1. It’s not the same every day. Some days my pain is so low that I forget it exists for part of the day. I’m active and engaged with other people, looking to the future, and not revolving my life around rest and appointments. Other days I have no idea what a pain-free life would look like and I can’t get out of bed long enough to think about it.
2. It really does co-exist with depression. I’ve always hated the depression-chronic pain connection mentioned in every piece of literature about chronic pain, having felt that it somehow reduces the awfulness of the physical pain. But it’s impossible to lose the ability to do everything you enjoy without getting depressed. How do you get out of depression when you can’t go for a walk, can’t relate to others, and have no appetite for food you used to love? I don’t know. The physical pain has to go down for the brain to begin recovery.
3. Some doctors suck, and a few are awesome. I know there are some amazing doctors around but for the most part, they do a poor job of dealing with chronic nonsense. My family doctor ranges from ‘suck it up’ to ‘that sounds awful’ with little in the way of actual help. I have to pick what I complain about in order to get what I need, and that gets harder the longer it drags on.
4. When my life is busy with appointments, I can’t do any more small talk. Between physio, the lab, the x-ray, and doctors, I have no ability to small talk with a cashier or the other parents picking up their kids. It’s not like this all the time, but any time I have two or more appointments in a week, I’m unable to socialize. I hate that I can make people feel like I don’t want to talk to them when I really do.
5. Pain can make you selfish. Not on purpose of course, but when your brain is busy trying to make it up the stairs without falling, it’s impossible to think about making cookies for the kids or helping your spouse deal with difficulties at work.
6. Kids are awesome. My teens are a huge help by bringing in groceries, bringing me ice or water, or whatever I need when I’m too tired to get up. They will gladly help with chores in the morning so that I’ll have the energy to do something fun with them in the afternoon. They don’t pretend to know how to ‘fix’ me. It’s my job to make sure they become more and more independent so they can create a great life that doesn’t revolve around me.
7. “What would you give your pain out of 10?” makes me bat-shit crazy. Don’t ask me to rate my pain on a stupid scale and don’t pretend if it’s less today than last week that it’s because of you. I overheard another patient last week tear a strip off her physiotherapist when asked that question. We all hate it. Pain sucks, all the time. A smart doctor or physio can tell by how you react to movement how much pain you’re in.
8. TV is awesome. Chronic pain can suck your brains out as well as your body, leaving you unable to read, write, or do anything creative or meaningful. I’ve had periods of weeks at a time where showering is the most I can do in a day. TV saves me from going insane, especially if it’s watching Brooklyn Nine-Nine or Parks and Recreation with my kids. We have to laugh.
9. If there is a silver lining, it’s that I’ve learned that my time and energy are my most important commodities. Yes, I miss running. Yes, I miss my career. Yes, yes, yes. No, I don’t like having a nap almost every day. But if I spend time with you, know you must be very important to me.
10. It doesn’t get better with time. Being sick, in pain, having surgery, or being in the hospital get continuously harder to deal with. “I could never deal with that” or “I don’t know how you do it” is never helpful. I don’t have a choice but to deal with it, yet I’m grateful for every day I get to be on this fabulous planet of ours. Every day I know it could be worse and every day I’m glad that it isn’t.
These are my ten, I’d love to hear yours!