“Spoon Theory”- aka Life with a Chronic Illness

I came across this article on another woman's blog. She also has Fibro and this article could not describe the feelings better. A person who has not personally experienced a chronic illness will never truly understand.

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”.

The Good, The Bad and The Upcoming (Part 2)

There is so much to update you on that I will need to do this in different parts. Plus I would be writing for hours if I did everything right now. I'll write one more right now and then will continue either later today or tomorrow.

So what's upcoming?? Alot, but I'll keep on the employment issue right now. Once I decided that I was done with The Shade Tree- I started looking for some new jobs. I already knew that I would never find a job making what I was making at Tubman (I was there for close to 7 years)- so I first figured out the lowest I could survive comfortably on. I also made it a point to not apply for jobs within social services, except for one amazing agency that I learned about at a meeting.

Las Vegas has tons of employment search type websites, which makes sense considering the type of town it is. One thing that I realized is a lot of jobs, all serving jobs, need to have the cards I wrote about previously. I still have not obtained these cards. I know that at least for one of the cards, you need to have a letter of intent to hire before you can obtain the card. I looked at alot of postings on Craigslist as well for jobs. There are at least 10 new postings in the employment section on there every MINUTE. So I would copy and paste ones that were interesting to me, mostly those having to do with Administrative or Data stuff.

One job that caught my eye....which I'll explain more in a minute...was for either a clerk or hostess at a new Gentleman's Club. For this position, you had to apply in person either on Monday or Tuesday...so after leaving The Shade Tree I headed there to apply. While I was sitting in the club filling out the applications, the owners/managers or whoever they were starting walking around asking all of us which position we were applying for. Every table said dancer.....so they all chatted and all of a sudden I was the only one in the club now. So when I handed the my application, my answer was anything except dancer. I can face the fact that I don't have a dancer/stripper body.....but I could seriously never do that anyways. I interviewed on the spot for cashier, but I am unsure when they are opening or when they are getting back to people.

Now, to explain....In MN, I would never have considered working in a strip club no matter the position. I truly believe that most of the clubs in MN exploit women....so why would I consider it here. There is no way to explain the difference except to say it's different here. There are counties in NV where prostitution is legal. Those I have met out here that work in strip clubs, truly enjoy what they do. It's not the stories of I need to do this for the money to survive like I would hear in MN. So here in NV, I would work in such a club under one condition.....I HAVE TO BE WEARING CLOTHES AT ALL TIMES.

Once I arrived home, I was going through emails and came across one regarding an application I submitted to the Rivieria Hotel and Casino. I almost didn't open it since most of these emails have been the "Sorry, we hired someone else...." type letters. I,in the end, did open the email and was surprised to see that the Rivieria wants to interview me for the Risk Management Coordinator position before the week is over. This position is mainly dealing with data entry and data analysis for the security department. Those who really knew my work at Tubman, would know that this is right up my alley. Since receiving the email, I have been playing phone tag with them. I plan on calling them in a few hours after she is in the office to get this interview set up.

I think that's about it for this morning. Writing seemed to be pretty therapeutic to me this morning as I now think I might be able to sleep.

(Other parts to include boys, clubs, my Kentucky friend and more......)

The Good, The Bad and The Upcoming (Part 1)

When I was talking to mom the other day, she mentioned that alot of people, especially family members have been asking about me because they noticed I have not written anything in a long time. So first off, let me tell you all, I am very sleep deprived due to Fibromyalgia today but with all the other stuff that is going on.....the stress could have brought it all on. So where to I begin since it has been almost a month since I last wrote. Bear with me as this may be very scattered, but as the title suggests.....there is some good, bad and upcoming things.

The Shade Tree
Anyone who has read my blog knows how excited I was to have gained employment at The Shade Tree. My official first day was April 12 (I think). I was terminated (yes, I have now been fired for the first time) on June 1- yesterday. I was learning through my employment at The Shade Tree that things are very different outside of the Tubman world. Sometimes you don't realize the stuff around you until you're in a similar situation elsewhere. I was working as a Victim Advocate, essentially a case manager for the women at the shelter who were victims of violence....whether it be street violence, gang violence or domestic violence. I would assist with intakes for those coming into the shelter, but mostly did intakes with victims of violence. I facilitated the Healing Support Group- which was getting rave reviews. My group grew from 16 the first time to almost 40 the last time I facilitated it. Because the group was for more than just our victims of violence, I had to be sure not to make it a Domestic Violence Group. We did alot of meditation, learning how to self-soothe, discussing self-care and such. I also completed Victims of Violence Assessments, which went through their current situation all the way back to whether their parents had been abused. One the assessments was done, a case manager was assigned, and those assigned to me then completed a case plan. From there on, I met with them at least once a week to assist in the completion or updating of their case plan.

I realized a lot of things from my short time with this agency. I learned mostly that Tubman truly is a pioneer in the field. I was with Tubman while some of the changes were occurring to make it more client focused. I was working with a woman who was severely traumatized by some abusive actions towards her. Normally a VV Assessment HAD to be done within their first 24 hours in the shelter. I met with this woman multiple times within her first week, but was unable to complete the assessment because she was not emotionally ready. There was even one day she said she was ready, but I told her that I didn't think it would be beneficial to do it at 9pm at night considering she may end up needing support long after my shift was over. We worked through her emotions and got to the point where she was ready- but the whole time I was being asked why this wasn't done- and my answer of she's not emotionally in a place to complete this did not seem acceptable. There were a few different instances of this kind of questioning happened when it came to the way I was working with people. I was normally asked Why I did something, instead of being told, we do it this way or here is some feedback.

I then got written up- which was twofold. One part was that I called in sick and was REALLY ill, but I didn't do it within the time frame the manager liked. I tried calling her but couldn't get a hold of her, so I called a different manager and then left mine a message. I was okay with this part of the write up, because yes I should have left the message earlier. But then as I am reading through the write up, I was also written up for 'Consistently breaking the dress code.' The only times a dress code was brought up was during orientation/first week of training. No one ever approached me to say that what I was wearing was outside of our restrictions, so I was unaware. I made a point to always take notice of what other people were wearing so that I was wearing something similar. I signed the write up initially, but then went back to my manager and told her I didn't agree with the dress code part. We ended up having a meeting with her manager present and everything I was feeling ended up coming out. I was pissed about the dress code thing because when I asked when or how I broke the dress code they were unable to provide me an answer. I explained that if someone would have ever said anything to me, I would have corrected it and made sure not to wear such an item again. (I eventually found out how I broke the dress code when I asked HR about it and explained that I was upset that no one could provide me an answer. Once she told me, I had an Ok moment and thanked her.) During this meeting, I told them that I felt like I was being set up to fail. That I was being criticized instead of being given feedback and that this wasn't working for the communication style I had. We eventually worked through some of this and were able to come to a happy medium with our different communication styles.

How did I get terminated though you ask? I woke up on a Tuesday (first day of work week for me) and had a backache. By that evening, every movement made me cry and my back was burning. I went to Urgent Care and saw an amazing doctor who was able to tell that the tissue around my spine was inflamed causing all this pain. She gave me note to be out of work through that Friday. She verbally told me that if I felt good enough to work, then to go ahead. Well I didn't listen to her at all, and went back to work the next day. I was talking with a co-worker about insurance and health care stuff in Vegas and how it is different and I believe I may have mentioned something about the note from doctor. Well when I was walking back into the building, I slipped on a banana peel (SERIOUSLY I AM NOT KIDDING) and fell. They immediately made me fill our accident report and was giving me directions to see doctor that day (which includes a drug test for any injuries occurring at work). The note got brought up and I kept assuring them that my back hurting was from something else and that I was unable to take the medication prescribed while I was at work.

Well, I got quite the earful regarding being at work when I had this note. I tried explaining that since I didn't receive benefits, I could not afford to miss almost a week of work. Didn't matter, I was told not to come back until Saturday. On Friday, I received a message from HR saying not to come in on Saturday as we needed to have a meeting but that I would be paid for Saturday. I immediately knew I was going to be fired. I had already decided that I was not happy there long before this week happened. I worked on my resignation letter but got lots of feedback about how going there to drop keys and letter off was not a good idea. So I started applying for new positions, while having every intention of resigning if they did not fire me on Tuesday anyways. So I go to work Tuesday morning and everything seems normal. Gave my manager papers from doctor and went to work on some information she needed for a report. I worked at my desk on grant stuff for close to two hours, when she finally asked me to come with her. I get to the conference room and it is me, my immediate manager, Executive Director and security guard. There is a termination letter on table, so I read through it and asked for a pen to sign it. The beginning of a speech was coming, so I interrupted and said that I understood, would go with manager to get my stuff and would be on my way.

Official reason for my termination:
~Lapse in Judgement - for coming to work against Dr. wishes which makes an unsafe situation for the clients and everyone else.
~ Breaking policy - because I didn't follow chain of command and was talking to a different manager about my fall and Dr. note. Funny thing is, that was the only manager in the building when it happened....but oh well.

I can honestly say that these last 20 hours, I have felt more peace than the whole time I was working there. The security guard had to walk me out and he was aware that I had been unsure about the job- so I told him that I had my resignation letter in purse and that obviously I just didn't need it. Also during all this, I decided that it may be time to take a break from social services anyways. I have worked in this field long before I was even an adult. My entire adult life has been devoted to working with people who had multiple barriers and abuse. It's time for my self care to include a job that's a little more uplifting for a while.

(Will be continued in Part 2)