How am I feeling? Like I’m waiting to find out if I’m going to survive or not. Like in the next couple months I either miraculously notice my pain start to go away or that’s it, game over. I’m out of lives. I’m out of gamer hacks. I’ve tried every door and every code. I gave it all I could but was it even enough to save me?
People who don’t suffer from chronic pain don’t understand how impossible it is to do anything but sit at home. To go out, to socialize, to be away from my ice packs is excruciatingly painful. My friend had a holiday party Friday night. An early evening, fairly chill gathering at her house. Even though I planned on going for weeks, picked out my outfit and found the perfect present for her, I had to tell her I wasn’t up for it. 4 pm came and my energy for the day was on empty. It didn’t matter that I actually really wanted to be there, that there were people there I would have loved to spend time with, it was out of my control. I might have been able to swing it if I wore my ice pack the entire time but that would require more energy into explaining myself. As much as it would be easier to have a sign on my forehead that says “not fully here”, I never want to be that sad story.
I’m no stranger to being misunderstood. I’ve experienced many things in life most people can’t relate to. I’m lucky enough to have found so many friends who support me through these struggles. Who specify “no pressure” when they offer an invitation. Who appreciate whenever I do make the effort to show up, because they know I sacrificed to do so.
While I sit here waiting to find out if a life of freedom is in my future, all I can do is be kind to myself. Show myself the compassion my friends have been generous enough to show me. Forgive myself for saying no or canceling because of my health. Be proud of myself for even making it out during the day. I hate being a burden and it’s unbelievably frustrating to carry baggage I have no control over. We never know what curveballs life will throw us, it is vital to create a community of people that we can trust will have our back through the hard times. Even more importantly, I must remember to have my own back.