Hugs hurt. I don’t want to say that they do but it’s true. An arm around my side, the pressure on my body, sends thousands of tiny needles to the surface, attacking my skin. But I want the embrace; I need to feel loved, so I welcome it, trying not to wince.
I live with Chronic Illness in the form of Fibromyalgia. A disease most people, including the doctors that diagnose it, don’t believe exists. It’s just a figment of my overactive imagination as if I would choose to bring this constant symphony of terrors upon myself.
They pump me with pills. Tiny lumps of powder that change the chemistry of my brain and bring with it side effects that need their own remediation to sort them out. Effects of, mood changes, headaches, stomach issues, insomnia, and all the while providing no relief. I swing from back and forth through opposites of mood. There’s nothing worse than going from laughter to tears all while sitting on the toilet.
I throw them out. Deciding that it’s better to go it alone, sometimes the cure is worse than the disease. But it’s not a cure; it’s a band-aid that doesn’t adhere all too well and keeps falling off. Instead of replacing it, with a similar ill-functioning piece of latex, you must throw it out. I go back to the things that I know will help, baths, massage, dietary changes, and exercise because sometimes the devil you know is better than the devil you don’t.
On my worst days, I hideaway. I try not to do too much because I’ve learned, via the hard and traveled road of the stubborn, that doing too much makes things much worse. Inexplicably worse. I tend to fall. Just randomly, my legs, working one minute, one foot in front of the other, and then nothing. I collapse into a heap of battered and bruised body parts upon the floor.
My children saw me fall once. I was walking along, doing the laundry, and then I wasn’t. Clothing was everywhere, and I laid bleeding on top of them. That was the day their perception of me changed. They always knew that I would get sick sometimes, I was a little more worn out than most mothers they knew, but I was still invincible. I was Mom, the person who is supposed to be able to lift cars off children pinned underneath. That day, I became fragile, a piece of porcelain with hairline cracks ready to disintegrate in their hands at any moment. And I hated it.
It’s 4 am, and I’m wide awake. My body is desperate to end the nightly struggle that is the give and take of exhaustion and pain. I get up, promising myself to take a nap later, a nap that I know will never come. I’ll suffer through this day in the same way that I have suffered through all the others since this dance began. I have to take it one moment, one task, at a time until the cycle ends, and I return to my new normal. The days where my pain doesn’t get in the way of everyday life. The days where I can function without having to check and make sure that I’m wearing the mask of normalcy. The days where the pain is a side note to an otherwise happy life.