All posts by Savvy Spoonie

I am an artist, writer, jeweler, and a Spoonie. Before becoming a Spoonie I was a very busy high achieving attorney and advocate bent on saving the world. Now I'm struggle to redefine my life to fit within my reduced energy level. Some days are better than others. I have fibromyalgia, trigeminal neuralgia, and chronic daily migraine.

A tale of two Mistys.

Once upon a time there was a gregarious and indomitable woman who wanted to save the world. She loved hugely, in extravagant expressions of devotion. She learned everything, quickly, and worked hard to master it all. She learned law, she learned theater, she sang, danced, painted, wrote, and still made time for all the friends and family a person could ever imagine having. She worked full time, raised children, volunteered for charities. She had a huge heart, enormous dreams, and the firm belief that she could conquer it all. She even did all of the with migraines.

Then one day she woke up with this little stabby sensation in her side. It was a cross between a cramp and a charley horse. Painful, but nothing life ending. Then she woke up with it the next day, and the next, and the next. One day the stabby sensation turned into an explosive sensation, as if her abdomen were birthing an Alien. She couldn’t move without pain, she couldn’t lie still without pain. Her entire life became colored by pain.

She stopped being able to work full time. She could not longer be the fun parent. She couldn’t be a good wife or a solid and dependable volunteer. Her life centered around getting through the day and choosing which pathetic shadow of her former self she would try to be that day.

This went on for years, until the doctors removed all the offending organs. While healing, she tried to regain some of her prior vivacity. Instead, she discovered her life again centered around how much she could do in a day. People got tired of hearing her turn them down, people got tired of hearing her complain. She stopped talking. There was nothing new to say anyway how often can person say ‘ouch’?

Then after the surgery the headaches started. Unlike any migraine she had ever had before these came pounding into her brain with the force of the worst hangover ever. Distracting. Debilitating. Untreatable.

So here she is again, this once empowered force of nature having to choose between work, family, friends, causes. On a good day, a low pain day, she can work for a few hours, play with her kids a bit, and cook dinner. More than that and she has to sleep twelve hours that night.

She misses the life she used to have. She misses being the person everyone wanted at a party because she was fun and energetic, as opposed to the pity invite or the forgotten invite. She misses dancing, singing, rock climbing with her kids. She misses feeling as though she can succeed in tackling anything you throw at her. She misses herself.

But this is who she is now. She has to choose how to spend her energy, it is a finite resource. Overuse has devastating consequences. So she is saying goodbye to that former self, to that prior life. Goodbye to the people who can’t or won’t understand that she simply can’t live like that anymore. Goodbye to the dreams of world domination.

She is saying hello to survival. Hello to working within and conquering an invisible illness, one no one runs marathons for, wants to congratulate you on surviving, or even necessarily believes is real. Her future is still bright, it is still meaningful, it’s just a little bit smaller than before.

Swimming through concrete.

That’s what is feels like.  I wake up and getting moving is like swimming through concrete.  Everything hurts.  Especially today.  Today the body that withstood my car being hit by a tow truck with relative aplomb is screaming.  My right shoulder aches whether I move or not, my head pounds and throbs with my heartbeat. My fingers and hands ache. My freaking eyes ache.

Today is a day when I wish I could just give up and sleep forever.

But no. For some unknown reason my family is made up of people who can’t seem to give up, regardless of how tempted they are to do so.  Today I wish I could give up.  Crawl into bed, take too many drugs, sleep forever, pain gone.  It sounds easy.

I can’t do it.

It’s not the children, it’s not my family, it’s not my friends.  When every cell in my body seems to be out to punish me for something I am not thinking thoughts like “everyone will be so sad”.  I can’t give up because something within me tells me to get the hell up.  It’s this inner cheerleader/dominatrix that encourages/beats my spirits into a state where I can get moving about my day.

Some days this inner me is cheerful:  “Get moving! You will feel better! Get out into the sunshine!”  Other days she is just mean: “Get your lazy ass out of bed. So you hurt, boo hoo, you don’t have cancer, you aren’t dying in child birth, you have modern plumbing. Get up or you will pay.” Then she cracks a whip and scares me out of bed.

I suppose this genetic tendency towards survival is a positive thing.  It’s probably why I am writing this post instead of sobbing like a maniac right now.  I am trying to get into the doctor to get more medication for the shoulder and they are booked until tomorrow.  I love how cheerful receptionists are when they basically tell you “I am so sorry your arm feels as though it is on fire, you take care for another 24 hours now ok?” Ugh.

So now I can breathe my way through a day of shoulder fire and headache madness.  I will watch Pride and Prejudice, lose myself in the relatively simply yet desperate life of the Bennett sisters, and pray that time passes quickly.