been that diagnosis during her time. Her art depicts chronic pain and her diaries reflect a life filled with physical and emotional pain. Yet, she continued to do what she loved, which was to paint, and toward the end of her life she turned her attention to capturing everyday existence.
“I used to think I was the strangest person in the world but then I thought there are so many people in the world, there must be someone just like me who feels bizarre and flawed in the same ways I do. I would imagine her, and imagine that she must be out there thinking of me, too. Well, I hope that if you are out there and read this and know that, yes, it’s true I’m here, and I’m just as strange as you.” Frida Kahlo
The Two Fridas, by Frida Kahlo. Image captured at the Dallas Museum of Art, March 17, 2017.
This year’s theme “Helping yourself…while helping others” reminds us that you feel better when you help others living with FMS.
May 12th each year has been designated as Fibromyalgia Awareness Day. This year’s theme “Helping yourself…while helping others” reminds us that you feel better when you help others living with FMS. Although I was diagnosed with it in 2000, I have just in the last few years started sharing my journey. I started my blog to share my strategies for life with fibromyalgia and to inspire others to seek healthy lifestyle changes and find joy in their lives, despite those challenges they might be facing. Continue reading “Fibromyalgia Awareness Day”
May 12th each year has been designated as Fibromyalgia Awareness Day. For most of us suffering with Fibromyalgia Syndrome every day is really awareness day, as explaining this condition to others is part of the game. It is a “silent condition” that it is ill-understood. We don’t always look sick, but we may be exhausted, in pain, and suffering silently from one of the hundreds of symptoms associated with this. Fibrowarriorsmany of us call ourselves, as we just keep on keeping on. People may have heard the term from a drug commercial on TV or from the news of Lady Gaga cancelling part of her tour, but do they really understand it?
My Mantra is: “I have fibromyalgia. It does not have me.”
Every day is Awareness Day for those who suffer from fibromyalgia.
Every year May 12th has been designated as “Fibromyalgia Awareness Day” to shine a light on this invisible illness. Most of us who suffer from this chronic condition feel that every day is our awareness day, as we often have to explain what it is to people. Trust me when I say it is more than what you see in the pharmaceutical commercials on TV.
For those of us who live with fibromyalgia, we are painfully aware of it everyday. But May 12 has been designated to educate others. The theme this year is “Your Voice Matters” to call attention to the fact that everyone has a say in education, awareness, and making changes to help those who suffer from chronic pain.
What it Is
As I described in an earlier post, extreme fatigue, sleeping issues, and that “I-just-got-run-over-by-a-Mack-truck” feeling are the most prevalent symptoms for me. Other common symptoms of fibromyalgia include:
Constant dull ache on both sides of the body and above and below the waist
Tension headaches
Inability to concentrate on tasks
Irritable bowel syndrome
Depression
Fibromyalgia is the second most ailment affecting the musculoskeletal system after osteoporosis. Source: http://www.ecarediary.com/Blog2713
Sounds great, huh? Lucky me, as I have both! Diagnosed with Fibromyalgia in 2000 and with Osteoporosis in 2015. I know and live with chronic pain, but try my best not to let it get me down or slow me down. And then there are all of the other weird ailments that get lumped in with this condition, for lack of any other explanation. Here’s a list of 100 Symptoms of Fibromyalgia. I have probably had most of them at one point.
More Reading
So in the spirit of helping with awareness, here are a few other websites and bloggers I follow that write about life with fibromyalgia:
Counting My Spoons where fellow fibro-warrior Julie writes to educate others on many health issues
Dr. Murphree’s site has good information on the condition; listen to one of his conference calls
Read my earlier post of how I cope – healthy lifestyle choices are the best methods for me and I feel it when I make bad eating choices or have high stress levels
My Voice Matters
Hopefully I have provided *a little* awareness on this “invisible” condition. So the next time I seem a little grumpy or am moving slowly, it’s probably because when I crawled out of bed and kicked fibromyalgia in the butt that morning, it kicked back.
Do you have any good resources for fibromyaglia or coping with chronic pain to share?
