Savvy Spoonie

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.

Sometimes you get them from the universe, some times from family and friends. Today’s post is a thank for to a few people who picked me up this week.

I want to thank Christine at the Ameristar Casino in Blackhawk who gave me a glorious upgrade to a dream room with a fire place and huge jetted tub. You did it for no other reason than to be nice and it made our day.

Michael, despite having wee ones to care for, you have started sending me a note every morning telling me you hope I can have a good day. Finding that note in my message box makes me smile and lifts my spirits enough to make the first part of the day easier.

Mom, Dan than you for sending me the message that you will help me get around where I need to go until I can drive, that I am not trapped at home, and that there are people who will go to considerable lengths to help me do what I need and want to do.

Lee, thank you for sending the message that despite all we have been through, you still think I can survive and thrive through this. Also, thank you for talking to your hysterical ex-wife for half an hour when you had far more fun things to do with that time.

I want to thank the tow truck driver who hit my car. You may have helped my doctors diagnose some of the headaches that have been plaguing me. You were decent to me when you ran the red, handled everything well on your end, and may have inadvertently led my medical professionals in a new direction.

My dear doctor friend, thank you for consistently showing you care about my health, for referring me to someone you will likely do a better job listening and helping me through this.

To my Coni, there are millions of messages you have sent me over the years but the one that sticks now is that you really can find a way through anything with enough wacky humor.

To my dear Woman with a Hatchet, thank you for showing me how to continue pushing through. I know you are struggling, but you are setting an example for me to follow.

Happy Wednesday all, I love you.

I have lived with headaches since I was 12. I learned how to manage them, push them to the background, concentrate on learning and living anyway because it became very clear early on that I didn’t really have a choice. If I was going to live, it would be with headaches.

These headaches are different. They have no warning, they come out of nowhere, and they hit me in the face with such force that I can’t use any of my breathing or personal management techniques. All I can do is curl up, shake, and cry.

I’m afraid to go anywhere alone. I was grocery shopping the other day when one hit and I had only enough time to check out in the miraculously empty line with only two of the dozens of items I was there to purchase. Then I left the store and stumbled the block and half home in tears, swaying like a drunk woman. When I got home I just curled up in a ball in my mom’s lap and sobbed until the headache went away.

It took over twenty minutes. Twenty minutes of such intense pain felt like a lifetime. There wasn’t anything I could do, nothing I could take. I just had to lie there curled up like an animal, reacting like an animal. When it was over I was exhausted, horrified, embarrassed, scared. Also hugely grateful that I live with my mother, because really no one else’s lap would have done.

I don’t know how to live like this. I don’t know what kind of life to build. Is it safe to drive my children anywhere if one of these headaches can strike with no warning at any time? Is it safe to go anywhere with them alone? What kind of emotional turmoil will I put them through when they are alone with me the first time this happens? The second. How about when this becomes normal for mommy? When it’s just “Oh look, everything in our lives has to stop because Mommy has another one of her headaches.”

This is not how I imagined my life would be. Ever. I don’t know where to go from here. I have been trying not to cry for three days. I am a complete loss. Sometimes I wish I could jump off a bridge, start a fight with a mama bear, go skydiving without a parachute. I know it wouldn’t be easier for kids, or my family, or my friends, but let’s face it, it might just be a fuck-ton easier for me. So much easier that I sometimes wish I could forget about my children, my family, my friends. So much easier that I sometimes dream that I get murdered and wake up relieved.

I won’t jump off a bridge, go skydiving without a parachute, or try to get murdered (though how one tries to get murdered is a little beyond me). I learned long ago that apparently giving up just isn’t within me. Also, the sunniest parts of my life are the little arms around my neck, the kisses on my cheeks, even the notes they leave me saying “I’m sorry you don’t feel well mommy, I love you.” Although those notes are a double edged sword, because God why can’t the notes read “Thanks for being Super Woman mommy, you rock!”. I don’t want to be the mom who teaches her children to care for sick people, because she is always sick herself. I don’t want to be the mom who knows that she is going to let them down again and again and there is nothing she can do to stop it. I want to be the mom that somehow manages to make a cake shaped like a teenage mutant ninja turtle, sew ninja turtle costumes for all the guests, and throw a party with a volunteer dressed as Shredder for the kids to defeat. I want to be the mommy who can volunteer to supervise her daughter’s first boy/girl dance, and can join in taking a martial arts class with her so when that boy gets a little to handsy she can deck him one.

Right now I can’t see a future where I am able to do any of those things. Right now I see a future where my body, despite my own determination and will, just breaks me without warning any damn time it wants to.

What do I do?