The Spoon Theory

Hey there Bloggie, 

have you heard of "The Spoon Theory"? It's a great theory made up by Christine Miserandino. 

Christine has lupus and came up with the theory one evening while having dinner with a close friend. Her friend had known her for a long time and understood what lupus was and the toll that it took on Christine, but what she didn't understood was the daily impact the illness has on Christine's every day living. And so Christine came up with a very good theory to help her friend understand what it's like to live with a condition that no one can see. 

I find this theory relevant not only for lupus but for many conditions that really take their toll on your body. And the daily struggles and decisions that Christine describes is exactly what me and many chronic pain sufferers face every day. 

I know it's long but I hope you find it as helpful and insightful as I do; both as a way of communicating your pain to others and of understanding how other people live with similar conditions. 

*You can find the link to the website below the article. 

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. 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. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. 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. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

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 a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, 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, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and 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. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? 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. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” 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 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, but I figured I would give her a break; I didn’t want to scare her right away. 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. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that 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”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

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. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

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 wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. 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. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. 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”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. 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. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

- See more at: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/#sthash.HilVkUVw.dpuf


The Spoon Theory written by Christine Miserandino


Thanks for reading

Amy x

Things that happen when I have a flare up

Dear Blog,

I've noticed that there are particular things that I do when I have a pain flare up.

*Pain flare up: when my pain level rises to a higher level (say from a 3 to a 6) in a short amount of time as a result of doing something that aggravates my pain like sitting or standing for a long period, or lifting something heavy.


So when I had a flare up today after sitting for an hour at a meeting I had with the QUT clothing production service (yeaha!) I came home, went to the fridge and started looking for chocolate. Before realising that my pain was starting to rise I started zooming around the kitchen doing 10 things at once and thinking about the nutella toast I was going to make. 

After eating a spoon of Nutella and looking at the clock to see that it was 12noon and I should probably eat a healthy sandwhich instead of the rest of the Nutella jar I realised that what my body REALLY wanted was some anti inflammatory drugs to ease the nagging pain in my neck.

Why didn't I realise there was a nagging pain in my neck as soon as the nagging pain started?

Instead of thinking logically and taking deep breaths in and out and pouring a glass of milk so that I could take the painkillers my mind instead told me that I needed chocolate and to do things like make a cup of tea, unpack the dishwasher, write up my fashion label business plan and check my phone messages in a fast and efficient manner.

So I attempted to do each of these things and of course the pain just gradually built up and up until a little voice said "hey, your necks really sore, and your back probably is to! You should probably take some pain killers and just rest for a bit until they kick in. Then you'll be able to think clearly and logically." 

But why didn't I hear this voice until the pain was at such a level that I couldn't really focus on anything? 

Who knows. 

And luckily no one was around me when it happened because usually if there is they become the victim of a very irritable and short tempered Amy; which also tends to happen before I realise that I need to stop what I'm doing and stretch or use my heat pack. 

Why pain, why? 

Amy. 

Too tired to think of an interesting title

Dear Blogmeister, 

If i was aladdin and i had a blue genie i'd ask for these wishes today; stop my cramps, massage my back and neck and give me energy! 

I'm soooo tired and have cramps and can't stop eating chocolate. i had things planned today, like getting a massage but i was too tired to get out of bed and get myself there. my muscles neeeed to be massaged and thanks to being a woman i am just too exhausted at this time of the month to do the things i need to do. Eh. why must our bodies be so complicated. 

remember when you would run and jump and skateboard with ease? now you can't even get out of bed to get a massage! (WTF?) to relieve the knots in your back that are caused by your need to make me feel like i've carried out a 10000000km marathon triathlon weight lifting tournament that i didn't even get acknowledged for!!!!! 

anywho i am also over job hunting. 
i found a job that would have been suitable except that the 4hr training left me in pain for 2 days. woo. the training involved sitting at a desk watching slide shows and filling out forms. again WTF? 

this makes me think of 'your mumma' jokes..."your mumma's so inept she gets tired from blinking!"   it's funny cause it's basically true. 

well in light of struggling to find 15hrs of work per week (to meet my Centrelink requirements) that doesn't result in me having to take more pain killers and get more massages just to do the job, I can still use my imagination and eyes to be inspired by things that give me ideas for clothing designs, yay!  All I need to do is sit down (ahh fu*%ing sitting.....maybe somehow stand and draw..) and put all of my ideas into a practical clothing design.  And then pay someone to make the design which I can then sell to people who are as outgoing and excited about fun, colourful, quirky garments as I am :)  If I didn't need money to pay off my loan and buy food I would give them to everyone who liked them as a thoughtful gift for being a cool person (i.e you would be classified as cool because you like my designs :) 

Ok now I'm rambling and I can't remember the point of this post... 

Oh I also saw on A Current Affair last week (thanks to my lovely friend Claire for pointing it out to me) that there is a NEW AMAZING surgery that will ELIMINATE back pain FOREVER. 
I don't know how true that is. 
But the girl having the procedure is in a very similar situation to me. Can't sit or stand for long periods and has tried yoga, physio, pilates etc to no avail. 

BUT they didn't mention if she had tried Radiofrequency Neurotomies (which I've had 5 times until it was no longer effective) or Epidurals (which I have now had 2 but they're not as effective as the RF's were because I can't sit comfortably for more than 30 mins, and of course can't blink without needing a massage; exaggeration). 

Anyway she had a surgery which replaced one (or both, not sure) weakend discs with a metal object that works just like a disc. 
The surgery sounds great but I'd like to contact her and find out if her pain is still reduced and if she has had any side effects. The doctors contact details were posted on the website but not the girls. I would contact the Dr myself but that requires SITTING DOWN and scanning my MRI results and writing a long email detailing all of my past treatments etc. 

So if anyone know's a 20 yr old chick in Sydney named Annabel Barrett (spelling) send her my way and we can discuss this surgery. 

Ok time for a break from sitting. Why did I eat the last of my sisters Wonka chocolate last night?? I really want some now :( 

Bye Blogman x 


P.S If anybody reads this; apologies for the bad grammar and spelling mistakes. My body doesn't have the energy or patience to correct such things. 

Dear Bloggie

Dear Bloggie, 

I haven't used you in a very long time and only really set you up in the first place so that I could post pictures of my most favourite and inspiring fashion images. 

I have decided now though, to use you not only as a way to share the visually appealing items that make me feel enthusiastic, excited and happy about life; but to also use you to communicate how I manage my chronic neck and back pain each day and the progress and setbacks that I experience. 

Well I am now going to take a break from the computer as I have been sitting here for approx. 45 mins (using Facebook, checking my email and working out how to use a Blog again) and the pain is starting to set in despite having a heat pack sitting between me and the chair.  This could mean that my entries will be short, but that could be a good thing. 


Well until next time, see you soon Bloggie. 

Amy.