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.
My hardest learned lesson has been patience. Having a body that attacks itself in a myriad of ways means being patient with yourself. Getting here is a journey that I am still on.
Most of the time I am patient with my usual limitations. Usually I can be kind, find things to be grateful for, prioritize my family and manage to contribute sometime to the running of the house.
I still struggle with finding patience when I have additional challenges, such as a concussion caused by a slip on black ice two weeks ago and a head cold.
When things add up and my body begins to feel like an all over plague area I start to lose my patience. I get cranky with myself for not being able to do enough. I lie in bed and stare about my room and rearrange it a million times in my mind. I read a book and discard it mid-chapter because it’s not the right book. I start a play a game or watch a show and they don’t help distract. I get impatient and restless and increasingly miserable the longer my physically forced rest continues.
I feel like Meg is Little Women cutting up all her dresses to redo them “á la Moffat”, destroying perfectly good things because I am feeling a sense of malaise.
I do have things to be grateful for and I try to count my blessings. I fear in times of difficulty my inner child is too full of the “unfairs” to really hear the counting.
Basically, I’m currently a whiny woman-child and a hot mess.
Despite the otherwise generous nature of our home planet she has very little give, especially when you are testing that give with the back of your head having encountered black ice on your walk home.
Did you know a concussion is a lot like being way too drunk? I now do. I had the “Why did I drink THAT many margaritas?” spins for three days. Now I just have the “Am I really feeling the Earth move?” dizzies.
Totally a word, dizzies. Promise.
Don’t believe me though, I’m concussed. My brain is compromised.
Where was I?… Oh right, don’t hit the Earth with your head. Or anything really, don’t hit the Earth. Why would you do that? It’s mean! The Earth was just trying to help!
Damn it. I did it again.
Boy I hope my holiday Amazon Handmade listings aren’t this … creative.
One of the things that truly sucks about Fibromyalgia is that you are going along your life in a generally halfway decent state of activity and stout denial and then BLAMMO you can’t do anything.
Today I woke up and I was winded going downstairs. Making coffee was too hard for me to do. I tried to assemble a new catbox cover and opening one side of the box wore me out.
I spent the first 5 hours of the day lying on my bed in my pajamas listening to a book on tape because it was all I had the energy to do. Even now, writing this, my fingers are aching and my hands hurt and I am getting freaking winded from typing.
I don’t know when I will wake up again and have the energy to go to the gym or walk the dog or even bathe. Worst of all, right now, it’s even hard to breathe. My chest muscles and the nerves in my chest seem to believe that lifting my lungs up and down is a little too much for them to handle. I’m gasping sitting still and dizzy going downstairs.
Two days ago I walked 3.5 miles with the dogs happily and without getting winded. Yesterday I swam for 45 minutes and though I could feel the weakness settling into my arms I could still use them. Today I am a twisted, broken, incapable thing.
This disease sucks. A lot.
Managing life with chronic illness requires savvy spoons