Even after sleepless nights, I still get up and (barring the minor accommodations I must make to not be in pain), I go about my day with as much normalcy as I can manage, because I want my body to know that my willpower is stronger than the disease that has decided to attack it. It doesn’t make me a warrior to do this. It makes me a single mother of 7 yr old twin boys who deserve more than to watch me give up on both them and myself. It’s not easy to do on days when I’m feeling like a Human Torch, but I still try the best I can.
In an effort to not fuel more ammo into the negative feelings I have over my disease, I try to find some bit of humor in it, even if it’s warped and a little bit twisted. I have to find ways to chuckle at something that in every way really just sucks all of the time.
Because my biggest daily obstacle at this point is direct sunlight, I find the humor in thinking “damn, if I had to turn into a vampire, at least I should have gotten one of the good things about it. Not the whole sun burning my skin thing.” I know that as the disease progresses, I will come to live much of my life in darkness like the vampires in the old movies did, coming out only at night. Edward Cullen in Twilight had it easy. He could stand in bright sunlight and sparkle. If I tried that, I’d literally feel like I was on fire and going to turn into a pile of ashes.
Life is going to continue on, with or without me, and I’m going to be a part of it until I literally can no longer. My chronic illness has a piece of me, but it does not have all of me. This is my way of fighting back, just a tiny bit.