A Couple of Crazy Ladies: A Life Interrupted

I have Fibromyalgia. Although I wasn’t diagnosed until 2007, I’ve had it since I was about 10, so I’m not sure I remember how to live without it. The difficult thing, however, is to remember to live with it.

I don’t recall my last day without pain. I know that my first pregnancy was almost pain-free, and my second pregnancy nearly was –- I mainly battled fatigue during that one, but I honestly can’t remember what it’s like to not hurt, even though I know I’ve had some decent days in the past.

Most days I wake up, take stock of what’s aching, decide it’s an acceptable level of pain and then get up and go anyway. I’ve done that for many years now. It’s how I managed to hold down a full-time job for so long. But some days the pain isn’t just an ache.

Sometimes the pain is like last night, a hot throb throughout my entire body, sort of like a giant toothache. I sleep for about 29 or 30 minutes, wake up wrapped in pain, deal with the agony for about 2 hours and then doze back off again, mainly out of sheer exhaustion. I’ve had this pain pattern on and off for years. I’ve always assumed, since the naps are almost always to the exact minute, that this pain has something to do with my sleep cycle.

Then there’s the pain like I’m having today. It’s a weird buzzing, like I’ve got static electricity running throughout my entire body. It’s not the big jolts like you get when someone’s just crossed the carpet in the middle of winter and then touched a doorknob. This version of pain is non-stop -– a constant buzz that is aggravated by anything that touches me. This is the day when it hurts to wear clothes, so I sit around in frumpy cotton stuff. I don’t care what it looks like. All I know is that there are times when soft cotton is the only thing that prevents me from slaughtering quite a bit of the human race.

There are sharp pains, shooting pains, even short and long pains. There’s just pain, and there are times when it’s easy to get lost in it. I want to just curl up in bed and cry it away, but crying doesn’t work. I want a hug of comfort, but hugs hurt. The pain never goes away, so I have to find ways to cope.

I try not to give in to the pain often. There are times when I do, when I just stay wrapped in my blankie, cocooned in my soft bed. Then there are times when I challenge myself. “Let’s see how long it takes to get to the bathroom.”

Hey that wasn’t so bad! Now, let’s see what I have to do to fix some breakfast. I bet I can do it. I just have to pace myself. I try not to think about the entire day, the week, or anything even close to that. I just focus on the next task at hand. It doesn’t seem so daunting then.

I also think of those that have it worse than I do. Yes, I hurt. Yes, I’m exhausted. Yes, I can’t even remember where my socks are, but I’m alive, I have a roof over my head, and my sons are healthy and doing well. I could have it worse, much worse.

Plus, there are a few things in this world that never fail to bring a smile to my face. My sons are one. I love those boys. The Hounds of Hell, heck, even when they’re aggravating the daylights out of me, can usually make me smile. Titan and his pitiful ears – just picture Jar Jar Binks. Lil Bit and her bursts of furious energy, she runs around squeaking her toys and having the time of her life. The sound of a baby’s laughter – how can you not smile at that? Kittens at play and National Lampoon’s Christmas Vacation, they both make me laugh as well. I guess it’s a just a question of changing my perspective on bad days.

It’s difficult to make plans with friends. I can’t schedule my days. They’re affected by everything – the weather, whether or not I take my meds on time, my attitude, you name it. I always want to do things with friends, but sometimes I hurt. Sometimes I’m exhausted and can’t stay awake. Sometimes it’s other cruel tricks my body plays. Today, I couldn’t focus my eyes. I was forced to squint at everything, and that ends up causing a headache. Sometimes it’s my balance, and I stay close to home, so I’m not out falling in public. It’s bad enough to fall and get hurt, but it’s humiliating to stumble in public like you’re drunk and then fall flat on your face in front of people.

Some friends understand if I cancel at the last minute. Others don’t and stop coming around. Fibromyalgia certainly does teach you who your true friends are.

I try to get out and about on my good days. There’s usually quite a bit that needs to be taken care of, so I pace myself – do what I can, rest, do a bit more, rest, etc. I just have to remember not to overdo because that will bring on a flare, and flares aren’t good. Nope, not good at all. That’s when everything goes on hold.

Fibromyalgia interrupts my life. I just have to remember to not let it stop it. Sometimes I have to remember to live.