Well, it’s Friday! I made it! Last week was a debacle with the whole “small bowel obstruction/emergency room/miss 3 days of work thing”, and when this past Sunday rolled around, I knew that the upcoming week was going to be a crazy one. And I knew that by the end of the week, I’d be out of spoons.
How did I know? 30 years of chronic illness and you get to know your limits pretty well. So I knew that between a late night of Cavs basketball on Sunday, a late night of Cavs basketball on Tuesday, a comedy show on Wednesday night, a social event on Thursday night followed by more Cavs basketball, learning a new software and a deadline at work, being a wife, mom, daughter, friend, neighbor, advocate, …. Well, let’s just say that I went WAY OVER BUDGET with the spoons I knew I had to work with. Am I’m paying for it.
My skin is flaring – bad. It hurts to walk, it hurts to sit, it hurts to EXIST. I’m heading to the doctors office within the hour to get steroid injections in unmentionable places, all in the name of trying to function this weekend. I’m exhausted. Humira makes me SO TIRED. Not just “sleepy, want to doze off at my desk tired”, but “trying to walk underwater with toddlers tied to my calves tired”.
So I sit here, trying to decide if this is my fault, or if I’d still feel this way, even if I’d gotten 8 solid hours of sleep every night and had no stress to deal with this week. AND I JUST DON’T KNOW. That’s where the guilt kicks in.
Because I know when I get home today, the house needs cleaned, bills need paid, the diva child needs tending, the husband wants attention (and has had a rough week of his own and surely doesn’t want to pick up the slack since I don’t feel well), the mom and the grandma haven’t heard from me and want to know what’s up, the best friend will ask what I’m doing tomorrow night, the blog needs posting and just AHHHHHHH! These are all normal things. Good things. Things I’m incredibly blessed to have in my life. But, I. Just. Can’t. And maybe it’s my own fault. And I feel bad.
All those nights of basketball – I didn’t HAVE to stay up. But I wanted to. For a Clevelander, this is history making stuff. I don’t want to miss out on water cooler office talk, fun social media memes, high fives in my living room. You get it. The comedy show – I could have stayed home. But I didn’t want to. I’ve loved Dave Chappelle fo’ever! This also was a maybe once in a lifetime opportunity. The social event – HAD to go. Missing was not an option. And the rest of the stuff. Well, it’s my family, my career, and my passion. Again, I had to.
I hate feeling like I must choose between things I HAVE to do, and things I WANT to do. Most almost 40 year old women don’t have this issue. And the sucky part is that up until a couple years ago, I didn’t have that issue either. For someone with a “chronic” illness, I was for all intents and purposes, healthy. But then my body decided to wage war again, and it hasn’t let up since. And I’m trying SO DAMN HARD to fight back, to take ground, to win some battles. I’ve had a few victories, but I feel like I’m losing ground. I’m stubborn, and I refuse to concede to my body. So I struggle. I put on my smile, pop some meds, get some injections, move slow as molasses and keep putting one foot in front of the other.
But there’s a trail of spoons behind me, and I’m desperately scanning the horizon for the next spoon oasis. I’m running short…