The Constant Battle

“You may have to fight a battle more than once.”

~Margaret Thatcher

Chronic illness sucks. Actually, let me clarify that: chronic illness SUCKS! When you have a chronic illness that brings pain along for funsies…suffice it to say there aren’t enough expletives available in every language in the known universe. Don’t get me wrong, we all get good days. We get days without pain (ha, just kidding – we get days with manageable pain). We get days where we get to function like semi-normal human beings. Those are usually days when we overdo it in a heady rush to catch up on everything we’ve slacked on during the bad days.

Because the bad days…

Pain takes a big toll on mental health. Not just for people with chronic illness, but anyone. Nerves screaming for your brain’s attention diverts blood flow and resources away from – well, pretty much everything. (I’m not making this up, either. This is genuine science) There’s only so much the brain is capable of handling at one time. When pain demands too much focus, that beautiful machine sacrifices other functions to try to cope with the raw nerves. Guess what that leads to?

The dreaded FOG!

Doesn’t matter how well-educated you are, how fluent your usual vocabulary. You are suddenly reduced to a complete and utter idjit. You lose entire sections of the dictionary. Not just the big words, either. I’ve stared at a table and come up with nothing more than, “flat thingy.” (Oh, yeah, people look at you with respect then!) Sentences trail off to nowhere. Focus? Forget it. Your poor brain doesn’t have time to help you concentrate. You stare at computer screens while clocks tick by, wondering what you’re supposed to be doing. You wander into rooms with no clue why (assuming you remember what the room is in the first place).

And you’re mental health tanks behind it. You KNOW you’re intelligent. You KNOW you’re competent. You KNOW you can write and speak and read at more than a kindergarten level! But you’re sure as hell not demonstrating that fact! So you hide away from friends and family. You avoid speaking aloud lest some brainless phrase escape your lips. You frantically run documents through spellcheck and Grammarly to save yourself from looking stupid. You feel less than a milometer tall.

All from a physical reaction.

Pain is a powerful thing. It really can sabotage your brain that easily. I don’t want to say those of us with chronic illness are used to it, because we’re not. We hate sputtering through our flares. We hate canceling plans to avoid looking like certifiable morons. But we at least know it comes with our diagnoses. Someone experiencing nexus-level pain for the first time? Yeah, no clue what they’re in store for.

Spoon theory works for chronic illness when measuring physical activity. But it fails when we try to account for our mental well-being. How many spoons to speak like an educated person? How many to write a thought-out article? How many to describe a room? How many to understand a Dad joke? Who freaking knows?! It never comes up in all of those cute memes displayed around social media. But it matters. Our mental health and well-being is just as important as our physical capabilities.

Yes, I want to know what I’m going to accomplish each day. (And, yes, I overspend my spoons pretty much every day) But I also want to know how much fog I’m going to cope with. I want to know if I’m going to sound like a moron with a new client. I want to know if I’m going to have a sentence fade out when talking with my fiance’ at the end of the day. I want to know if I’m going to just curl into a ball mid-way. Not just because the pain is getting to me, but because I feel like my brain is failing on me.

How many spoons to feel like a real person again? That’s what I want to know.

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