What’s your number on the 100 Spoons Scale?

Ever heard of “Spoons Theory?” The quick version is: Chronically ill people, and often people with other disabilities as well, often have much less energy to spend. In other words they only have so many activities they can do in a day, no matter trivial those activities are, or how healthy they look or what you see them doing in a given moment. Talking about “spoons” of energy is one way to visualize just what that means. If you’re not familiar with the phrase, please search “Spoon theory” or go here:

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

In my case, I have Ehlers-Danlos Syndrome, which is both an ongoing illness (MCAS) and a disability (due to badly formed collagen and therefore weak connective tissue.)

Spoon Theory corrects the simplistic attitude that (sick) people can either perform an activity, or not do it at all; when the reality is that when you’re chronically ill, your “todo” budget is very slim, whatever your apparent physical abilities or disabilities, because while you can push yourself briefly, you can’t push yourself for long. In my case, I do everything I can every day without pushing my pain level so high I can’t sleep. But that isn’t much.

Recently, it occurred to me to take Spoon Theory a bit further, to quantify just what I and others am dealing with by creating a scale, for comparison. I’d like to hear from others what their numbers on this scale are.

So to start to create our Spoons Scale, we need a baseline. Our baseline is the amount of activity — that is the number of things and total work — that a healthy 22-year-old can perform every day, day after day, and month after month without taking a weekend off or becoming so exhausted that they can’t continue.

Note that we’re not talking here about how much 22-year-olds actually choose to do, since they may well choose not to push themselves. We’re just talking about the pace that a healthy 22-year-old could keep up; NOT the amount the average 22-year-old actually does in a day (something I don’t know about, and never did.) Conversely, we’re not talking about what a 22-year-old could do for a few frantic days — our baseline measure (which we’re going to say is equal to “100 spoons”) is the pace they could set and stick to, for a year and more.

The number 100 spoons is arbitrary, of course; but it represents 100 percent of what a healthy young person could do every day.

Question 1: Now please estimate how much of that 100-spoon workload you could do, at your present age and state of health, and be able to keep doing indefinitely without a break. Make sure you don’t flatter yourself (or just despair and cry zero!) Again, this isn’t what you could do if you really wanted to for a couple weeks and then rest, this is the daily pace that you believe could keep up forever. (If you take regular 100% rest days, and must, just average these in.)

Sadly, for so many of us with chronic illnesses, it’s not a high number. It’s soberingly small. I asked three disabled, chronically ill and aged people I know what their numbers were. One is an 82-year-old man in good health for his age. The number he gave was 10. 10% of what a 22-year-old could do. The next person I asked was an MS survivor whose health has been stable and improving for some years (he’s another sunseeker like me), but who was severely affected by MS when young. His number was also about 10, according to him. The last person I asked was a brain cancer survivor. I thought his number might be 30, because I know he goes to the gym every day, and while he has trouble walking he’s always in a good mood. To my shock, his stated number was 5. He reported that he only every does what is strictly necessary in any given day, and that improving his walking by exercising at the gym is on that very short list. When I thought about it, I realized that he and I only had only ever met at points on a straight line between his place and the gym he goes to. Which proves that even if you are disabled or chronically ill yourself, as I am, you still easily overestimate how well other people are, and how much they can do — because you only see them at their best. This is true even if you’re known them for decades.

As for my number — the number I gave (this was a few months ago) was two. Note that the one of these four people with an active chronic illness is also the one with the lowest number of spoons. I’m also — by far — the least likely of these four people to get any help of any kind or sympathy from my friends, relatives, or strangers. In fact, I’m the most likely to get vituperation, accusation, hatred, or abandonment from them because my lack of activity seems to them to be a moral deficit to them, or at least, it pleases them to think so. That’s chronic illness for you. A century ago, people with multiple sclerosis used to get the same sort of abuse from all directions (believe it or not); and now it’s my turn, that’s all.

I should say that I’m continuing to figure out the environmental triggers that affect my illness, and I’d now say my number is 4, with bursts of 8. Still, I can’t count on more than four spoons on an average day.

So… what’s your number?

Now, for my second Spoon Theory question, I want to get a bit more subtle. One of the great problems of being chronically ill is that there’s a burden of housekeeping, cooking, and shopping activities that you can’t entirely avoid. You can cut down on them a lot, (screw bourgeois standards!) but in the end most of your “spoons” are spent doing things you don’t want to do, but simply must do. Activities which don’t reduce your real and pressing todo list at all. But they have to be done, at least a very bare minimum of them. Unfortunately, after these necessary tasks are complete, you may have very few spoons — or no — spoons left to do the things you want to do.

Let’s call the very few spoons you have left over, and have a fairly free choice about spending, your “Discretionary Spoons.” Let’s revisit our healthy single 22-year-old. They probably spend 15–20 spoons on the “necessary” household tasks, leaving them with at least 80 “Discretionary Spoons.” So many, they won’t even bother to spend some of them. (Whereas, any chronically ill person you’re looking at probably spends every single spoon they have, and still feels they “should” be doing more.) How many of my 82-year-old friend’s spoons are discretionary? If you count his daily walks as necessary to his health (as he does), maybe 2. Maybe 1. (It doesn’t take any spoons to click on YouTube and keep watching most of what’s put in front of you, so we aren’t counting that habit of his.)

This leads us to question 2:

Question 2: How many Discretionary Spoons do you have?

Admittedly, this is a rather inexact question. Some people will be more willing to cut down on housework/laundry/cooking/shopping than others. Does visiting relatives who are in town for the first time in a couple years count as discretionary? What about filing your income tax, if you don’t owe money. Is that discretionary?

In my case, I’m sick enough that it is. I don’t absolutely have to do it (and I don’t ever owe tax), so most years, I don’t file for the refund. Not that year, anyway. Getting a tax refund is just too far down my very long master todo list. What about repairing a baseball cap so you can start wear it again, as I did yesterday. Is that “discretionary?” In my case I’d say yes. Dating or dancing don’t appear on any of my lists, discretionary or not. I just don’t have the spoons.

I’d like to give you an idea of just how extreme life on a couple spoons is. Housework has to be cut down to a fare-thee-well. Back when my spoon-budget was 2 — I recently realized — the time between my taking a clean bowl down from the cupboard, and that bowl returning that cupboard, after having been washed with soap, was often a full month or more. (I eat out of bowls, not plates, because they’re more reusable.)

Here’s how that works: I never started more than one bowl a day, and I reused it all that day without rinsing because I never cook more than one meal a day, if that. So the bowl was usually being refilled with the same meal, plus I don’t mind mixing different tastes. At the end of that day, I’d dip my bowl under the tap and leave it on the counter. For the next couple of days I’d reuse it the same way, similarly. After maybe three days, a quick-rinse (just putting it under the tap) isn’t sufficient. So I’d use my hands and rinse it with force under hot water for some seconds, removing any visible food then put it up to dry. However, after perhaps nine days, just hands and a quick rinse isn’t going to work. At which point that bowl gets put aside until I have three or four of them to soak overnight and then wash. (My sink takes four bowls at once.) Four times nine equals 36 days between the time that first bowl left the cupboard, and when it got some soap on it and went back in. If all went well! Too much fatigue or illness, and that time was often extended. On the other hand, now and then I would spent extra energy shortening that time by cleaning a few dishes. Luckily, I had nobody’s germs to worry about but my own.

Today, with a daily spoon budget of four, my second number is one or perhaps two Discretionary Spoons per day, (I’m still not doing a heck of a lot of housework.) I can estimate this closely because I regularly make a list of three things on a todo list that I create in the evening and then read in the morning. That little list rarely gets completed, and sometimes has items on it like shopping or laundry that are not actually discretionary. For myself, and almost every chronically ill person, anything that doesn’t absolutely have to be done takes time to get to. For example, typing this article (while lying flat) is something that was at the top of my mind for at least a week before I started it, and now I’m rewriting it a week or two later.

So… what is your discretionary number of spoons?

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Russell Irvin Johnston

I've read at least the abstracts of (far) more than 250,000 peer-reviewed medical articles, I studied the history and philosophy of science at University.