Spoon theory

I’ve started doing something similar to this at home as my wife was getting frustrated with my symptom explanations. So we use a 0-5 scale:

0 = Strict bedrest / bed-bound.
1 = Bed & couch / home-bound.
2 = Very low energy / unlikely work day.
3 = Moderate energy / work slowly.
4 = Good energy / work & maybe more.
5 = Normal energy / a much desired fable.

I usually live with 3s and 4s, but have been having more 1s and 2s recently. Worries me as I hate downward trends with this disease.

Yesterday was a 2. Today, might be a 2 also...

I tend to describe myself as mild/moderate but
on your scale I’m mostly 2
with frequent dips to 1
and regular dips to 0.

So my scale is finer (more steps) in that range.

ETA I think I might have used your scale 4yrs ago when I thought I was burnt out. Back then I was still working (and exercising, firmly convinced it would help).

Wish I had more certainty about what really helps.
 
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It all started in 2003 when a woman with Lupus found a new way of explaining what her life was like to a friend. Christine Miserandino’s story of this moment can be found here and is well worth reading. Honestly, I sometimes tear up a little bit when I read it. For those who don’t want to click the link, here are the basics.

Every morning, you wake up with a certain number of spoons. Each spoon can be used to pay for a certain activity, or spoons can be combined for bigger activities. Imagine you start the day with ten spoons. Brushing your teeth takes a spoon. If you want to wash your hair, you must spend three spoons. Getting dressed costs four spoons. Getting your breakfast takes another one… take care though! Suddenly you only have one spoon left and it must last you the rest of the day.

The spoons here each represent a quantity of energy. The point, of course, is that people with chronic illnesses have so little energy that every single little action has to be calculated and considered. For example, the only reason that getting my own breakfast only takes one spoon is because I collect milk, bowl and spoon on the way back from the bathroom in the morning – everything else can be done sitting down. It’s possible to borrow spoons from the next day, but they’re only a loan.

There are problems with the spoon theory (though I strongly doubt that Miserandino herself intended it to be taken literally). One issue a huge number of people have is that many of us simply don’t know how many spoons we’re going to have on any given day. Bad days tend to come after busy ones but otherwise it’s almost impossible to predict.

Not only that, but a lot of us don’t even know how many spoons we’ve got when we wake up in the morning. It normally takes me two or three hours to tell what kind of day it’s going to be, which is one of the reasons I have a very low-energy morning routine which incorporates an hour’s rest after breakfast.

As well as not knowing how many spoons we’ve got at the start of the day, energy levels can change abruptly – or we can be deceived. I might be feeling quite chipper at lunchtime but by the time I’ve heated up some soup in the microwave and buttered a roll I’m feeling utterly drained. Occasionally I’ll feel absolutely dreadful in the morning but by mid-afternoon find that I’m unexpectedly able to do a bit of tidying up.

It’s also important to mention that while spoons can be borrowed from the next day, it’s not quite so simple as just doing less tomorrow to balance it out. If I use more spoons than I have in a day it leaves me exhausted and in pain for much longer than is proportional.

This is where the spoon theory wins out over simply talking about energy because if I say ‘I’ve used more energy than I have’ it doesn’t make a lot of sense. Spoon theory talks about energy not as what I can potentially do right now, but takes into account the impact of each activity and the energy that I have over days or weeks, or even months.

full article here:
https://ashipofmyownmaking.wordpress.com/2019/02/03/speaking-of-spoons/
 
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Spoons, something we can see, and count. I have often joked I wish I had an energy guage on one of my arms. Then I could check on how I'm doing, and how much energy I have in the "bank".

I can't always tell how I'm doing, and predicting how I'm going to be is not possible, except in the general sense. As above, after busy times there is a tendency to have less spoons. But, other than that, it gets fuzzy.

And, like the comments above, I can feel chipper, and be doing something, and feel dreadful all of a sudden.
 
You mean is there an underlying testable hypothesis? Did they previously test a fork theory hypothesis and it wasn’t significant?

Quite. They should have worked their way systematically through the cutlery drawer and issued chopsticks to the control group.

It’s not as if variable but limited energy is a super-complicated concept which requires cutesiness and cartoons before people can be expected to grasp it.
 
I agree theory is a daft term if you concentrate on the spoon image, but there is an underlying 'theory' that pwME and pw some other chronic conditions have limited capacity to do stuff, and that is varies from day to day. The spoon just happened to be a convenient item to hand someone used while explaining their limitations to a friend. If they had been sitting in a park instead of a coffee shop, it might have been the leaf theory, or on a beach, the pebble theory.

I don't like or use the analogy myself, but I can imagine it being useful particularly in explaining to children why their parent can't do something today that they could do last week. And it can then become a shorthand - 'how many spoons today?', 'sorry, I'm out of spoons' etc.
 
Quite. They should have worked their way systematically through the cutlery drawer and issued chopsticks to the control group.

It’s not as if variable but limited energy is a super-complicated concept which requires cutesiness and cartoons before people can be expected to grasp it.
There's the Unified Cutlery Theory, that expands on the spoon theory. I personally find it very useful.

https://demcastusa.com/2020/03/01/unified-cutlery-theory/
 
I think some people need the cutesy cartoons to illustrate the point, pwchronic illnesses have limited energy that gets used up more quickly.

Entertaining while educating can be more effective at times.

The demo with spoons reminds me of something I read about parents who decided to demonstrate the monthly budget to their kids.

They took out the monthly income in cash and distributed it in piles for each bill, so their children could see where all the money went, and had a better idea of the financial commitments.
 
There's the Unified Cutlery Theory, that expands on the spoon theory. I personally find it very useful.

https://demcastusa.com/2020/03/01/unified-cutlery-theory/

I liked the linked article. Thank you.

I particularly liked the bit about looking and acting OK, but just one more task causes a collapse.

One of my problems with activity is just that, the one more thing to do, and then woops, there's one more thing to do, and one more to do etc. I still look and act OK, but inside I feel light headed and weak, and feel desperate to lie down.
 
I still don’t understand why this analogy deserves to be called a theory.
Generally fair, but compared to what the medical profession has put out on the subject, it's basically science so advanced it's indistinguishable from magic. By that alone it truly deserves the label, by sheer shock value of being actually relevant.

Also by the same standard, when you have to explain something to people who think hand puppet theater for the Moods is up-to-date "science", using analogies simple enough for a child is pretty much necessary.
 
You mean is there an underlying testable hypothesis? Did they previously test a fork theory hypothesis and it wasn’t significant?
Unfortunately, all experimental tests of "put a fork in it" to ward off against BPS fluff have failed, hence the need for a spoon-based system.
 
I don't think anyone who isn't afflicted understands for more than a minute, no matter what metaphor one uses.

I feel fractionated. Using a bunch of spoons, like say 12 of them, is about eleven spoons too many to relate to.
 
The Educate ME programme used spoon theory in seminars with teachers and pupils. It was a physical exercise with actual spoons using different amounts of spoons and a " spoon allowance" of different spoons for different activities.

Being an activity meant it was less abstract. People had to think about the normal tasks everyone takes for granted and allocate spoons - many had run out before the end of a school day ( or lunchtime) . Two spoons had to remain unspent .
Pupils commented that they didn't see the point of struggling throughout the day if you couldn't sleep or shower the next day and talked of what to prioritise .
Lightbulb moments .

My neighbour at the time was an S1 - S2 guidance teacher and used the seminar as part of social education. This was an eye opener for pupils and staff alike.

It may not be accurate , or truly representative, but it got over in 15 mins or so what numerous discussions with year heads over 3 years couldn't .
 
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