“Spoonies: who we are and how to be an ally”

This article was prompted by some recent criticism of the online chronic illness/spoonie community

https://chronicfeminist.uk/2022/09/17/spoonies-who-we-are-and-how-to-be-an-ally/

 

The genesis of Spoon Theory by Christine Miserandino it’s creator, see https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

I loathe the term spoonie, though, and I wish people would stop using it.

Apart from infantilising patients, it suggests that people with energy limiting illnesses (a) know how many "spoons" they start the day with, and (b) the quantity diminishes predictably in line with effort expended.

That is NOT how ME works, it almost certainly isn't how any chronic illness works, and if anyone said it to me I'd honestly feel like lamping them one.

Luckily my friends have more sense.

 

I am not even sure it is even properly a metaphor. It is representing energy or the potential to undertake activity as divisible into units, but the idea of spoon was introduced as a purely arbitrary token, it could have been any object, to represent an energy or potential for activity unit.

I had previously assumed it was something more sophisticated relating to a spoon’s inherent nature for transferring small fixed discrete units of whatever, I had an image of trying to move a few tons of sand with a teaspoon, but it is not even that, it could equally have been match sticks, tiddlywinks or gaming chips.

However, regardless of my personal feelings, there are a significant number of people who find it a useful way to describe having an energy limiting condition, and I must admit that it surprised me how hard it is to get people understanding that one activity, eg having lunch with friends, has necessary precursor activities, eg having a shower, getting dressed, travelling to the restaurant, etc all with their own energy costs. I do feel we must be cautious devaluing something that some people find helpful to incorporate within their sense of identity.

 

Me and My Spoon: https://www.bonhams.com/auctions/16016/lot/2010/

 

Actually I always found the spoon theory very useful & feel it describes my symptoms very well. And I do have energy limiting illnesses…

Spoon theory doesn’t assume that energy always diminishes in line with the activity, in fact (for example) in the blog that is linked above, it mentions that you can lose spoons along the way. And how infections, colds, emotion, etc can cause you to lose spoons.

I live my life pretty much along the lines of spoon theory, often without even thinking about it. eg I know a bath will take way more energy than an audiobook, so if I have 10 spoons a day, and a bath takes about 6 spoons, then I know I can only do other light tasks before / after, such as an audiobook (maybe half a spoon). Or going for an appointment would be 10 spoons or more, for example, (including getting dressed and ready (about 3-4 spoons in itself), travelling, the actual appt, procedure causing pain etc) meaning that I wouldn’t (or shouldn’t) do anything else that day.

I subconsciously operate this system in my head & find it helpful. It helps me understand why I run out of energy so quickly too: if I have 10 to start off with, but usual daily tasks take a lot of spoons, then of course I run out quickly. And it helps explain PEM for me too: let’s say I did something yesterday and used up 15, so I am carrying over a deficit of 5. so today I start with only 5 spoons instead of 10, and so I run out of energy even more quickly & just an hour or two into the day, I’m completely flattened.

the spoon theory makes a lot of sense to me. I have always thought it explains energy limiting conditions well, I haven’t found any other easy-to-understand explanation that explains it as well for me.

 

I prefer the term “energy limiting chronic illness”. Hopefully it will become better known. But in a tweet, you only have so many characters to play with. And people I presume wouldn’t tend to search using that hashtag or ELCI.

 

I personally like the concept, but was never fond of the name "spoon theory." I actually found it much more useful before I got ME, when I was "only" autistic because:

• I had a normal or nearly normal amount of energy, but certain tasks could be very draining
  
• Thus only tasks requiring social interaction or executive functioning needed to be "paced"
  
• My impairments were static, or at least varied slowly
• Overshooting could be offset with a proportionate amount of rest, rather than having disastrous consequences
  
• What passed for "rest" was certainly different from what "rest" is now
• I could accurately perceive my own energy level. Delayed-onset PEM, and the fact that PEM isn't just tiredness, make this really hard now.

 

I always use the older battery analogy. My energy drains quickly, it takes longer to recharge, when it does it's only at 40% and drains a lot quicker than healthy people. I no longer have data when I go over my energy limit : 0

 

A new, short blog from me, for what it's worth:

"I’m very grateful for the online chronic illness community and feel it can and does make a positive contribution"
https://forums.phoenixrising.me/blo...n-and-does-make-a-positive-contribution.3184/

 

I was thinking of spoon theory yesterday.

I am currently in my second bout of slightly-extended-Covid19. The first bout lasted 5 weeks. I am hoping this time no longer. Whether it is like mild dose of ME I am not sure but the first time reminded me of the intangible sense of being unable to get well despite every effort that I had with EBV years ago. This second time I thought of spoons too.

I had to give a half hour medical lecture at short notice. I also had to arrange to attend some physics lectures next week. And I also had to trawl up and down the West End trying to work out what new music centre to get. I had the sense that each of these was with my capacity both physically and mentally on its own. But I was quite uncertain whether or not after doing one or two of them I would have either physical or mental capacity to do more. In the end I gradually got through. I felt lousy today but might well have done anyway.

I get that different people with ME find things work a bit differently but I wonder whether there is a clue in this spoon story. To me, my problem was less like an old battery running down, although that might describe it, but more like an aging electric mower that cuts out after five minutes use and then when you leave it and try it again it cuts out after two minutes and then it keeps cutting out. The system can produce power for a while but it is clocking up pay back points that eventually cannot be ignored.

 

That’s fairly accurate, for me.

Although:

I haven’t had such a vertiginous jolt back into the last century since my daughter offered to introduce me to a new band she had discovered, called Pulp.

 

You may not have a collection of 250 vinyls to play and evoke memories from 55 years ago. Doors albums, Turangalila, Sergeant Pepper, Janet Baker...

 

Ahh The Doors what a fantastic band, the bass riff on Peace Frog is just a pure delight to me. Never heard of Turangalila will have to check out

Spot on, for me anyway.

Sorry you've got covid again Jonathan, what a pain. I hope you'll feel better very soon

 

Easily 250. Including plenty of Doors. All in a cupboard, untouched for decades, and all now replicated on Spotify, accessible via bluetooth on noise-cancelling headphones or smart speakers, as effective at evoking nostalgia as a catering pack of madeleines dunked in a vat of tea.

There are a few albums I have on vinyl which aren’t streamable. Everything by Cardiacs, for instance. But even then it’s much easier to find a DRM-free MP3 than to footle around with turntables and cables like a cave-dweller or, worse, a hipster.

Edit: taking this back on topic, being housebound is far easier to adapt to in 2022 than it must have been pre-covid, and pre-Internet seems unimaginable to me, though lots of people here presumably had to manage ME at a time when food and clothing (and records) were sold from retail premises and brought home in bags or tartan trollies. At least there is no real reason to leave the house any more except for blood tests and the occasional trip to a relative. Certainly makes the spoons easier to allocate.

 

Messiaen? Doesn't fit on an LP, being one movement and too long. I don't think it was ever recorded until CDs came along.

BTW, have you seen the excellent Janet Baker documentary? It pops up on BBC4 from time to time.