Chronically Fly: Living with Pain You Can’t See

What do you get when you mix a savvy, sassy fly girl and a relentless chronic pain condition? You get a “Fly Girl with Fibro” and since I am a child of the 90’s, fly is the only way I know how to be. I do everything with a little flyness and a lot of finesse and I do so while battling multiple invisible illnesses including Fibromyalgia and Depression.

And I get it, when people see me; it’s hard to believe that I deal with a chronic condition. I’ve even heard, “aww but you’re too pretty to have to deal with something like that.” I am always dumbfounded when I hear things like that and although it’s meant to be a compliment, it just comes off so ignorant, because in reality, illness doesn’t discriminate. I get up, do what I got to do every day which includes working a full-time corporate job, marketing and promoting my own brand, raising three active boys, being a mom, sister, auntie, daughter and friend and make it look effortless while I’m doing it. It’s hard for people to understand because sometimes people don’t believe what they can’t see.

So, not only am I battling my body every day, I’m battling the world, fighting for them to believe that I’m really ill. I see the blank looks I get when I park in a handicap parking space, because, after all, my doctor did approve me to have a disability parking tag. And it’s needed because I can’t walk more than 200 feet without my back and hips starting to ache. But, people don’t see that. They see a cute girl with her hair, makeup and nails done so there is no way she can be “disabled.” I can only imagine what they are really thinking. I need people to realize that all disability isn’t visible.

And that’s the cruel reality about living with an invisible illness, people can’t see it. What’s even worse is that every day you never quite know how you are going to feel. Some days I wake up feeling ok and others I wake up feeling like I’ve been run over by a bulldozer and that’s even if I get any sleep at all. Most nights, I toss and turn from my hip and back pain, so it’s hard to fall asleep let alone get into a deep sleep. If people could see outside, what I feel inside, they would see a body that looks beaten up, painted with black and purple bruises. But, since the world can’t see it, we get accused of lying or over exaggerating our symptoms.

And that’s where “Fly Girl with Fibro,” was born. Birthed out of the inherent need of feeling like I always had to explain and defend myself and my “imaginary” symptoms. Except, they aren’t imaginary, for Fibro sufferers, this pain is very real. “Fly Girl with Fibro,” aims to educate people who don’t understand our pain, maybe even never heard of it, while encouraging and empowering others to share their own stories and live unashamed in their truth. My hope is by sharing my story with the world; I let people know they are not alone in their struggle.

 According to WebMD, “Fibromyalgia syndrome affects the muscles and soft tissue. Symptoms include chronic muscle pain, fatigue, sleep problems and painful tender points or trigger points.” And as simplistic as that description is, Fibro is anything but simple. The type of pain and severity of the pain ranges from throbbing, aching, stabbing, shooting or even pulsating. Ask any sufferer and they can probably give you a myriad of adjectives to describe how the pain invades their bodies.

Fibro comes with a slew of other symptoms including chronic fatigue, insomnia, headaches, irritable bowel syndrome and depression, just to name a few. It’s also difficult to get a diagnosis because so much about it is still unknown and yet 3 million people in the US suffer from it. It’s also hard to treat because it’s not inflammatory condition, like arthritis, and it’s thought to actually be overactive nerves causing the pain.

So, what’s a Fly Girl to do? How do I combat something I can’t even see but can so vividly feel? I push through. Every day, I have to literally push through the pain. I don’t have time to wallow in the sadness, isolation or loneliness that I sometimes feel. There are kids to be cared for, work to be done and bills to be paid, so I have to figure how to do those things while maintaining my own sanity, because let’s be honest, being in this cycle of pain and uncertainty could certainly drive you crazy. It’s so easy to get swallowed up in the multitude of my pain but I do my best not too. I won’t go down easy or without a fight.

I didn’t realize how necessary self-care really was and perhaps if I had practiced it a little more, maybe I wouldn’t have developed this life-altering condition. Who knows, but all I can do now is participate in things that are conducive to my overall wellness and wellbeing. Doing things that promote a positive and healthy lifestyle, which also includes taking care of not only my physical but mental and emotional health too. I try my best not to look like what I go through, so I try to look as good as I can. To me, when you look good, you feel good. And as superficial as that may seem, you have to do what works for you, even if that means putting on a little blush and lipstick.

Luckily, I have a strong support system, one that I didn’t have to force to believe me. They keep me encouraged and check-in on me. And that’s important, surrounding yourself with love and support because you won’t get through this alone.

Take my story as a cautionary tale, fellow Fly Girls. “Self-care is important and necessary,” and while it’s easy to succumb to the demands of our lives, the magnitude of our goals and caring for everyone besides ourselves, it will all eventually take a toll on you.  Remember that self-care isn’t selfish. In the words of my Grandma Sara, “you’re no good to anybody if you’re not good to yourself.”

Trina Nicole

 

A self-proclaimed Fly Girl, Trina Nicole is a triple threat author, blogger and podcaster using her platform to educate, encourage and empower others that may live with any kind of “invisible illness.” Trina is also the mother of 3 beautiful boys. 

Contact: www.flygirlwithfibro.com 

Instagram: @flygirlwithfibro 

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