Feb. 8, 2015
The Friend who prompted me to start writing this journal inspired me with a positive way of viewing disappointments: “When something goes wrong in your life, just yell, ‘Plot twist!’ and move on.” Excellent advice for people who have normal energy stores. What I’ve come to learn, though, is that Plot Twists take a lot more energy than I ever realized. No one thinks about how much energy each daily activity takes until the energy tank is on empty.
The Friend who prompted me to start writing this journal inspired me with a positive way of viewing disappointments: “When something goes wrong in your life, just yell, ‘Plot twist!’ and move on.” Excellent advice for people who have normal energy stores. What I’ve come to learn, though, is that Plot Twists take a lot more energy than I ever realized. No one thinks about how much energy each daily activity takes until the energy tank is on empty.
When I try to explain to people that I’m not up to doing something, that I can’t do anything late in the day, or that I can’t do anything physically or intellectually strenuous, they either think I’m making excuses or they just don't get that I can't do those things.
I think of it like this: I wake up each morning with a small pocketful of coins; most other people I know start out with a wagonload of coins. When you have more coins than you’ll ever use in a day, you don’t realize how much you spend on every little thing like showering, drying your hair, dressing, fixing breakfast and cleaning up your dishes. Every step, every movement, even every thought process costs a coin or two. When the coins are gone, they’re gone. That’s it. The bank is empty until tomorrow. If you don’t sleep well, you wake up with even fewer coins. When you know you have only a few coins to spend, you plan and budget very carefully. You try to minimize steps and economize all your movements; you have a meltdown when you drop or spill something because you know cleaning up the mess will use up precious coins. Pain is very expensive, so you avoid things that cause it at all costs – for me, that's sitting or standing or doing anything for very long, as well as physical exertion, which results in muscle aches.
Aside from other energy-destitute people, few understand why something as routine as fixing a meal is such an ordeal for me. I don’t like food prep and cooking to begin with, so that’s a coin right off the bat. But consider the process, then imagine doing it after having run a marathon:
- Coming up with a meal idea in the first place - not one dish, a meal
- Making a shopping list
- Going shopping, and in my case, sometimes having to hunt for Paleo ingredients – add Candida diet restrictions, and shopping becomes an exhausting proposition
- Finding a parking space close to the door is a priority, not because I’m lazy, but because I desperately need the energy for the actual shopping
- Hauling said groceries to the car – even more of a chore if I haven’t nabbed that coveted parking space near the door
- Driving home – read: navigating traffic and staying alert while operating heavy machinery
- Hauling said groceries into the house, where they sit on the counter while I drop into a recliner to regroup for a while; then I dig out a few more coins to bribe my brain into doing the puzzle that is moving food in and out of the fridge and pantry
- Getting out ingredients, pots, bowls, utensils, then measuring and mixing everything – always frustrating because my mind has a hard time sorting and keeping things straight. I have never in my life been able to memorize a recipe or even figure out from experience how to put a dish together.
- Cleaning up the mess
- Starting all over again in about three hours (minus the shopping, unless I’ve forgotten an ingredient or two)
Meal prep costs me almost all of my day’s coins, which is
why I don’t make lunch, why dinner is the worst part of my day, and why
make-and-freeze prep for several meals at a time is a great time-saving
solution for those with wagonloads of coins, but for me it simply isn’t
possible.
And that’s just meals! Laundry is a coin or two, cleaning a bathroom is about five coins, having to deal with an insurance claim is a good 10 coins, and doing even small household repairs take a few coins; if they start to pile up, just thinking about tackling them can empty the pocket. Even fun things like going to visit a grandchild or a friend use up almost a day’s worth, so you don’t plan anything else for days with costly activities.
A Plot Twist uses up a lot of coins because you have to figure out how to reroute (brain processing is often more costly than physical movement) and then physically carry out Plan B. Multiple Plot Twists in one day can easily use up all your change and land you in bed, or in a crying heap on the floor.
It’s hard for energy-rich people to comprehend what it feels like when you run out. The closest comparison to which most people can relate is having the flu – the aching joints, the weakness and inability to move much less get out of bed. But as the term implies, Chronic Fatigue never ends. So you constantly budget your energy with as much miserly care as the financially poor budget their money, reluctant to spend on anything unnecessary. But there is no energy overdraft protection. If you’re in the middle of something when it happens, you have to try to keep going on fumes, but it’s not very pretty, and you can’t do it for long. You suddenly get irritable and irrational because your brain won’t work, you drop things and bump into things because your sense of space is off kilter. You feel like you’re melting into the ground, and “melting” is an apt metaphor, because you’ll be acting like the Wicked Witch of the North; at this point, you are quite literally shutting down.
If functioning without energy and brainpower isn't maddening enough, you are misunderstood by strangers and friends alike. They think you're a grouch (and you are but you don't want to be), that you're lazy, that you're a hypochondriac. They begin to avoid you because within moments you can swing from feeling OK and being nice to crashing and acting irrational, snippy and even mean. But no one would know you're crashing because you look fine. Even your friends stop calling because after you decline social invitations several times, they think you can't ever go play, or they decide you're no fun.
I've been writing this post for several days; ironically, today Chronic Fatigue Syndrome is all over the news with the release of a year-long report. Get this:
And that’s just meals! Laundry is a coin or two, cleaning a bathroom is about five coins, having to deal with an insurance claim is a good 10 coins, and doing even small household repairs take a few coins; if they start to pile up, just thinking about tackling them can empty the pocket. Even fun things like going to visit a grandchild or a friend use up almost a day’s worth, so you don’t plan anything else for days with costly activities.
A Plot Twist uses up a lot of coins because you have to figure out how to reroute (brain processing is often more costly than physical movement) and then physically carry out Plan B. Multiple Plot Twists in one day can easily use up all your change and land you in bed, or in a crying heap on the floor.
It’s hard for energy-rich people to comprehend what it feels like when you run out. The closest comparison to which most people can relate is having the flu – the aching joints, the weakness and inability to move much less get out of bed. But as the term implies, Chronic Fatigue never ends. So you constantly budget your energy with as much miserly care as the financially poor budget their money, reluctant to spend on anything unnecessary. But there is no energy overdraft protection. If you’re in the middle of something when it happens, you have to try to keep going on fumes, but it’s not very pretty, and you can’t do it for long. You suddenly get irritable and irrational because your brain won’t work, you drop things and bump into things because your sense of space is off kilter. You feel like you’re melting into the ground, and “melting” is an apt metaphor, because you’ll be acting like the Wicked Witch of the North; at this point, you are quite literally shutting down.
If functioning without energy and brainpower isn't maddening enough, you are misunderstood by strangers and friends alike. They think you're a grouch (and you are but you don't want to be), that you're lazy, that you're a hypochondriac. They begin to avoid you because within moments you can swing from feeling OK and being nice to crashing and acting irrational, snippy and even mean. But no one would know you're crashing because you look fine. Even your friends stop calling because after you decline social invitations several times, they think you can't ever go play, or they decide you're no fun.
I've been writing this post for several days; ironically, today Chronic Fatigue Syndrome is all over the news with the release of a year-long report. Get this:
I’m
so relieved to know that what I’ve described in this post is now legitimate.
And that giving it a different name will make it all better.
But this is a gratitude journal, so I'm grateful if a respected institution is able to convince mainstream doctors to listen to patients who complain of debilitating fatigue and perhaps learn how to help them. I will be even more grateful if the medical community recognizes that drugs don't cure everything and if they open their minds to alternative treatments like diet, supplements and mind-body practices like Tai Chi.
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