It's that moment many people dread -- the alarm clock going off in the morning. I reach over and immediately turn it off. I don't ever hit the snooze button because that would mean I plan to "snooze," and that's a joke. I've forgotten what snoozing feels like... that peaceful, dreamy state of mind as you feel your body drift off into a sound sleep.
I perpetually fight the urge to call out sick to work more often than I care to admit. It's mostly because I know once I'm awake, the first thing I'll have to do is take a shower, blow-dry my hair, and get ready. To any average, healthy person this is probably a typical part of their day they look forward to, but for me it's like stepping inside a blazing fire. "Heat" is not my friend, and it makes my skin painfully bright red.
I chuckle when I think about the fact that I live much of my life in the darkness like vampires you've seen in movies. Well, I guess that depends on which vampire generation you'd imagine me in. I certainly don't sparkle in the radiant sunshine like Edward Cullen in Twilight. Nope! I can't tolerate direct sunlight at all. It makes me feel like I'm literally burning alive into a pile of ashes.
I have Erythromelalgia (EM), and although I'm suffering horribly, I REFUSE to let chronic pain control my life. I also try my best to keep a sense of humor.
I go to work every day because I want my body to know that my willpower is stronger. I am a warrior. I'd rather keep my mind busy with work, and off my pain as much as possible. That's not easy to do on days when I'm feeling like the Human Torch. It would be too easy for me to forget the shower, comb my hair back into a ponytail, and throw on a dismal-colored outfit for work. But what would that be achieving? I think it would fuel more ammo into the negative feelings over my disease. So, I push through the agony of getting ready daily because I want to feel like an average person even though I'm not. I'm 1.3 in 100,000, but that's okay. I wear bright, cheerful colors because they exude the happiness of a rainbow when I see my reflection in the mirror. Every little bit of "anything" helps.
I sit at my desk enduring scorching flare-ups throughout the day, and it sucks. But life is going to continue with or without me. My chronic illness has a piece of me, but not all of me. I'd rather try to have a positive outlook. So, I've rigged my cubicle to accommodate my disease. I have a portable fan (of course, that's a given), and I keep a pillow on top of my trashcan that fits under my desk. I use it to prop my feet up. Elevation helps relieve my burning feet sometimes. Last resort, I will go into the bathroom and sprinkle cold water on my hands and/or feet, whichever are flaring.
I try to view my disease as: "I'm sharing my life with chronic pain," vice "My life with chronic pain."
To learn more about EM, please see my Burning for Hope blog: