I want to say I’m a really good person and I remember exactly which Spoonie-who-came-before gave me this advice but I don’t. All I do remember is the advice. Choose a team name for yourself and your caregivers and start referring to efforts to assist during your hard times by that team name.

It was amazing advice.

For us, the advice made it easier for me to ask for help because instead of feeling like a needy sick person who was always asking for something I felt like part of a team and it helped my husband because he was able to help me and feel like part of the solution instead of a helpless bystander.

We chose the team name Friends of Karl for two reasons.
1. The acronym, FOK, sounds like FUCK, which is often what we feel like saying when I get hit badly with symptoms anyway, so it allowed us another avenue to express frustration humorously and usefully,
and
2. because of a sea lion who was making a huge fuss off the coast of Newport, OR while Dan and I ate french fries and drank cider in a restaurant above the sea lion docks. We had been walking and had paused here to watch the sea lions fight over the docks while we rested a bit. It was a grey and rainy day and this sea lion was losing his mind in the middle of the bay while the other sea lions dozed on all the available dozing surfaces around him.
I sipped cider and nibbled a fry. Dan began a conversation.
“GUYS!! There’s water falling from the sky guys!! It’s raining!! We’re getting wet!! Guys!! Can you hear me?!?!?”
“Yes Karl,” He said in a tired groan “We can hear you. We just don’t care. We’re sea lions. We’re always wet. We live in the ocean Dude.”

This impromptu bit of theater started a tradition wherein we voice the stupid outrage of animals named Karl doing obviously ridiculous things whenever we see them. It happens more than you think.

So, as a result, Team Friends of Karl was an obvious choice for my Fibromyalgia Management team name. A little ridiculous, a little irreverent, and a little something to remind us to laugh.

Now when I have a bad day I tell him team FOK needs to be on board. He comes home knowing he needs to cook dinner. We have team FOK protocols, he always leaves me with a full water bottle in the room, for example, in case I have a hard time with the stairs. We feel more together in the fight than we ever have before. It’s been really great. I have more energy to put into my caretaking of him because I am not spending it trying to not bother him with asks, so I can make his lunch for work or do other things that let him know he is loved and cared for too.

It’s been a life improving mechanism.

So, I will be writing more about how I am managing this life of mine now that I inhabit a body that is beyond the help of modern medical science. What do I do to manage symptoms. Where do I go to get help? How do I manage stress, pain, despair, my relationships, kids, etc.

I shall share it all with you.

Hopefully doing so will help someone out there fell a little less alone in their journey with this syndrome that only recently got recognized as something more than a catch all “women’s” thing.

Stay safe loves. See you soon.