So here we are again. Just me, my bed, and my pain. Oh, and about a metric ton of pain killers.
Who knows what’s caused it this time? Maybe I overexerted myself walking up that flight of stairs, or possibly I sneezed too aggressively. (You’ll have to excuse the sarcasm; it’s a coping mechanism.) Either way, I woke up around 4am feeling like a truck ran over me, went ‘hmm I wonder what that was’, backed up, and ran over me again. And that I have surgically implanted corkscrews in each of my shoulder blades twisting up the muscles nice and tight. Metaphors aside, I think the best way to describe this pain is with a simple “ouch”. Or maybe some prolonged groaning.
I was supposed to work today. I say ‘work’ but really, it’s more fun than that. I am a caregiver to a family friend with disability (ironic, right?) so when we’re together, we mostly just hang out, watch movies, bake cookies, or get our nails done. We try to do things that are entertaining and enriching, teaching life skills while having fun, but today it just wasn’t happening. When I got up around 4 this morning to see if stretching would help the pain and immediately got stuck on the floor, I realized today I had to call it in. Sending a text message to your boss calling in sick is never an easy thing to do. Sending that text message at an ungodly hour while praying that your fingers cooperate long enough to type and not drop the phone on my face again, is more so.
This summer I had the privilege to work as Artistic Director for a Music and Theatre Camp, my fourth year at camp and my second year in the position. I went into the job with accommodations in place to avoid as many bad pain days as possible, and to help when the inevitable fibro flares reared. I was wary about my body’s ability to keep up, as last summer I had thrown out my back by deigning to tie my shoelaces, but with the accommodations in place, I was confident I had the support I needed.
That didn’t make actually utilizing the accommodations any easier.
My first pain flare happened on opening day of second session. By that point we had already been on the mountain for a few weeks so it’s reasonable to assume everyone was a bit tired. But we had just come back from a 24hr break, and no one else needed to sit down as often as I did. No one else had to remain seated during the reading of the Gospel at All Camp Worship. No one else struggled to remember the names of returning campers through a haze of brain fog. Nope. Just me.
Throughout the rest of the summer, I took advantage of the accommodations made for me and rested when I needed to, even opting out of a particularly active Evening Program. I did it, but it wasn’t easy. There’s always a voice in your head saying, “push through” or “rally” or “you’re not doing your job” and it’s especially difficult when you have to sit out from something you really would like to do.
At camp we have a game called King Ball. It’s like Capture the Flag on crack, and it’s one of my all time favorite games, despite the numerous injuries it’s caused. (Hey, if those kids catch the ball with their face, it’s still a point, right?) I love King Ball. My body does not. So the decision was made that I would sit out with the injured campers (no one said camp was without accidents) and lead the group in seated games, and cheer on the teams playing. Someone had to do it, and here I was, readymade for the job. At least I was still able to participate in some way.
Later that session I had to sit out another evening program, but this time I couldn’t just be on the sidelines. I was advised (lovingly told) by my boss to take an early night. Shower and go to bed. It was what I needed. But was it what I wanted? Of course not.
This summer I learned a really important, if not difficult, lesson. You can’t push through a chronic illness. You just can’t. Sounds obvious, and on some level we all know it, but I’ve ignored it for a while.
You feel guilty when you have a disability. You feel like you’re letting people down, like you’re not doing your job correctly, like you’re a burden. So, you push through. You tell yourself that pushing through will keep others from having to pick up your slack, but in reality, it just adds more work for them later on. Sure, my friends and fellow counselors wouldn’t have to have an extra adult around in case I needed to step out, but the next day, after ‘pushing through’? They’d have to do my job all day because I would be too wiped from ‘pushing through’ the day before. Was I really helping anyone? Was I really adding to the camp community? Nope. And on top of that, I was pushing my body, adding stress, and overall doing more harm than good.
It’s not easy to step out, to allow yourself to say “look, I need this break”. But it’s necessary. For everyone’s wellbeing.
Today I am trying to remind myself of this. Yes, I missed work today, but it was necessary. I am not a burden for doing what I must for my own health. Staying in bed all day, as nice as it sounds and as awful as it actually is, is what I needed to do. So I’m doing it.
For my fellow spoonies who are still stuck in that never-ending inner monologue of Not Good Enough, know that you are more than enough. Your value as a human being is not reliant on your output to society. You do not need to be ‘useful’ to be loved and cherished, or ‘capable’ to be worthy. You are enough, exactly as you are.