You don't look sick....the spoon theory

My goodness, this story has really hit home with me. I hope that all of my close friends and family read it and find it helpful at exlpaining how difficult it is to get through every single day when you are struggeling with illness. It has been copied and pasted below.

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

Gratitute quote

‎"Being in a state of gratitude actually creates magnetism, and of course, a magnet draws things to itself. By giving authentic thanks for all the good you now have, as well as the challenges, through this magnetism you'll start the flow of more good into your life." - Dr. Wayne Dyer

Chiari Poem/ relapse

A friend of a friend wrote this poem below and posted it on her Facebook. I just loved it. What it does not mention is the years and countless trips to doctors where they have no idea what is wrong with you. Thank goodness we have a diagnosis now! I am going to my primary care provider today. I have had a little relapse from Christmas. I was having migraines daily, tremors, difficulty walking, talking and fatigue. It seems to be subsiding. I started cognitive therapy last week. It is focusing on getting my life on a schedule and keeping a daily planners so that I do not forget important things. You know, like picking Weston up from school or doctors appointments. hee hee. So my schedule has been very busy. It consists of doing physical therapy three times a week and cognitive therapy two times a week. Luckily the cognitive therapist is also a trained speech therapist and helps me with that. Apparently it is the same area in the brain that is affected, the cerebellum. I hope everyone is recuperating from the Holidays. Sometimes it can be a little bit of a letdown after the build up to them. I have resigned from my position at the VA. That was VERY difficult for me. I am sure that contributed to my relapse. I had finally gotten into the position that I had wanted but my body just can not work right now. Hopefully after all of the rehabilitation, I will be able to work as an RN again. But for now, I just need to focus on getting better. It has been just over two months since my tethered cord release. I am still very tender. It has been nice to have my necks full range of motion and to be able to walk without a walker, and finally....being able to drive is FREEDOM! About a week ago I went to the grocery store, shopped, loaded the groceries, and then sat in my car exhausted. When I was sitting there, I realized that was the first time that I had gone to the grocery store all by myself in over 8 months. I was so exhausted that I was not sure that I could unload the groceries. Luckily, when I called Justin (my hubby), he was coming home to eat lunch and was able to unload the groceries. The cognitive therapist is helping me realize that I have to schedule in "rest periods" so that I do not run myself down and keep having relapses. In all, things seem to be improving and I love physical therapy. I hope all of you are doing wonderfully! Thanks for all of your continued support!


Chiari Poem
(to the tune of the 12 Days of Christmas...)

On the first trip to the neurosurgeon my doctor gave to me the diagnosis of Chiari.

On the second trip to the neurosurgeon my doctor gave to me two cognitive tests, and the diagnosis of Chiari.

On the third trip to the neurosurgeon my doctor gave to me three MRIs, two cognitive tests and the diagnosis of Chiari.

On the fourth trip to the neurosurgeon my doctor gave to me four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On the fifth trip to the neurosurgeon my doctor gave to me five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On the sixth trip to the neurosurgeon my doctor gave to me six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On the seventh trip to the neurosurgeon my doctor gave to me seven times four surgical staples, six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On the eighth trip to the neurosurgeon my doctor gave to me pictures of my eight millimeter herniation, seven times four surgical staples, six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On my ninth trip to the neurosurgeon my doctor gave to me nine new prescriptions, pictures of my eight millimeter herniation, seven times four surgical staples, six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On my tenth trip to the neurosurgeon my doctor gave to me ten numb digits, nine

new prescriptions, pictures of my eight millimeter herniation, seven times four surgical staples, six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On the eleventh trip to my neurosurgeon my doctor gave to me eleven centimeter incision, ten numb digits, nine new prescriptions, pictures of my eight millimeter herniation, seven times four surgical staples, six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

On the twelfth trip to my neurosurgeon my doctor gave to me twelve weeks on sick leave, eleven centimeter incision, ten numb digits, nine new prescriptions, pictures of my eight millimeter herniation, seven times four surgical staples, six new symptoms, five days of hospital food, four iv needles, three MRIs, two cognitive tests and the diagnosis of Chiari.

Wayne Dyer blog

I have read an awesome article that has helped me imensly when I read it a while back and again this week. I have a new goal in 2011 and that is to work on having more peace in my heart. I have had many struggles in the last year with this awful neurological illness and need to work through them. Working on this one change, I believe can make a world of differnce. Wayne Dyer is a self-help guru that grew up as an orphan and now is helping countless others with his wise words. I think may help just about anyone that would take the time to read it. I read his blogs religiously. Below, is copied and pasted:




by Dr. Wayne Dyer

When you live at or below ordinary levels of awareness, you spend a great deal of time and energy finding opportunities to be offended. A news report, an economic downturn, a rude stranger, a fashion miscue, someone cursing, a sneeze, a black cloud, any cloud, an absence of clouds — just about anything will do if you're looking for an occasion to be offended. Along the extra mile, you'll never find anyone engaging in such absurdities. Become a person who refuses to be offended by any one, any thing, or any set of circumstances. If something takes place and you disapprove, by all means state what you feel from your heart; and if possible, work to eliminate it and then let it go.

Most people operate from the ego and really need to be right. So, When you encounter someone saying things that you find inappropriate, or when you know they're wrong, wrong, wrong, forget your need to be right and instead say, "You're right about that!" Those swords will end potential conflict and free you from being offended. Your desire is to be peaceful — not to be right, hurt, angry, or resentful. If you have enough faith in your own beliefs, you'll find that it's impossible to be offended by the beliefs and conduct of others.

Not being offended is a way of saying, "I have control over how I'm going to feel, and I choose to feel peaceful regardless of what I observe going on." When you feel offended, you're practicing judgment. You judge someone else to be stupid, insensitive, rude, arrogant, inconsiderate, or foolish, and then you find yourself upset and offended by their conduct. What you may not realize is that when you judge another person, you do not define them. You define yourself as someone who needs to judge others.Just as no one can define you with their judgments, neither do you have the privilege of defining others. When you stop judging and simply become an observer, you will know the inner peace I'm writing about here. With that sense of inner peace, you'll find yourself free of the negative energy of resentment, and you'll be able to live a life of contentment. A bonus is that you'll find that others are much more attracted to you. A peaceful person attracts peaceful energy.

Not being offended will mean eliminating all variations of the following sentence from your repertoire of available thoughts: "If only you were more like me, then I wouldn't have to be upset right now." You are the way you are, and so are those around you. Most likely they will never be just like you. So stop expecting those who are different to be what you think they should be. It's never going to happen.

It's your ego that demands that the world and all the people in it be as you think they should be. Your higher sacred self refuses to be anything but peaceful, and sees the world as it is, not as your ego would like it to be. When you respond with hatred to hate directed at you, you've become part of the problem, which is hatred, rather than part of the solution, which is love. Love is without resentment and readily offers forgiveness. Love and forgiveness will inspire you to work at what you are for, rather than what you are against. If you're against violence and hatred, you'll fight it with your own brand of violence and hatred. If you're for love and peace, you'll bring those energies to the presence of violence, and ultimately dissolve the hatred.

When Mother Teresa was asked to march against the war in Vietnam, she replied, "No, I won't but when you have a march for peace, I'll be there."

— Dr. Wayne Dyer

Double standard for stepmothers

Divorce is hard on everyone. First the loved ones that separated, then the children, then the extended family, and finally the step parents that come into the picture down the road. I have been a step child, my children have had step parent's, and finally I have become a step parent. And the hardest, so far, has been being the step parent.

"There is this double standard by which we suspect stepmothers of being wicked and selfish, yet expect them to be utterly selfless and loving to kids who are not their own, kids who are often hostile and rejecting for many years in spite of a stepmother's best efforts and intentions." Wednesday Martin, author of Stepmonster

No matter what you do, It is never good enough, you are never perfect enough, the gifts are never what they wanted, and so on.

My boys have step mothers that are probably not perfect either but I treat them as they are! I also encourage my boys to treat them with respect and love. When their step mothers buy them gifts, I call them and thank them. On mother's day, I make sure they give them a call. When it is their birthday, they get a call or a card. They are their "mother" in my absence. I respect them. They LOVE my children. If anything happened to me, they would gladly help raise MY CHILDREN! They would never take my place but they would help fill the emptiness that would be there. There is plenty of love to go around. More than one woman can love your children. Why is that such a hard concept for some to learn? Is it jealousy? Is it fear that someone will take your place? I have no intentions of taking any ones place. However, when the children are in my home, I do cook, clean, make them do chores, make them brush their teeth, make them obey the rules. If this makes me some horrible, evil human being, so be it. But I refuse to be disrespected.


"It is important that for wives and ex-wives to realize that you don't have to be the arch rival or best friend with each other. There is a middle ground and often times that's the safest position to be in." Kela Price

"Making sure the kids suffer the least amount of damage possible and that includes their stability in both households (chores and creating and/or maintaining relationships with all parents) truly takes ALL parents. also decreases the children's chances of using any "divide and conquer" strategies against their parents. When parents present a unified front, that child has boundaries and more importantly, he or she realizes that EVERYONE is working together for their best interest." Kela Price

In my life, I have had many trials and tribulations but have NEVER had any problems getting along with others. Heck, I still have the same friends from junior high and high school. My siblings and I have never even had an argument, as adults. It is not in me to fight or argue and takes much to probe me to that point. I have done nothing but love and respect my stepchildren and children and plan to continue on the same path. I am greatly saddened that someone may think otherwise but I will continue on just as I have but will not continue to be any ones verbal punching bag in 2011.

‎"Stepmothers, I urge you to take your power back. Your husband's divorce was not your fault and it isn't your responsibility to fix. You can be understanding and supportive without being every one's punching bag." Kela Price