Spoonies and Chronic Pain
Before I was diagnosed with stage IV metastatic breast cancer, I was a pretty judgy person when it came to health. Really judgy. Some of that is because I didn't understand it and didn't have people around me who were chronically ill. I vividly remember a woman in one of my college classes talking about having accommodations for test-taking since her fibromyalgia prevented her from sitting for a long time. I didn't get it. She looked fine to me.
Cancer has taught me a different level of empathy
I sailed through my lumpectomy in April 2017, the port placement and went into chemo (adriamycin and cytoxin) with an unrealistic view of how I would handle it. After my first dose on a Friday, I rested all weekend and then tried to go to work that Tuesday. I literally couldn't. I was physically unable to move and I had such brain fog that I couldn't think straight and had an insane migraine.
Not how I was planning to handle chemo
That didn't fit into my rubric. That wasn't how I was going to handle chemo. No amount of self-talk or flagellation or gumption could overcome the bone-deep weariness and feeling of being frozen. Nothing could overcome the effects of that migraine, none of the tricks I'd spent decades perfecting.
Treatment wiped me out
When I thought I might have a handle on it, when we thought we might have tweaked the medication to make me more independent, we found out that I'd been stage IV from the beginning and I was no longer mobile since I'd had surgery to put titanium rods inside my femurs. Nope, didn't have a handle on that.
Pain from metastatic breast cancer affects everything
Now, nearly two years after all of that initial treatment, I'm still not used this "new normal," whatever the hell that's supposed to mean. I've never been into self-help type stuff and some of the terms in #CancerLand feel very disingenuous to me. Calling the shit we have to deal with regularly our "journey" or talking about having to adjust to a "new normal" feels like the equivalent to putting lipstick on a pig or throwing a blanket over horse poop.
Being sick really sucks.
Being in pain sucks a lot.
Being in pain ALL.THE.TIME is awful.
Pain literally sucks the joy out of everything. Pain means that everything is affected. Pain means that I pay for the activity when I can muster up the energy. Pain means that after a busy day, I fall into bed and likely stay there for a day or so. Pain clouds the mind and steals the luster of the ordinary.
A new understanding
Pain, especially chronic pain, is a life-changer. I didn't understand why people who dealt with pain were often grumpy. I get it now. I didn't understand why people canceled plans because of being in pain. I get it now. I didn't understand how people in pain could crave pain medication and just count the minutes, the seconds until their next dose. I get it now.
I've had to adjust my perspective on who I am, accept help when that makes me feel worthless, and I have to cancel plans, a lot.
The adjustment was pretty incomprehensible to me at first and then I read about the spoon theory. You can read more about this theory here. Having something concrete like spoons to think about has been very helpful for me. I started not feeling bad about telling the people around me that I simply ran out of spoons. Mentally and physically.
And it was freeing.
I'm doing better at being kind to myself when I've run out of spoons. My kiddos spend a lot more time cuddling with me than running around. I favor places where the kiddos can play and I can sit. The handicapped sticker on my minivan means I can park close to the door and won't run the risk of not being able to run after my kids if they break away from me in the parking lot. We're adjusting.
And there goes another spoon...
Caregivers: Do you practice self-care?