Blog Archives
This Day doesn’t belong to This Pain
You have every right to say that your days are bad from diagnosis onward. Pain roars and screams and spreads and bites down. It truly touches every part of our lives, and tries to destroy all that it touches.
But you are not your body. You are more than flesh and bone.
You have the power to tell your story the way you want it heard.
You don’t have to choose whether your days are black or white, either good or bad. This isn’t a multiple choice test between succeeding or failing.
We are all striving to find balance every day, moving forward despite our circumstances, seeking our best selves.
That is a victory.
Party Etiquette for a Sassy Spoonie/ Missed Manners
Living with constant chronic pain or chronic illness is no party, but you may have been invited to a few this holiday season. Here are some ideas and tips to help you make it through the festivities as we approach the new year.

Glamorous Woman | Kim Legler
1. No Cocktails
I know, I know, at your next party, you may be thinking:
“Ughh, why did I come? How do I even get comfortable in this chair? At least I’m not squished on the couch. Did anyone notice that full body spasm? Oh great. And now my hands are shaking. Better put my drink down before I spill it. At least it isn’t red wine. Of course not, because wine is a trigger food and 8 of 10 of my medications don’t party well with alcohol.”
See, isn’t this fiesta turning out to be fun?! But don’t worry about the NO DRINKING POLICY. Your brain fog keeps you so fuzzy and clumsy on a regular basis that you’ll fit right in with your drunk buddies!
2. Polite Conversation
Look at all of those healthy attractive people around you playing ping pong with their witty dialogue. “Hmmm? What? Oh, no that’s not a fashion statement. That’s called a compression sock. Thank you so much for noticing. Yes, those are my favorite shoes…I guess. I know, I always wear them, don’t I? Ha, ha. You are so observant. You know, you should really go bird watching sometime- I hear that is a great hobby for people who enjoy staring.”
See, you can play this game of witt too. What a wonderful party!
3. Smile
When in doubt, smile.
Always keep them guessing. When your pain is on red alert and your brain is on complete shutdown, SMILE!
It tells people that they can relax and have a great time no matter how sick you are. You can always go to the ER later, tonight is for celebrating!
So flash those pearly whites and watch your friends dance, karaoke, tell work-related stories, and get jiggy. They’ll remember you being a sweet, saint-like creature, and little did they know you were just half-conscious from pain. Talk about a party trick!
Nope, parties just aren’t as fun as they used to be. And please don’t go around asking people what I USED to do at parties… (seriously, don’t). But it’s still great to get out and make memories whenever we are able. And when you are not able, know the party won’t be the same without you.
Merry Christmas, happy holidays!
This is one of my favorite pieces I published in 2014. A snarky spin on the old Emily Post / “Miss Manners” columns from the 1950’s.
Spoonie Mario, Level up!
I hope you are leveling up today despite the evil critters coming to get you and attacking your body. Don’t you wish there were some extra mushrooms or flowers around in the chronic illness game?