SPOON THEORY--A MUST READ!
I know this is long but I think everyone here can relate. My uncle sent this to me, he has MS and though this was written by someone with MS, I think it is an excellent example of what anyone with a chronic illness goes through each day. You'll probably want to show it to every person you know.
My best friend and I were in the diner, talking. Asusual, it was very late and we were eating Frenchfries with gravy. Like normal girls our age, we spenta lot of time in the diner while in college, and mostof the time we spent talking about boys, music ortrivial things, that seemed very important at thetime. We never got serious about anything inparticular and spent most of our time laughing. As I went to take some of my medicine with a snack asI usually did, she watched me with an awkward kind ofstare, instead of continuing the conversation. Shethen asked me out of the blue what it felt like tohave MS and be sick. I was shocked not only becauseshe asked the random question, but also because Iassumed she knew all there was to know about MS. Shecame to doctors with me and she saw me walk with acane. She had seen me cry in pain, what else was thereto know? I started to ramble on about pills, and aches andpains, but she kept pursuing, and didn't seemsatisfied with my answers. I was a little surprised asbeing my roommate in college and friend for years; Ithought she already knew the medical definition of MS.Then she looked at me with a face every sick personknows well, the face of pure curiosity about somethingno one healthy can truly understand. She asked what itfelt like, not physically, but what it felt like to beme, to be sick. As I tried to gain my composure, I glanced around thetable for help or guidance, or at least stall for timeto think. I was trying to find the right words. How doI answer a question I never was able to answer formyself? How do I explain every detail of every daybeing effected, and give the emotions a sick persongoes through with clarity. I could have given up,cracked a joke like I usually do, and changed thesubject, but I remember thinking if I don’t try toexplain this, how could I ever expect her tounderstand. If I can’t explain this to my best friend,how could I explain my world to anyone else? I had toat least try. At that moment, the spoon theory was born. I quicklygrabbed every spoon on the table; hell I grabbedspoons off of the other tables. I looked at her in theeyes and said “Here you go, you have MS”. She lookedat me slightly confused, as anyone would when they arebeing handed a bouquet of spoons. The cold metalspoons clanked in my hands, as I grouped them togetherand shoved them into her hands. I explained that the difference in being sick andbeing healthy is having to make choices or toconsciously think about things when the rest of theworld doesn’t have to. The healthy have the luxury ofa life without choices, a gift most people take forgranted. Most people start the day with unlimited amount ofpossibilities, and energy to do whatever they desire,especially young people. For the most part, they donot need to worry about the effects of their actions.So for my explanation, I used spoons to convey thispoint. I wanted something for her to actually hold,for me to then take away, since most people who getsick feel a “loss” of a life they once knew. If I wasin control of taking away the spoons, then she wouldknow what it feels like to have someone or somethingelse, in this case MS, being in control. She grabbed the spoons with excitement. She didn’tunderstand what I was doing, but she is always up fora good time, so I guess she thought I was cracking ajoke of some kind like I usually do when talking abouttouchy topics. Little did she know how serious I wouldbecome? I asked her to count her spoons. She asked why, and Iexplained that when you are healthy you expect to havea never-ending supply of "spoons". But when you haveto now plan your day, you need to know exactly howmany “spoons” you are starting with, which you wontknow until you wake up. To answer your question we’llstart your day with twelve. It doesn’t guarantee thatyou might not lose some along the way, but at least ithelps to know where you are starting. She counted outthe12 spoons. She laughed and said she wanted more. Isaid no, and I knew right away that this little gamewould work, when she looked disappointed, and wehadn't even started yet. I’ve wanted more "spoons" foryears and haven’t found a way yet to get more, whyshould she? I also told her to always be conscious ofhow many she had, and not to drop them because she cannever forget she has MS. I asked her to list off the tasks of her day,including the most simple. As, she rattled off dailychores, or just fun things to do; I explained how eachone would cost her a spoon. When she jumped right intogetting ready for work as her first task of themorning, I cut her off and took away a spoon. Ipractically jumped down her throat. I said " No! Youdon’t just get up. You have to crack open your eyes,and then realize you are late. You didn’t sleep wellthe night before. You have to crawl out of bed, andthen you have to make your self something to eatbefore you can do anything else, because if you don’t,you can't take your medicine, and if you don’t takeyour medicine you might as well give up all yourspoons for today and tomorrow too." I quickly tookaway a spoon and she realized she hasn’t even gottendressed yet. Showering cost her a spoon, just forwashing her hair and shaving her legs. Reaching highand low that early in the morning could actually costmore than one spoon, but I figured I would give her abreak; I didn’t want to scare her right away. Gettingdressed was worth another spoon. I stopped her andbroke down every task to show her how every littledetail needs to be thought about. You cannot simplyjust throw clothes on when you are sick. I explainedthat I have to see what clothes I can physically puton, if my hands hurt that day buttons are out of thequestion. If my shoulders and back hurt I wont be ableto put on a bra. If my hair is falling out I need tospend more time to look presentable, and then you needto factor in another 5 minutes for feeling badly thatit took you 2 hours to do all this. I think she was starting to understand when shetheoretically didn’t even get to work, and she wasleft with 6 spoons. I then explained to her that sheneeded to choose the rest of her day wisely, sincewhen your “spoons” are gone, they are gone. Sometimesyou can borrow against tomorrow’s "spoons", but justthink how hard tomorrow will be with less "spoons". Ialso needed to explain that a person who is sickalways lives with the looming thought that tomorrowmay be the day that a virus comes, or a treatmentreaction, or any number of things that could be verydangerous. 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 berealistic, and unfortunately being prepared for theworst is part of a real day for me. We went through the rest of the day, and she slowlylearned that skipping lunch would cost her a spoon, aswell as standing on a train, or even typing at hercomputer too long. She was forced to make choices andthink about things differently. Hypothetically, shehad to choose not to run errands, so that she couldeat dinner that night. When we got to the end of her pretend day, she saidshe was hungry. I summarized that she had to eatdinner but she only had one spoon left. If she cooked,she wouldn’t have enough energy to clean the pots. Ifshe went out for dinner, she might be too tired todrive home safely. Then I also explained, that Ididn’t even bother to add into this game, that she wasso dizzy, that cooking was probably out of thequestion anyway. So she decided to make soup, it waseasy. I then said it is only 7pm, you have the rest ofthe night but maybe end up with one spoon, so you cando something fun, or clean your apartment, or dochores, but you can’t do it all. I rarely see her emotional, so when I saw her upset Iknew maybe I was getting through to her. I didn’t wantmy friend to be upset, but at the same time I washappy to think finally maybe someone understood me alittle bit. She had tears in her eyes and askedquietly “How do you do it? Do you really do thiseveryday?” I explained that some days were worse thenothers; some days I have more spoons then most. But Ican never make it go away and I can’t forget about it,I always have to think about it. I handed her a spoonI had been holding in reserve. I said simply, “I havelearned to live life with an extra spoon in my pocket,in reserve. You need to always be prepared” It’s hard, the hardest thing I ever had to learn is toslow down, and not do everything. I fight this to thisday. I hate feeling left out, having to choose to stayhome, or to not get things done that I want to. Iwanted her to feel that frustration. I wanted her tounderstand, that everything everyone else does comesso easy, but for me it is one hundred little jobs inone. I need to think about the weather, my temperaturethat day, and the whole day's plans before I canattack any one given thing. When other people cansimply do things, I have to attack it and make a planlike I am strategizing a war. It is in that lifestyle,the difference between being sick and healthy. It isthe beautiful ability to not think and just do. I missthat freedom. I miss never having to count "spoons". After we were emotional and talked about this for alittle while longer, I sensed she was sad. Maybe shefinally understood. Maybe she realized that she nevercould truly and honestly say that she understands. Butat least now she might not complain so much when Ican't go out for dinner some nights, or when I neverseem to make it to her house and she always has todrive to mine. I gave her a hug when we walked out ofthe diner. I had the one spoon in my hand and I said,“Don’t worry. I see this as a blessing. I have beenforced to think about everything I do. Do you know howmany spoons people waste everyday? I don’t have roomfor wasted time, or wasted “spoons” and I chose tospend this time with you.” Ever since this night, I have used the spoon theory toexplain my life to many people. In fact, my family andfriends refer to spoons all the time. It has been acode word for what I can and cannot do. Once peopleunderstand the spoon theory they seem to understand mebetter, but I also think they live their life a littledifferently too. I think it isn’t just good forunderstanding MS, but anyone dealing with anydisability or illness. Hopefully, they don’t take somuch for granted or their life in general. I give apiece of myself, in every sense of the word when I doanything. It has become an inside joke. I have becomefamous for saying to people jokingly that they shouldfeel special when I spend time with them, because theyhave one of my "spoons".
The spoon theory has been around for years,, I think your version was mitigated to help Ms sufferers, hopefully it can get the word out to people who "I dont know what that is" is the answer to everything,
I think the reason it fits well with lupus it that it was originally written by a lupus sufferer
that site has many good things on it
Fair Oaks California