a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas.
The definition hardly explains what it is like to live with this illness. It is an oversimplification of an incredibly complex disorder. Why the sudden downer? Well, it isn’t really sudden and it isn’t really a downer, just reality.
It is the reality in which I live, a reality that has decided to slap me in the face recently. Winter is not my favorite time of year. My whole body aches, and the exhaustion is nearly debilitating. If I do one thing, I cannot do the other no matter how much I might want to. It is a perpetual balancing act that, in and of itself, is exhausting.
The kicker? You can’t see it. There are no bruises or red marks that indicate the pain I feel. There is no cough, no fever, no actual needles running up and down my arms (though that is exactly what it feels like). At best, there are bags under my eyes but no one thinks twice about those – I have four children, after all. I work from home as a marketing manager, writer, web developer, and publisher so I can sit at my pillow-padded chair with the heating pad on high in the softest pants I can find cuz anything less will have me crawling with the heebies all day long.
I wear the mask of your ‘typical writer’: mostly anti-social geekling-nerd hiding in her office with too many pens and books. Yes, it is me, but there is another me that watches all my friends and family get together for drinks and movies, nights out at the local bar that I don’t generally get invited to. Not because I am not welcome, but because the answer is already known: I can’t. I simply do not have the energy for it. If I do go out, or host something small with my neighbors, I pay for it later. No one sees that part so everything must be ok, right?
No one sees the looks I get when I park in the handicap spot (with my tag, I will add) and walk into the store. Why does she need that spot? There’s nothing wrong with her. What they don’t see is the struggle it takes for me to take those blessed steps into the store before I grab a cart and use it as a practical crutch to do my shopping because I am just too dammed stubborn to give in to this bs that plagues me. I will do it because my body says I can’t! I’m just that pig-headed!
What I have is invisible to the outside world. Even those closest to me sometimes wonder if it’s not just all in my head. Something this awful would almost have to be, right? Except that it isn’t. IF ONLY! I’d commit myself in a heartbeat and take the meds to make it go away!
But, where has all this come from? Why explain this invisible beast now? Because, two days ago I fell asleep at 7p and slept for 12 hours – and still felt tired afterward. Because my mind has been in such a fog that my words are starting to suffer. Because I hosted a Superbowl get-together for my friends and neighbors and am still recovering from it three days later. I should be editing my novella (that is rapidly gaining girth into a full-length novel; didn’t see that one coming) or working on my submission for Corrugated Sky, or any number of things on my list of things to get done. Instead I’m binge watching The Magicians and making sure my kids do their homework because that’s all my brain has been able to handle recently. Blog posting… I seem to be managing that ok; sort of. This took me two days to write. That should tell you something. I normally pump these out weeks in advance. Not this time!
More importantly, however, this is for awareness. I am not the only one that suffers this awful disease. The most vocal has been Lady Gaga – look what she does! Wow, the envy I feel there! But she pays for it; heavily. Morgan Freeman has said he suffers through this invisible illness as well. He has age on his side, though; he can just claim ‘old and crotchety’ and no one will really question it. It doesn’t make the disease any less hateful, just makes the stares a little more understanding in his case. While I like to claim that I am old, I am not, nor am I truly crotchety (though I have my moments). It is a disease that demands acceptance and understanding because nothing else, nothing else helps. Know that we try, we do; we try so hard to pretend everything is hunky-dory because that’s the only thing the world will accept when what you have cannot be seen.
For now, I will put my fingers back on the keys, pull out that novella and get back to work because that’s what I do; what I will continue to do until I have nothing left. That’s how I fight.
For more information about fibromyalgia or how you can help, please visit www.fmcpaware.org/