The Spoon Theory written by Christine Miserandino

 

Please take the time to read Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability.

Click HERE to download “The Spoon Theory” in PDF format.

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.

Cartoon image of Christine Miserandino holding a spoon
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

*We have English, Spanish, French and Hebrew translations of “The Spoon Theory” available.

You may NOT publish or re-print this article without the written permission of Christine Miserandino and ButYouDontLookSick.com. Thank you.

Now you can purchase small and large poster prints of “The Spoon Theory” from our Online Store! These posters will make a perfect “get well gift, or friendship/ I understand gift.” We also think it would make a perfect addition to any doctor’s office, or support group meeting room.

The Spoon Theory Large Poster – $22.99

The Spoon Theory Small Poster – $18.99

Most importantly, get one for yourself!

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  • Rose

    Thank you so much for this. My daughter, who has RSD, found this and posted it thru Facebook and said: “this is my life”. It is a straightforward, poignant explanation of what life is like for someone who suffers from an autoimmune or degenerative disorder, and is a clarion call for the rest of us to use “our spoons” wisely and to not judge those who must ration theirs.

    God Bless.

  • Ange

    Thank you, thank you so much for this. I wish my coworkers would read this so they would understand how it is to be me. I had an incident this winter where by the time I drove to the market I didn’t have enough spoons to walk to the motorized cart. And it drove home the fact that I can’t even always plan my spoons by the day, sometimes it’s hour by hour.

  • Sandy

    Wow! Thank you so much for your insightful information. I am going to share the ‘spoons’ with my friends. My wife has just been diagnosed with ALS and each day she has one less ‘spoon’ to give up. Not only has she less ‘spoons’ but less days . . . That is all I can say.

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  • thank you christine ..one of my group members sent me your link ..so very relevent to our group and what we do thank you hugs aunty jane xxxx

  • Carlene

    Thank You sooo very much for this,..I have lived with Crohn’s Disease for 20 + yrs..I can’t remember the times someone has said to me but you don’t look sick..

  • Kathryn McIntyre

    What a beautiful way to explain an illness that is unseen by the world! I have Mal de Debarquement (not even heard of by most GP’s) and we look perfectly normal to the rest of the world, while our brains are bouncing up and down or back and forth.
    So very many things cost ‘spoons’ – things I took for granted.
    I have posted this to my facebook page in the hope others will see and appreciate your insight.
    Thank you!!

  • kim gibson

    God bless you so much!!! I have never read anything that makes more sense in my whole life or a better way to tell people about the disease in a way that people can actually understand.I am going to try and tell everyone I know about this ! Thank you anf god belss!

  • You have done an incredible job of making life living with a chronic condition more understandable to the healthy individual that is willing to listen. I have been dx with Fibromyalgia maybe 20 years ago. Tack on a list of other often related illnesses including multiple dx for spine. I do not have a day that I would consider normal. Looking back I remember feeling different, frail even when young. I could not do all that I wanted to do, ever. If I pushed, I would pay. Exhaustion. sadness, fear. I learned how to pace, and not go when I wanted to so badly because I knew there was not enough in me to get back home.. Thank you very much for writing this. Someone recently asked me why I mention my illness on FB…did I want sympathy. It cut like a knife. I’d like others to understand how it is for their loved one and also how the person with the illness can see what they need to do to get through one day, then another. Bless you.

  • Laurie

    I cannot thank you enough for this wonderful story. An acquaintance sent it to me after she read it and finally “understood” what I am going through. I have Fibromyalgia and Psoriatic Arthiritis and have suffered for 14 years. I now have a tool to help people “see” what cannot be seen from the outside. For that I am truly grateful.

    Blessings!
    Laurie

  • Faith

    Hi. My name is Faith. I’m 17 years old. This really changed the way I look at all diseases and Lupus in particular because my mom has it. She was just diagnosed a few days ago. I didn’t really understand what it was till my 32 year old sister and I looked it up. I still didn’t really understand because I DIDN’T WANT to understand. I didn’t understand because I didnt want my momma to have anything wrong with her. And when I read your story I understood. I don’t know what it feels like to live with Lupus, but at least I have a heads up about how my mom feels and what my whole family will be dealing with. I do admit that I am really scared. I mean I don’t wanna lose my momma at 17 years old. Gosh I’m still in high school. I don’t wanna lose my momma, period! But this story really put an impact on my life and I’m pretty sure that it affected everyone else who has read your amazing story. But thank you so much for writing this. It turned my whole world around. And may God Bless you.

  • Wow. This just took my breath away. I spend 16 years dealing with Chronic Fatigue Syndrome and fibromyalgia, and tried to explain this so many time, without success. Even now, I still have to count my spoons carefully, although I have more than I used to.
    Thank you!

  • Missy

    I know this will be a lot of the same but thank you so much for posting this. My friend put up this link on her Facebook and it definitely hit home. I have fibromyalgia and reactive arthritis and have since I was in high school. I am now 30 and it is so hard to not get to go out and do all of these things my friends are doing. They understand to a point but have just given up even inviting me anymore. Thank you again for your wonderful insight. I want to print this page up and just hand it to people that do not understand.

  • Thank you. Thank you, thank you, thank you! I have fibromyalgia, and am going to share this article with everyone who just doesn’t “get it.”

  • Sarah

    Thank you for this, I too have heard about it, but have just read it in full. I have a little boy with Elhers – Danlos Syndrome who no one understands when we say he is in pain every day and finds all of life a struggle. I’m going to quote this to his school, maybe then they will grasp this and see how tough it can be.

  • Becci

    Sorry for previous post lost plot.
    Hi I thankyou for this i will be showing it to a very close friend of mine whose daughter has been diagnosed with Fredericks ataxia, basically a degenerative disease with no cure I hope she will pass this on to the people who do not understand. Made me understand more and for that i am grateful

  • Becci

    Hi I thankyou for this i will be showing it to a very close friend of mine whose daughter has been diagnosed with fredricks ataxia, basically a digenaratative

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  • davee

    Thank you so much for this story. I have been battling diabetes, congestive heart failure, kidney failure and extreme anemia for a number of years and this story puts it in true perspective. Until I got sick, it was hard to imagine what somebody went through on a daily basis just to get through the day. I lament the days when I had the energy to do whatever I wanted.

    These days, doing anything out of the ordinary requires planning. Is there a hospital within 30-40 miles? Is there there a bathroom within a few minutes travel? Do we need to pack food? Is there a pharmacy to get emergency meds should we lose our normal supply? Do you have your pacemaker card (needed to avoid metal detectors which always set them off)

    Most days, I can get through the day without too much difficulty. Other days, it seems like an Olympic struggle just to get through the day. There are no days without pain, no days without discomfort and almost never a chance to forget that you are living with a number of terminal illnesses. It’s easy enough to hide from most others, but it’s impossible to hid from yourself or your spouse, who may not know the full measure of what is happening to you but they know you are suffering.

    I cried a bit when I read this story but am glad to have found a way of explaining it to others.

    Thank you

  • Kaatje

    Today after six years of doubt I have been diagnosed with fibromalgia and EDS. I have been trying to explain “how I feel” for years now and I never truelly was able to do so. I love this text because it not only shows the negatives but also the positives about being sick, you can’t apreciate the good days without having bad ones and some people get cheated out of a true life experience by only seeing the good so in a way it’s a blessing and a curse. Thank you for sharing this I will surely tell it on.

  • Heather

    This story is amazing. I’m going to use it to explain to my students, co-workers, friends, and extended family. I just went on a European tour with a group of students. I choose to sleep on the bus every opportunity we got. This meant that I missed the scenery, card games, and so on. Napping gave me an extra spoon so I could walk through “sleeping beauty’s” castle. Napping on the train to Paris gave me a couple of spoons so I could cry at the Rose windows in Notre Dame and see Paris from the top of the Eiffel Tower. I love spoon theory!

  • Alice

    Thank you so much, Christine, for voicing what I’ve wanted to say. As a young adult with lupus (I’m not suffering from lupus- I just have it), I feel like your spoon theory finally gave me a way to say what I’ve been dying to say for 3 years. Thank you so much again, Christine. Just thank you. And thank you.

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  • Robin Spencer-Laurie

    I kept seeing this “spoon theory” mentioned on comments and just read this. I cried. How true it all is. I have had RA since 2 years old and am now 50. Have had my own business since I was 30 and just sold it. I have not been able to be at work since the fall and have dislocated my hip 3 times since March and am now schedued for hip revision surgery. Some days are better than others and I am so looking forward to recovery from surgery and back to physical therapy so I can start walking “normally” again and try to get some of my life back.

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  • After 34 years as an ER nurse, I was assaulted by a cracked out parole violating felon and left with a severe neck injury and pinched nerves. Thank you for your explanation of how I can try to get through the day.

  • Reading this was like finally somebody gets it. Someone does understand and care. I have crohns, total coloectomy with end ileostomy, Interstitial Cystitis, and Deficiency C and S a blood clotting disorder. Most days just taking a shower uses all my spoons but I have to push and move on because after that I have to change the ileostomy with a new one, then catherize myself and instill meds into my bladder to control the pain and the intense fire that burns inside. I try to drink something to take all my meds with I am never hungry so I have to make myself eat most of the time I skip the food because then I skip the horrible pain that comes once you eat it. I don’t even like to eat anymore because I know the pain is coming. Any disability takes away little bits of you and then takes away parts of your ability to be you then you lose who you are and you become the illness. You have to take your life back a piece at a time as it was taken from you and find yourself again and be happy.

  • Jeni

    Thank you!!! I am a Type 1 Diabetic and this is the best description of how I live my life. I have shared it often.
    Thanks again!!
    Much love on your journey.

    Jeni

  • Jake

    Thank you….I can’t explaine what I am going through, but I can say this story helped me tremendously…thank you again

  • thanks for the spoons i need extra ones everyday very good why to explain what a person with lupus goes through from minute to minute secocnd to second and hour by hour it take that time and some more. I will use this and see if it will help friends and family understand whats going on with me. thank you again

  • As an over-achiever, always-on-the-run person, getting the diagnosis of Lupus and Mixed Connective Tissue Disease was both a relief and distresing. A somewhat cruel joke for someone that has dedicated their life to caring for acute and critically ill people. I appreciate the spoon theory and completely relate to idea of spoons! Thank you for sharing this and giving us a very creative way to explain life with Lupus!

  • Eric Fink

    As a person who has suffered with chronic back pain as well as degenerative knee desise i well know the effort it takes to continue living day to day. For many years i used an OTC pain reliever because my doctors would not give me pain medicine because of their fears of addiction. Unfortunately i discovered last year that the pills had done permanent damage to my kidneys. The only good thing to come out of it was my PCP finally giving i n and prescribing the meds i needed to endure. I still work full time on my feet and support my wife who is disabled but every day is a struggle and i cant count the nights when the pain brings tears to my eyes. Thank you for this analogy, i will use it to help me overcome the ignorance of my extended family who still insist that the pain is temporary and that they had just the same pain and i got over it, so will you. Bless you and keep up the struggle.

  • Kim Minicuci

    I love this!!! My daughter was diagnosed with Lupus Nephritis in March 2010 and is having quite a time with things. The spoon theory helped me understand her and I think it will help understand herself!!!!

  • This is perfect! I have been diagnosed with fibromyalgia since 2002 at the age of 26. It has affected my work (lost several jobs due to “poor work performance”), my ability to obtain my college degree (been in college off and on since 1995) and has impacted my relationships with friends/children/family and my partners in the past. It affects my mood, all physical aspects of my life and my ability to obtain and keep a job. Some just call me lazy without knowing the whole story. Many judge. I have been told more times than I can recall that I wouldn’t need a disabled placard for my vehicle if I would “just lose weight”.

    At the age of 33, I have had to move myself and my preschool aged children back home with my father to start over again. I am hoping I can get a better start.

  • Carolann

    Thank you for giving me a way to explain my health issues to my special needs daughter.

  • Thank you for your wonderful way of explaining how it feels to be chronically ill and not look it. I have RA and for the last 10 years it has been very aggressive… in invisible ways and there in lies the problem solved by your analogy. There are times I wish whoever named RA had not included Arthritis because most people don’t know the difference between it and osteoarthritis.

    I’ve been lucky in recent weeks to have more spoons and I know I still need to pace their use because tomorrow I may not be able to walk. Never mind that the meds we take also take a toll on our bodies with not to nice side effects.

    One thing that helped me was to see my way of living as a gift because I get to focus on each moment of each day and not waste time on tomorrow.

    Anyway I noticed you had a link back to my blog and I wanted to thank you for that as well.

    May you have more and more spoons.

  • Mary Lamoray

    What a fantastic analogy!! For awhile I had a blog called ‘Living With Walls’ (flourishing within the walls of Multiple Sclerosis) I used walls instead of spoons (although the spoon analogy is perfect for us too 🙂 because everything you do brings you face to face with a wall… and unfortunately I had to recently shut down the blog and other things I was doing because the cost in ‘spoons’ became just too expensive! I miss it but also relieved that I’m not paying the high price anymore 🙂 Big hugs to you and all who struggle through every day…

  • Thank you for this!!! I have been living with Lupus for the past 12 years,Finally an Analogy that can be grasped with both hands (without, losing a spoon) might I add. I am still fighting back the tears!!! In and Out of the hospital has been quite a feat and explaining to everyone I know from my job, to my friends, and especially family members WHY, HOW, and WHAT it feels like to live with this disease???? More people need to read this, and I am going to make sure it is. Blessing to you on your journey in life ALOHA FROM HAWAII and WISHING FOR MORE SPOONS FOR YOU AND I, Shailee Couch

  • Lyone

    This was Great! I have fibro and chronic fatigue and most people just do not get it–not even so many of the health care givers,etc. this is a perfect analogy. You were so brilliant to think this up. I am going to try this one on my thrapist and see if it works.

  • Heather

    Thank you for sharing your story with the world. I feel like you have finally given a voice to all of us who suffer and still manage to live with chronic illness and pain/debilitation.

    It is amazing to finally find a simple and practical way to describe what it feels like to be chronically ill and live with pain and debilitation all the time. I love the way you showed how the simple things, like getting out of bed, showering and then getting dressed can often be the most difficult, exhausting and heartwrenching things a person like us can do in a day.

    I must admit on a bad day like today it is “taking a spoon” to sit here and read and respond but I felt that I had to share my gratitude that you have published this and truly found a way for us to explain “a day in the life”. Blessings to you and all who find their way here.

  • Cari

    Reading this made today the first day that I kind of understood chronic illnesses and how they affect people. I needed to read this.

  • Missie

    As I sit here with my eyes filled with tears I must say thank you being a quote on quote sick person myself it’s nice to see someone else understand how hard it is to explain to a healthy person how it is to be sick. I myself try everyday to life a normal life even on those days when I want to totally throw in the towel and give up. My big thing is or question I get is how do I deal so well and truth be told on the outside I try but inside It’s so hard I struggle on a daily basis with it myself nevermind trying to get anyone else to understand. So again I must say thank you very much….Missie

  • RoseWolf

    Thank you. Simply… Thank you. I have retweeted this page and posted it to my facebook. I know this will help my friends and loved ones understand a bit better what I live with every day.

    p.s. The simplicity of this made me cry tears of relief and connection. Thank you again.

  • Alexia

    I cried when I read this. I’m 17 and had been wasting my life. I saw no point in life. I have this idea that when it all ends, nothing remains. Nothing matters.

    But reading this had made me see a different light. It hurts seeing how you struggle with your life and I am here wasting mine. I’m really glad i stumbledupon this. And I feel like I am ready to move on from wasting my life and start leaving a meaningful life.

    Thank you so much for sharing this, really! And may God Bless you!

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  • DolphinArtist67

    I’ve heard of your story many times, but this is the first time I’ve taken the time to read it. Thank you so much for having the thoughtfulness and imagination to create this fantastic description of a day in the life of the person who suffers from a chronic condition. You are a woman to be admired!

  • Thank you. I have no idea how to explain how I feel and this really helped me understand it for myself.

  • niiki

    Christine, I learned of the “Spoon Theory” after reading some blogs on a site for spinal and back injuries. I, myself have spent the last 15 years living with a condition known as degenerative disk disease, spinal stenosis, severe nerve damage (neuropathy) in my legs & feet, I also have arthritis in my back, hips and knees as a result of my back injuries. I am 33 years old, and recently had an episode of momentary paralysis, the only way to correct this problem, and hopefully stop it from reaccuring is to have another surgery… My 3rd in 4 years!
    I have spent the last 5 years (that’s when evrything got really bad, I WAS living a “normal life” up till september of 2005) I have spent too much time trying to explain to family n friends that the “normal” day to day chores can leave me completely exhausted and in extreme pain! If I don’t take breaks to rest, I physically can not complete everything that needs to be done! I have 2 children, who have not only helped me, but kept me strong. It pains me to know they have had to grow up watching their mom suffer, crying infront of them is heart wrenching…
    But I am sure you know, the pain can be intolerable and the tears just flow! I am all they have, and they are all I have! I am thankful everyday for their strength and resilience!
    I have sent out a message to all my family n friends giving them the link to this page, if it helps even one of them to better understand what I’ve tried time & time to explain…
    I thank you endlessly!!!!

  • Stacy J

    Thank you. Thank you for making me cry. Thank you for making me laugh. Just thank you for giving my husband a way to explain how his life is – this made it so real even for me who’d been his caregiver and really thought I did understand. He just kept nodding as I read this to him… I shared this on Facebook so my friends and my family can understand too. Again – thank you Christine for sharing such an intimate part of your life…