Monday, March 4, 2019

Spoon Theory, Hit Points, and now, The Money Model of M.E.

Everyone knows money.  Most people know what it's like to come up short.

Based on that, here's a way to explain the energy depletion experienced by people with M.E.

Image: background of assorted coins. 
What if you never knew when you would get paid, or how much money you were making? 
Then, what if prices of goods and services varied wildly from day to day,
making it even harder to budget? 

On top of that, what if you were often robbed, or lost all your money?
With finances like that, every time you spent any money it would be a gamble.
You’d never know if you'd have enough money for the next thing you needed.
Think “energy” instead of “money,” and that’s life with Myalgic Encephalomyelitis.
The Money Model of M.E. (or “cfs”)

Budgeting Energy on a Constant Deficit

I never know how much energy I'll have in a given day, so I can't plan ahead.

I never know how much energy it will cost me to shower and get dressed, to cook a meal, or even to make a phone call.

Sometimes, it's like losing money: I might suddenly lose all my energy, with no idea where it went. And I can't even hope to find it down the couch cushions.

Sometimes, it's like I've been robbed: someone negative or a stressful situation comes along and saps all my energy. Whatever plans I had must be scrapped, because I had to use up my energy negotiating with a difficult person or problem.

And then, I never know how long I will have to work, to earn that money back. That is, how long I will have to rest and de-stress before I have energy to do anything else. And let me tell you, resting completely enough actually is really hard work. I have to restrain myself from doing stuff, and retrain my brain not to get stressed about all the stuff I'm not doing.

So, if I said, "Hey, I'm going to take away all your money, but every now and then I will give you some, and then I'll charge you for everything you need, but I'm not going to tell you ahead of time how much anything costs," well, that would be just ridiculous, right?

But that's what it's like to get sick with Myalgic Encephalomyelitis.


You've probably heard of the spoon theory. It's a well-known model of the energy depletion experienced by people with various neurological diseases like M.E., Lupus, Fibromyalgia, "cfs," etc.

Basically, you start the day with so many spoons. Say, a dozen. If it takes one spoon to make and eat breakfast, one spoon to shower, one to get dressed, and one to walk, drive, or take the bus, then you've already used up four spoons before you've really done anything for the day, and you only have eight left.

What that doesn't explain is how not only does the number of spoons you get can vary from day to day, but the number of spoons it costs to do something varies, too, and people can rob your spoons.

Image: symbols for various activities are lined up in columns beneath one spoon, two spoons, three spoons, and four spoons. Text: The Spoon Theory is a creative way to explain to health y friends and family what it's like living with a chronic illness. Dysautonomia patients often have limited energy, represented by spoons. Doing too much in one day can leave you short on spoons the next day. If you only had 12 spoons per day, how would you use them? Take away 1 spoon if you didn't sleep well last night, forgot to take your meds, or skipped a meal. Take away 4 spoons if you have a cold. The Spoon Theory was written by Christine Miserando, which you can check out on her website www.dysautonomiainternational,org
Dysautonomia International Awareness Advocacy Advancement

Hit Points

You might have seen this variation: the hit points model. It uses "hit points" like in a roleplaying game, instead of spoons. That makes sense, since just like different characters at different levels in a RPG, different people have different numbers of hit points; that is, different amounts of energy.

Also, I like how it explains that people can sap you of hit points. But it doesn't explain how you can be a Level 8 Fighter one day, and some other day you're Level 2 all of a sudden, for now known reason.

Image from a tweet by They call me Mister Vimes @mistervimes
Text: Had a conversation on "spoons" and "emotional energy": I use "hit points" instead of spoons. Daily adventures wear down your hit points. Rest restores them over time. Some people are clerics and they help fill your hit points. Some people are vampires and steal your hit points. 9:33 AM, 24 Feb 19, Twitter for iPhone
I like the idea that some people can add to your energy, but really the only way they can do that for me, is by spending their energy to do something I would otherwise have to do myself, like cook for me or wash the dishes for me. Then, not having to spend my own energy gives me more to spend on other things like showering and getting dressed.

Where Shortfalls Come From

So, the way that fits in with my Money Model is that someone can buy something for me with their money, if they want to help me out. But all too often, people cost me money, without even knowing they're doing it.

Then add to this, that I'm one of the people with M.E. who experience intense pain along with the intense exhaustion. The amount of pain fluctuates. Like a day when I've got a cold or flu on top of The Usual Sickness, a high pain day means -- you guessed it -- low energy. Just like you can't earn money when you're out sick, I don't get energy when I'm in pain.

Yoink It but Please Give Credit. 

I hope you'll find the Money Model helpful for understanding your neuroimmune diseased friends and loved ones, or helpful for explaining your own energy deficit to others. Feel free to use it, but give the credit to me, Creek. Thanks!

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