I said something tonight I bet people all over America say routinely on Sunday nights. I said, “I’m not ready to Monday tomorrow.” It’s a quirky statement usually meant to imply the weekend needed more hours to do all the fun things people love about weekends, not working, sleeping in, staying in comfortable clothes, being with family, or going places you aren’t able to go when you are obligated to be at work.
What did I mean tonight? My pain all weekend has been absolutely excessive. When I say excessive–I mean, normal people would absolutely not go to work, describe it as a 9.5 on the pain scale, use every tool in the pain toolbox kind of pain. I mean, I literally do not know if my body is going to wake up at all prepared to handle the things I need to do tomorrow.
When I woke up in immense pain today, it was okay. I could stay in bed longer. I could keep the same clothes on longer. I could get a hot bath at 10am while my husband walked the dogs and eat leftovers for lunch, just enough I wouldn’t get sick from the pain meds I needed today. When the pain got worse this afternoon, I could curl up with my dogs on the couch and binge watch something on Netflix while eating a Blow Pop because hard candy calms my nausea. I could relax while my husband cooked dinner even though I prefer to cook for him, because he knew I was in too much pain to cook.
Tomorrow, Monday, if I wake up in immense pain–an alarm is going to go off. I might be lucky enough to hit snooze, but I need to make a 90 minute drive tomorrow, which means putting pressure on my spine, the part of my body that causes me the most discomfort. I’ll have to put on nice clothes and enough makeup that hopefully customers who see me can’t tell I’m in pain, even though I’ll have to use my wheelchair. They’ll probably ask about it–I’ll have to resist the temptation to respond with sarcasm, because truthfully when you’re in immense pain, it’s VERY hard to stay in a good mood–or not be frustrated with able-bodied people who aren’t sharing in that pain.
Here’s the thing, though. I’ll do it, because I do it all the time. If you don’t have EDS or a chronic pain condition, you probably can’t even fathom this. If you do, you aren’t surprised by this. You do the same thing all the time. It’s less of a “look better, feel better” concept and more of a “fake it til you make it” reality, because if we stayed in bed every day our pain rose above a 5 on the pain scale, most of us would have bedsores.
I’m working on being aware of how my pain affects my mood. I’m working on how to make my pain better. It’s hard when you have tried as much as I have. It’s harder when you think about those 25 years a doctor didn’t tell you what was wrong and all the damage you could have prevented. It’s challenging not to wonder if dreading morning alarms would happen less often if we had known when I was in kindergarten instead of when I was old enough to teach it.
So, my friends, if you’re reading this and you’re worried about whether or not you’re ready to Monday–or if your body can even handle Monday, you are and it can. You are so, so strong. No matter what it takes to get through the day, whether that’s taking an extra five seconds before responding to a question or promising yourself a hot bath after the day, you will get through it, because we always do.