“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.”
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
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
L Leg cramps, restlessness, and pain
G Gastro problems – IBS, nausea, diarrhea, constipation
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
I would prefer my “F” words include Fabulous, Fearless, and Fun.
I was diagnosed with Fibromyalgia in 2000 and have said/thought many a curse word since that time. Fibromyalgia. Fibro. Fibro-flare. Flare. FMS. Fatigue. Fog. Frustration. Failure. All of these have become the other “F” words to me. I try to live by the power of positive thinking (hence, the name of my blog), but until you live a day in my shoes it may be hard to understand why even sometimes it is easier to smile and put on a happy face rather than truly answer the question of “How are you?” Because trust me, you don’t want to hear about how I am tired, hurt all over, didn’t sleep last night, and oftentimes feel like a failure because I can’t do the things I want to do.
Fibromyalgia is a complex, chronic pain disorder that causes widespread pain and tenderness.
I often refer to the fact that I have fibromyalgia in my posts, but many of you might have found your way here through some of my other musings, so I thought I should introduce some of you to this condition.
“Doctors don’t know what causes fibromyalgia, but it most likely involves a variety of factors working together.”
Here are some ugly truths: Women and men experience pain differently. Doctors are less likely to treat women’s pain. Health issues that disproportionately affect women are not studied as much as those affecting men. It can take women multiple visits and sometimes years to diagnose their medical issues and chronic illnesses. And when painful conditions like Endometriosis and Fibromyalgia don’t have a simple test for diagnosing, those visits and months and years can prove both emotionally and physically draining when you’re already in pain and still having to fight for a diagnosis.
Chronic stress can cause extreme duress on the fibro body and your adrenal system.
Managing my fibromyalgia is a careful balancing act of self-care. This involves eating healthy, getting adequate sleep, working out, and taking time for me. Living with fibromyalgia means that normal, every day stressors can place an additional hardship on the fibro body. So when you are faced with an extended period of stress – bad flare or other health crisis, work deadlines, family emergencies, or simply just getting through the holidays – you can place an extreme amount of duress on your body and your adrenal system.
“Adrenaline is a hormone secreted by the adrenal glands, especially in conditions of stress, increasing rates of blood circulation, breathing, and carbohydrate metabolism and preparing muscles for exertion.”
You can feel this when your heart starts to race or your hands or body sweats. Adrenaline is also responsible for that fight-or-flight mechanism that can give people extraordinary strength in times of crisis. And an over-exposure to the stress hormones can tamper with your overall well-being.