One of the biggest worries a Spoonie has is that someone will mistake the Spoonie’s fatigue for laziness. Should the judging party believe fibromyalgia and CFS/ME to be a bunch of hooey, seeing the Spoonie during a bad episode, or flare, of fatigue may just provide the skeptic with a large helping of confirmation bias. I can see that, from the outside, we probably do seem lazy. Dishes aren’t done. The house is a wreck. You don’t always volunteer for things. You haven’t done a single Pinterest project with your preschooler today. You’re laying on the couch, trying to stay awake, yet again.
The funny thing is that there are plenty of times when we Spoonies assess our own situation like Mrs. Judgy-pants, from the outside. We survey our own behavior and the disaster lying around us and think, What is wrong with me? Why can’t I just push through the fatigue and take care of this shit? Maybe I really am just lazy. I had that fight in my head this morning. I was going to go grocery shopping this morning. I really was! I picked out the recipes, made the list, and everything. But as I began getting ready to go, I felt my body begin to fade. I could almost hear the sound of my energy draining, like the sound the tractor beam to the Death Star made when Obi-wan powered it down.
To put it another way for the non-geeks:
Every cell in my body felt as though it were being drained. My body felt heavier and heavier. If you’ve ever carried large buckets of water in each hand, you may know how I was feeling. You’ll just need to also add buckets around your knees, ankles, shoulders, and neck. And don’t forget the irresistible urge to sleep that you must resist.
I began to worry that I was, in reality, just having an urge to be lazy, an excuse to not go to the store. I wondered if I should just suck it up and push through it. Ultimately I decided to save my spoons and try to do some smaller tasks around the house.
This is the balancing act we Spoonies must do all the time. We must balance “doing” and “not doing” for the sake of our spoons, and we must balance “guilt” and a “clear conscience” for the sake of our sanity. Many times my mind has shrieked in frustration because of the things my fatigue has not allowed me to do, things that I used to be able to do. I liken it to someone in physical therapy trying to regain the use of a limb. And then then depression seeps through the cracks and whispers, Maybe you’re just lazy.
I don’t regret my choice to forego the grocery store and avoid risking a spoon deficit. I still needed to be able to take care of Zoë and stay awake through homework, dinner, and bedtime. As much as I hate to admit it, grocery shopping is really hard on me now. And it’s not because I’m lazy; it’s because I’m sick.