"Come on! It's just a movie! What's the big deal?! It's not like I'm asking you to go play football or anything."
"I know. I'm sorry. I'm just too tired today. I washed the kitchen floor this morning and it just drained me completely. Maybe next weekend?"
"Your floor isn't that big. How could it possibly drain you that much?!"
A deep sigh emanates from speaker two and then: "I've explained this to you a few times already. The Fi....."
"Yeah, yeah, yeah, I know. The fibro whatever it is. Sometimes I think you're just using that as an excuse to not hang out anymore. You always look fine to me. You even say you're fine most days."
"Oh come on! You know full well what that means!"
"Yeah, I know exactly what it means. It means you never want to do anything. You're just getting lazy. I miss the old you."
The first speaker hangs up the phone and to an empty line the second person mutters, as the heart breaks, "So do I."
The above conversation is a common one. Perhaps not word for word but the sentiments are the same. Those who witness Fibromyalgia often are left baffled by it's method of subjugating the sufferer, at times even doubting the validity of the diagnosis. It doesn't show itself as other illnesses do. Sometimes referred to as the 'dragon within', unless the individual is wheelchair bound, there are generally no outward signs to help prove we are ill. One can not tell merely by looking at us, that we have it. Those who live with it, however, know only too well how loud this illness can scream and just how easily that scream can bring a person to his/her knees.
Fibromyalgia is a neurological disorder in which the brain is convinced that we are being damaged. Constantly receiving pain signals, our muscles don't receive the healing nutrients they need. It can also affect every system in our bodies and is considered a form of arthritis.
Imagine the worst flu you've ever had. Think of how your entire body hurts, you can't think straight, how stiff everything feels. You have trouble breathing, every touch hurts, your dizzy. You're feeling very weak and just want to crawl away and hide until it passes. Now, as it is for many people who live with this, multiply that by five or ten. Now, envision yourself having to function everyday regardless. You have to make dinner, do housework, raise kids, take care of loved ones, go to work, deal with bills, etc. There is no cure for this. I've been doing this for over thirteen years now. I have, after all this time, no memory of what it felt like to be pain-free and only fleeting images of what it was like to move easily.
This disease does more than 'just' cause constant pain and horrible fatigue. It does more than cause memory problems, make us sensitive to fluorescent light, affect eyesight and hearing, give us IBS, make simple math hard, reading difficult, myofacial pain, TMJ Disorder, Restless Leg Syndrome, migraines, muscle spasms, weakness, weight gain or loss, intolerance to cold, throw off equilibrium, interrupt sleep patterns, allergies, sensitivities to medications, painful water retention, and so much more. Oh yes, it does so much more.
It destroys who we once were. It seems to steals our strength, our jobs, our independence, our intelligence. Worst of all, it steals our families and friends.
We are viewed differently with the onset of this. As our cognitive abilities are interrupted and we forget things and/or have trouble processing information because we're constantly trying to think clearly through the pain and fatigue, people misunderstand so we are called 'dense' and 'stupid'. We can no longer run and move as others do nor for as long so we are called 'lazy'. We are called 'lier' by those who refuse to educate themselves. If you're are single and have this, you notice the dating pool is now a puddle. Who is willing to date someone with limitations?
The question "Well, why can't you just deal with it?" is often asked. "You said you were fine. Now you're not? What gives?" When we say 'I'm good, thanks' it means that we're the same as we were yesterday, no bad flare-ups of pain or that we are good, compared to how we are on our bad days but we are not nor will we ever be what we once were.
Nearly every one of us who lives with this has at least one friend or relative who has stopped visiting, phoning, or corresponding because of the changes that ensue. Marriages have been ruined ( it had a hand in ending mine, he never understood and chose not to educate himself) and sufferers left lonely and alone. Depression can follow compounding our symptoms. People think that it can't possibly be as bad as we say. Unfortunately, it is. Yes, there are medications that can help ease the symptoms but they are not eradicated. These pills do not cure us. We remain afflicted with Fibromyalgia for the rest of our lives.
I and my life are mere shadows of what once was and what could have been. I have lost friends, had to reorganize how I do things, when I do things, and even what I do. I was once an person independent to a fault. I have had to learn to accept that I have so many limitations. For an individual as myself, that is a difficult lesson.
I am a shadow and yet, somehow, I am more. I am working part-time on a degree. My own children tell me I am a good mom, despite everything. I talk to hardly anyone yet I know the ones I do associate with, understand and accept me fully. I know more about compassion, empathy, and patience than I once did. I appreciate little things, small gestures of kindness more and I give them out more too. All in all, I might be a better person because of it. Now if we can just get more people to understand what we live with.....
My nine year old daughter comes bounding into the front room:
"Oooo! Whatcha writin' mom?"
"Just a piece on Fibromyalgia"
"Fibro...Fibro.....that's the type of arthritis thing you have, right?"
I nod and notice the glimmer of concern that crosses her face when we talk about it and wait for the comments and questions that usually follow. In the past, she was afraid the Fibro would kill me and she's cried more than once.
"It's why you hurt all the time and can't play with us, right?"
"Well, not how I'd like to, yes."
The look on her face changes again and a small hand begins to reach towards a plate on my desk and fingers inch over a piece of cheese there.
"Aaaaand it's why you can't run after me if I steal your cheese! I'm Queen of the Cheese! Muahahahahaha!"
After which, she darts from the room, laughing joyously, secure in the knowledge she has defeated the evil Dark Queen of Fungus in her life-long quest for the perfect piece of cheese. So I was later informed, at least.
Yup, have to enjoy the little things. Sometimes, the little things are all we left.