Do I Have Enough??
There is this thing called the “Spoon Theory” and until I admitted to living with Fibro, I had NO idea what people were talking about when they would comment on their spoon supply. I often had a dumbfounded look on my face wondering what they were talking about. Spoons? Why do you need spoons? You aren’t eating anything or stirring anything.
But then, my eldest daughter who has Chiari Malformation and lives her life every damn day by the spoon theory gave me the link for the person who wrote the But You Don’t Look Sick article and clarity smacked me upside the head. If you have no idea what I’m talking about, please take the time to click on the link and read this profoundly wise and easy to understand description of how so many people living with an invisible illness manage to make it through their day. It’s not easy, and often times embarrassing. Especially when someone says to you all up in your face “You don’t look sick”.
OK, so I don’t look sick. But my body tells a different story. There are days I literally fight to get out of bed. Everything from the top of my head, including my hair, to the bottom of my feet and EVERY damn thing in between hurts so badly, just turning over in the bed makes me cry. I have days where my clothes irritate me and have had to change 3 or 4 times to try and find something that doesn’t hurt. Yes, even wearing an oversized loose, soft, washed many times cotton T-shirt can sometimes be more of a challenge than it should be.
I wear bifocals in order to see. I can’t be without them or I can barely walk to the bathroom from my bed. Seriously. And there are times that even though they are the lightest weight I could find, they still sit heavy on my face and cause headaches. I don’t wear my jewelry anymore unless I’m going out for the day, I’ve taken out all of my piercings except for my nose stud, no rings, no earrings, nothing. I’ve let my hair go gray and I’ve taken my nails off.
The temperature is also a factor on how well I can maneuver through the day. If it’s chilly (I keep the AC set on 75) I don’t have the luxury of putting on a sweater or hoodie. The extra weight of that article of clothing can cause added distress. I’ve lost count of the number of times I’ve taken a shower or bath in the middle of the day just to warm up. If it’s warmer, I’m pretty much living in loose flowing skirts and tops. My poor feet look like they haven’t seen a pedicure chair in years, it’s only been one year. But again, even the light hand massage on my feet and lower legs would probably send me through the roof.
However, I refuse to be crippled. I am a firm believer in mind power and I demand function out of my body. I won’t give into the pain and distress until I absolutely have to. I have a 4-year-old granddaughter I look after while Mommy works. And while I cannot get down on the floor and play with her there, she’s accepted the fact that Abi needs to sit on the sofa or paint and play board games at the dining room table. We walk to the mailbox every day and take the dogs out in the backyard multiple times throughout the course of the day. When the weather is warm, and mostly on the weekends or days when Jimmy is home we also spend time in the pool. Again, the temperature is a deciding factor for me, one time in the water I felt was too cold and then hours of trying to warm up was enough to make me more cautious.
The most irritating part of living with Fibromyalgia for me is the brain fog. I can be having a conversation and completely lose track of what I had been saying or not understand the other person’s response. I only drive myself on “good days”, because at home and not even in the car, I’ve found I can easily get lost or turned around and have to stop and wait until the fog has cleared enough to go on. It takes a while to do the simplest of tasks on days like that, all kidding aside, just try cooking something when you can’t remember what you are supposed to be doing. Thank the Gods my Fibro fog days are few and far between. At least for now.
Having said all this, I have found ways to thwart some of the more serious challenges I had been facing. It’s been just about 7 weeks (not counting the weekend I was physically sick with a cold or whatever it was) since I’ve had a flare and had to spend an entire day or two in my bed. My pain level is manageable and my mobility has increased. Next week I’ll tell you all about my experience with Thrive.