Spoon theory

Personally, I come down as a nay on the side of spoons. I can see where people might find this a useful help, but it does not help me, or I guess I don't feel it applies to me.

When I wake up each day I don't have any spoons. There is no way to allot any spoons for my day, because I never have any spoons.

How does everyone else feel about this? I would really like to know.

Thank you all!

 

@Sue Klaus, I don't think having spoons is about feeling like you have energy to do things. It simply means that you can do some activities, but you have a pretty fixed limit on what you can do in any one day without payback. So you have to spend your energy wisely.

There are periods when I'm completely bedbound and feeling very ill, and then I think spoons don't apply. But when I'm able to do a few things, I always have to choose carefully. Cooking dinner for my kids tonight means that I won't also be able to do the laundry. I'll have to schedule that for tomorrow and get help with dinner or takeaway. That sort of thing. Packing both those things into the same day would lead to serious payback in the days to follow.

Spoons is just a way of visualising your activity limits for the day and allocating your energy wisely.

 

@Sue Klaus I think the spoon analogy is a good visual tool to explain what we go through to a healthy person, but I don't feel like it describes my day to day experience. I too feel like I wake up spoon-less. Or with a bag full of useless broken spoons. Or that what I thought was a spoon turns out not to be a spoon (aka I thought I'd be able to handle an activity, but it turns out differently).

So a nay for me too, personally.

 

Perhaps the spoon metaphor works when you describe it as a pacing tool rather than all encompassing ?

The broken or bent spoons could be included/described as follows:

At the end of every day you put your used spoons back into a big bag of useless ones. First thing in the morning you hunt through the big bag for some useful ones...that takes a couple of hours then you find that there weren't as many good ones on one day as there were the day before. Sometimes your two hours gets lucky and you get 10 instead of five etc.

The problem I have with spoons is that it seems quite a random object to describe and before you use it you have to explain why you are using it.

I prefer the phone battery version. You have less battery life than you started with and it has a random charging problem. You can preserve the little battery life you have by not using apps or shutting them down (I.e. Choosing your priorities) so some days you can look at emails but not play music etc. Analogous to,showering or preparing a meal. Sometimes if you haven't managed the app management well, your phone just cuts out suddenly and you can't do any more until it's recharged. The battery takes a long time to charge up (1 day to a week) and this fluctuates.

I like this one because you don't have to explain it too much before people get it. This is good for people who have smart phones ..imagine not being able to use your phone for a week?

I suppose it doesnt explain all the symptoms you get alongside every day while you are pacing?

 

@arewenearlythereyet I prefer the battery analogy as well. Everybody knows how frustrating it is when you 'need' to do something on your phone, but the battery is empty. No way to change anything about it, all you can do is wait, and in the meantime there is nothing you can do, vs. if I don't have a spoon, I can always eat with my hands.

I also like the visual of the bag of mixed spoons: shiny ones, rusty ones, broken ones, disappearing ones, ... Each day you get a new bag, and you never know which selection of spoons you will find in it. That's pretty accurate IMO.

 

The appeal with spoons is the simplicity, yes it isn't accurate, I doubt it was ever intended to be a mirror to reality.

Battery analogy? You can still use most phones at full capability until the battery gets down to 5% or so, when the battery hits 0% the phone has zero useful capability, when our batteries hit 0% we are not dead, unfortunately, how is this reflecting reality of pwME's limitations to those with no experience?

Neither is actually a good analogy, I can't think of anything that would be, and remain simple enough for non pwME to stand a chance of grasping, so pick an analogy you like, any analogy, and run with it

 

The problem with all of these analogies is that they suggest a central store of energy, whereas in reality much of the energy problem happens at a cellular level. I find changing the type of activity much more productive than "using up my spoons" on one, so, for me, a spell on the computer, a short walk, read something, cook something, all mixed up in short bursts means that I can do more. The trouble is that it doesn't easily translate into a simple analogy, or at least not one I can come up with.

 

I like the spoon analogy, not so much for myself, but to help explain the illness to neophytes.

I think the reality of ME is way too complex to explain with such a simple and linear concept.

 

If I were to use an analogy to explain me with ME, I'd be a "used car" -- the gently-used type advertised as having been driven by Grandma to get to church on Sundays. It looks great on the sales lot with shiny new paint and clean upholstery. And, it would pass a short test drive around the block plus a basic mechanical inspection. Unfortunately, only after purchase would more complex problems become apparent.

Me as a used car would have a variable leak in the fuel tank, and a fuel gauge that doesn't accurately show how much fuel is in the tank. The battery wouldn't hold a charge, and would take a very long time to recharge (days/weeks/sometimes months). There would be glitches in the ignition, electrical and computer systems with many crossed and scrambled connections. This would result in system-wide problems affecting all dashboard controls (lights, wipers, climate control, navigation and music systems) plus the steering, braking, and throttle control. For the latter, pressing down on the gas peddle wouldn't reliably make the car move, or speed up.

I'd add another complication to the analogy -- that those vehicles not used for business purposes would be rationed to 5 liters of fuel per week, or month. Driving long distances would involve saving up one's fuel coupons in advance to fill the tank. But having done so (considering the fuel tank leak), wouldn't guarantee the driver actually making it to their intended destination.

 

Somedays the analogy works better than others. I've found kinship with a few other friends who are also "spoonies." The common theme is that we are chronically ill, and while our diseases are different we can at least connect and find commonality as "spoonies." Plus, there is some spoon-themed merchandise available that brings a bit of levity into my situation, especially on bad days when wearing it helps me feel less alone.

 

This is probably a better use than others

 

What he said.

When the battery hits 0%, it isn't dead either. It can be recharged.

I bought one of those cars once. I had all sorts of problems!

 

Aha, but we FEEL dead, and, at least in my case, look and act dead. I do indeed have zero useful capacity.

Phone analogy for the win.

 

Spoons are the best simple analogy I’ve come across. It doesn’t have to be 100% accurate to get the core message across. Going into too much detail runs the risk of people stopping listening at all.

 

I haven't found that anyone w/out the illness relates to the spoon thing. I don't much like it myself, and I feel it alienates or confuses more than it helps healthy people understand, so I don't use it.

Batteries, fuel for the car--those are more relatable, but what works best in my experience is to basically use the spoon explanation, only with "energy bank account" in place of spoons. Most people value money more or less first, so it catches attention; also money essentially represents energy, so the myriad metaphors are inbuilt.

Everyone so far gets an "aha" moment when I talk about starting with a lower energy bank account than a healthy person, about how every "purchase" (activity) is far more costly, about how one can be in perpetual energy "debt", with PEM being equivalent to compound interest when "overdrawing" or overborrowing on my account. Everyone understands that when you stop spending (resting) your re$erves don't get depleted. That if you leave your assets to rest, they may start to accumulate interest, etc etc.

Just my 2¢

 

I thought spoons was because they were spoons of sugar and therefore energy

 

I like the story of how the spoons thing started.
I like how it relates a common broad experience of limitations that is recognised and shared in circles of people with non-ME/CFS conditions. I love being able to share something with people who have other life limiting conditions which are more universally accepted/understood.
It's the history and culture of it that makes it special, not the analogy itself.

Yes, the debt vs credit model with compounding interest does seem more apt for us. ...except it needs an element of high risk investment: losses due to no fault of your own, just pure volatility of the fund.


But to be honest, I don't find that explaining does me any good at all. Be present, smile, ignore all the BS and focus on the reason you're there at all ...and when you can't be there, just don't - with as few words or explanations (to those who don't live it themselves) as humanly possible - is my approach at the moment. I don't know that I'm right but life, and social time, is too short to waste on explanations (to those who won't already understand).

With those I live with I simply tell them there are good days, crash days, bad days and recovery days.
Good days I need to avoid overextending and causing a crash so we can have more of them, bad days you just have to give me some slack, crash days I won't be able to communicate so give me space and quiet without questions, and recovery days I just need to be a bit more careful in order to get back to good days. Then I can tell them: "bad day" and they know. Enough to co-exist anyway.
I find the words: "overdoing it" seem to get the practical aspects across better than anything else. They don't understand the scale of things but they do get some idea.

[personal note from today: Sucks to have people see me on a carefully constructed good day and, assuming I'm doing well, invite themselves over the next day. I tell them maybe text first to see, not wanting to say 'no chance in hell, I'll be crashed tomorrow!', and they are hurt and offended that I 'shut them down' :/
but then I remember that the best people just take it at face value, text, accept a 'bad day sorry' and call by another time.
It's a long road teaching myself not to be driven by other people's expectations. But only I (and other patients like me) know what it's like.
I don't understand every form of cancer and they don't have to understand what's wrong with me. I certainly don't. We just need to live the life we have and know that genuine suffering is legitimate no matter what form it takes. We simply trust and have what empathy we can muster. The less I explain the better the chance they find something to empathise with in their own imagination.]

 

@MsUnderstood I do like your car analogy.

Personally i find the £ analogy the best too. Because most people i know have been broke at some point & understand the notion of having to watch every penny the way i watch all my exertion - so when i explain that i have £10 to spend per wk Whereas they have £10,000 & so for me spending 20p on a trip to fetch something from upstairs is a considered choice (hence my asking them to go instead) and that overspending is charged at an extortionate interest rate. The other think i like about the financial budget is that most people either know what debt feels like or are scared of it, so it gives an (albeit small) suggestion of the punishment/suffering that ensues if we overspend. - Which the spoon analogy doesnt & is why i dont really refer people to it, because it's not just that we run out, but that the punishment for running out/overspend is so appalling. And that generally gets ignored, probably because the type of PEM that people with ME experience is unique, & the spoon theory author has lupus not ME.

I think the way spoon theory came about, with her actually giving her friend a pile of spoons & taking them away one at a time to illustrate, was really effective but i think you could do that with any object you had a pile of in front of them.
I also think it's great to have the camaraderie that comes from the way spoon theory has become shorthand among the chronic illness community.

sooo frustrating when people do that

 

That's exactly why I do like the spoon analogy despite the limitations: give the healthy person something concrete, and then start taking it away. They feel that loss I'm familiar with. There's no promise of future spoons to come. Once they're gone they're just gone. If someone is telling you that rest will make you feel all better, you just need more sleep, or anything else that assumes there's a quick fix, then this concrete example can demonstrate just how little we have to start with.

For me personally, the phrase "pushing the envelope" is very descriptive. The envelope is the altitude and distance a plane is able to travel. Pushing these limits expands where the plane can go. For me, those limits would be activity length and intensity. The limits of my envelope change constantly so I have to keep checking in and maneuvering to stay within that "okay" zone. I can push one of those limits a little if I need to, but it means I crash after using my body in a way it isn't adapted to being used. Pushing the envelope doesn't mean I'm healthy. It just means I'm trading future opportunity to do something I need to do now, and I'm going to need lots more self care after that crash happens - and my envelope will be a lot smaller too.

Car and battery analogies are good too - whatever gets the other person to understand that 100% is not possible for us. The smartphone one is great because of how different apps can be correlated with real life activities.

I have started tracking my fatigue three times a day according to my own scale. I'm still tinkering with the definitions of each level because I don't have a good intuition for what my true limits are. I'm often too optimistic. However some patterns are emerging and I've been able to tell my family if it's a 4 day or a 2 day, instead of having to describe how I feel when I don't even feel like I can do that. So my way of communicating with them uses that scale instead of trying to do spoonie math.

 

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...