What time is it?
The angry red font of my clock blinks at me to the rhythm of the invisible army of ants crawling up my legs: 3:43 AM.
I roll over and forcefully slam my legs against the bed, trying to dissuade the nasty creatures. The sudden movement stuns the army, sparing me for a moment, before they angrily begin biting into my skin. I vigorously rub my legs against the sheets, back and forth, trying to knock the little beasts loose. I suppose it only infuriates them further as now they’re stabbing my hip socket with a sword.
Okay, maybe it’s not a little army of ants. Maybe it’s a giant centipede with venomous spiked toes that sink into my skin, dosing me with an early demise, and a pickaxe tugging my femur out of socket.
I can’t take it anymore and knock the blankets back, then scratch like mad at my already bruising skin. Soon the purple rash has turned a dark crimson and I realize I’ve broken skin with the uncontrollable desire to scrape the invisible creatures off.
I quickly move to get out of the bed, before the blood can drip onto my new sheets, but am suddenly winded from the change in position. I sit there, poised at the edge, gasping for air and trying to see around the black splotches consuming most of my vision. The anxiety hits. Tears form, either the result of the pain in my chest or the feeling of my legs slowly pulling out of socket. My feet are anxious to reach the floor that is too far away, pulling slowly away from my ankles as they dangle just inches above the hardwood.
The anxiety monster isn’t loosening his clutches on my rib cage, but I am finally able to see and stand. I listen to the sound of fifty-seven joints pop back into place as I rise, the sound resembling a machine gun with a suppressor on its barrel.
“Breathe.” I tell myself between gasps of pain and start to hobble to the bathroom, legs sore and creaking from the strain, arms outstretched to hold my elusive balance. The room is dark and my head is spinning, am I even upright anymore?
After what feels like an hour, I reach the restroom and proceed to purge my body of everything I’ve eaten in the last 24 hours. It’s not a purge by choice, but the maddening pain has made me nauseas. I’ve forgotten why I’ve come to the restroom in the first place, but apparently it was needed.
I’ve been tossing and turning in bed for half an hour now, and still I can’t catch that ever elusive sleep. When I finally feel as though I may slip off into the land of dreams, I’m caught in the in between where the my body confuses the blood in my veins for battery acid. Everything burns. Everything itches. Everything aches. Everything hurts. Everything.
I can’t breathe. I’m scared. Is this real? How? How can it be real?
Someone help me!
God. Please. Help me.
I don’t like to talk about it, mainly because being around someone who only wants to discuss their pain in life can be quite a drag. When friends and family ask me how I’m doing, I silence the urge to tell them that I feel like I’m dying without the relief of death. Instead, I say: “I’m doing.”
This is hopefully enough to convey that I’m not well, but I’m not unwell either. I’m normal. Well, normal for a FMS warrior.
Fibromyalgia does so much more than give you intolerable pain. Actually, I’d venture to say that if it was only pain, it’d be tolerable.
It’s a monster that steals your breath in the night so that you wake up suffocating. It steals your ability to go on a casual stroll with a boyfriend. It steals your stamina allowance for normal work hours and normal sleep routines.
It tells you that you’re starving, then makes you vomit foods that you dared to swallow. It tells you that you’re dying of thirst while it gives your bladder the workout of its life. It yanks your joints out of socket and pops them back in before you can blink, leaving you with wind-knocked-out-of-you pain and no proof of why. It covers your skin in rashes and your face in acne, it sags your eyes and makes your smile all but gone.
It makes you forget to breathe, forget where you are, forget the names of your closest friends and family. It leaves your mouth dry and your skin slowly cracking, even as it makes you sweat buckets by the hour. It leaves you in a wicked cycle of exhaustion that gives you pain that keeps you awake that makes you more exhausted that gives you more pain that keeps you awake.
It takes away your ability to pursue passions, dreams, joys. It convinces you that you’re crazy, that everything you feel is in your head. It takes the parts of you that used to thrive and strangles, buries them. It makes you want to question everything, every choice, every person, every action, every thought.
It’s an invisible monster, though a hideous beast if ever seen.
And it affects so. many. people.
3-6% of the world’s population, 200-400 million people.
I’m one of them.
Next Friday, May 12th, is awareness day for the chronic illnesses of FMS (Fibromyalgia), CFS (Chronic Fatigue Syndrome) and ME (Myalgic Encephalomyelitis). This day is special because it’s the birthday of Florence Nightingale. She is a woman known by many for her valiant efforts as a nurse on the battlefield, and known by few for her own valiant battle against CFS/ME.
I want to challenge you to use this upcoming awareness day to prove your awareness.
Go above and beyond for that person who suffers silently day in and day out. Give them flowers, a card, a note scribbled on a receipt. Let them know you see them. In all their misery. In all their pain. They are real and loved and cherished and you are aware of the battle they’re fighting.
Be careful if you hug them, because what is comfort to you is pain to them, but be sure to offer one nonetheless. Sometimes we need a hug in spite of the pain it will inflict, and if we don’t, the offer means just as much as the hug itself.
Bring a meal to someone who doesn’t have the strength to get out of bed and cook, something they used to passionately do for others. Weed the garden of someone who once took pleasure in their green art but can no longer do anything aside from look out the window. Drive them around with the windows down so they can sit peacefully and see new sites for their weary eyes.
Don’t just say you’re aware of their chronic illness, show them.
If you’re the one who is ill, take the day to care for yourself. If you can, push through whatever ails you to do something the old you would have loved. If you can’t, paint the image in your mind and smile at the memories. Don’t let the day be sad, but powerful. Show the world your pain, your weakness- your triumph.
Grin at yourself in the mirror, appreciate that you’re still here, still fighting. You’re a warrior. You may have wounds and scars, you may bleed and cry in the still of the night, but people see you. They see a champion.
So chin up, Darling. You’re doing great.
Please share this post. Spread the word. Let others know of the battles the chronically ill face. Inspire others to inspire us. We are strong, but we are also weak. We need you. We’re only a million in a sea of billions. But with you, we can make a difference.