I got this from another forum - was written by someone with lupus, but it also applies for MS or any other chronic condition. I like this way of thinking about how to preserve energy for the important and necessary things. I had to edit it - was too long. Enjoy & maybe share. S
My friend asked what it felt like, not physically, to be sick. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. I explained that the difference in being sick and being healthy is having to make choices, or to consciously think about things when the rest of the world doesn’t have to.
The healthy have the luxury of choice, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire. For the most part, they do not need to worry about the effects of their actions.
I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else being in control.
I asked her to count her spoons: I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with.
She counted out 12 spoons. She laughed and said she wanted more. I said no. I’ve wanted more "spoons" for years and haven’t found a way yet to get more. I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus. I asked her to list off the tasks of her day, including the most simple; each one would cost her a spoon.
When she jumped right into getting ready for work I cut her off and took away a spoon. " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too."
I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about.
I told her she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons".
You do not want to run low on "spoons", because you never know when you truly will need them. We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long.
She was forced to make choices and think about things differently. She had to choose not to run errands, so that she could eat dinner that night.
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing.
It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness.
Wow, What an example. Thank you so much for sharing. I don't have MS, "just" fibro, degenerative oste-arthritis, type 2 diabetes, and heart murmer. I'm running out of spoons really fast LOL. And look perfectly healthy. Will be using this one a lot. Thanks.
I used to get so down on myself for cancelling activities, not playing on the softball team, or not taking my kids somewhere fun for a night. I used to be a sort of social butterfly. I loved parties, games and sports. I felt so guilty for not wanting to go when my husband would want to go get ice cream. It used to be hard for him to understand why.
He understands now, and I've learned to live and be happy without those things. I find joy in getting all the laundry folded - it seriously gives me a great feeling of accomplishment! I've learned to not feel guilty when my house is a mess. Like your analogy, I know how many spoons I need for the day so I try to use them wisely. One extra activity can use all my spoons and then I don't have enough to take a shower and everyone around me suffers! :)
Yes that is a great analogy, especially the shiny spoons... because we sometimes can look good on the outside and feel awful... that's when well wishers or busy bodies... say things like... you look great now... guess things are getting better, right?
No... we just put on makeup, smile a little and that day we are not walking like a weeble wobble ... doesn't mean it all went away...
love the analogy... i think i will cut and paste it and send it to a few friends who need to really understand what chronic illness may be like.
It really makes sense. I tried to exlpain things to my sister in law tonight. She is so lovely and caring and I know she does appreciate how things have effected me, after all I've known her for 12 years and she said I used to never stop, I was always on the go. But I just don;t think she really knew what it's like..but hey, I don't think anyone does until they have been through something like it. She's coming over again tomorrow to see me, so I'll try it on her.
I read that last year, but don't remember where except as you said, it was on a lupus board. It is a great analogy. Especially the shiney spoons someone mentioned.
This past summer I finally got to use a line I have always wanted. I was getting out of my car parked legally in a handicapped space. Some idiot said to me "You don't look handicapped." I simply replied "and you don't look like an idiot, funny how looks can be decieving."
I really like this! I think it's a mentality that helps both...the "spoon holder" to try to be a little more matter of fact and just deal with the fact that you've got the spoons you've got...and do the best you can with them. And it's a beautiful way to try to explain it to other people...not so you can feel sorry for me...just a little understanding, that's all!
Loved your comment Moeck! What a twit they were/are....hahah last laugh though-well done! As I tend to say "it could be worse...I could wake up as you!" I'm ssso glad you got them with that one! Boooya sucker! How d'ya like me now? (I'm available for weddings etc) thank you, :D xx
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