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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  • Karol Ruth Silverstein

    Thanks!

  • lagibby

    Good luck with the book!

  • yasmin H.

    This explanation made me realize it is okay to not do some things (even things I enjoy doing) on days I feel weak or too much in pain. Before that I felt ‘lazy’, ‘a procrastinator’ and very frustrated with myself because of that.

  • Autumn Hays

    This explains how I feel every day. This how I’m going to explain it to my husband. He doesn’t quite understand because we don’t have insurance or the money for me to go and get diagnosed properly, and believes heavily in mind over body. Thank you for putting this out there for people who struggle everyday to explain to loved ones what going on in their mind and body.

  • DeAnna Anderson

    Oh my goodness! This is the best explanation I have ever heard. Thank you so much. I have multiple sclerosis and this is everyday spooning for me. I have always thought about energy levels. I have energy to do this, but not that and if I do #1 I won’t be able to do #4, etc. The other thing is when people say “but you look so great!” Ugh! Just because you look good (or not in pain) on the outside doesn’t mean all is well on the inside. I have cane days and I have walker days and I have days when the grocery store does not have a riding cart charged and I can’t get groceries that day because there is no way I can walk the store on my own.

  • Elizabeth Bianchini

    This is an absolutely perfect and beautifully written description of the invisible illnesses. Thank you.

  • Kelly Quinn

    I have never seen an explanation that laid out so well what it is to be sick all the time. I have two autoimmune diseases, they don’t even know what the second one is but it causes chronic pain, and that’s my life. I’m only 30, I have two kids and a soldier for a husband so when he deploys or just goes away for a few weeks, I have to count my spoons in the morning, mid-morning, lunchtime, when I grab my kids from the bus, i’m usually running out of spoons by the time its time to make dinner though thankfully my children are old enough to help out with chores such as dishes, the trash, etc. But I’ve never seen this explained so well for those of us who are sick, various sicknesses but each with its own countdown on what you’re going to be able to do today. I’m so very grateful I found this and I plan to share it on Facebook because I have a friend on there that would be grateful for this explanation as well. We both have each other and we’re lucky in that, because we can complain about doctors, health insurance, chronic pain, feeling guilty when someone else(namely our spouses) are doing everything when they’re home because they know or have at least an understanding of how many spoons we have by the time they get home. I will eventually buy the poster, I’m happy you have it on sale because this is the best explanation I’ve ever seen. You’ll never know how grateful I am that you found a way to explain this. But I am exceedingly grateful. I’ve tried to explain all this before to my healthy friends who are sympathetic but don’t understand, and they try to, I know they do, and this says it in a way I never could have found the words to express without sounding self-pitying or angry and let’s be honest, we all have those days but they’re the worst days to try and explain your life. Thank you again for this.

  • SadiesMer

    Thank you for this wonderful story, it really helps me understand what my mom is going through. I understand now and also feel like I should enjoy what I have.

  • Myranda Miller

    My friend, you are not alone. Many of us suffer from similar problems with doctors being assholes and people being jerks and no one believing that one pivotal moment in your life fucked you up. I’m there. Don’t give up, bud. There’s good people out there and they may be hard to find but we’re there and we want you to fight. Don’t give in.

  • Sarah Fawcett Kangas

    I share this as much as possible to explain what it’s like to be in chronic pain. There are times that I’ve dropped all my spoons making coffee in the morning. 🙁

  • OK_Meat

    What you have there is a very, very cool and understanding friend. I almost don’t believe it as being “true”. Don’t get me wrong – this is a wonderful parable and should be required reading for everyone; the message is as good as or better than anything I’ve read in any religious text. I have met a few people that are that sympathetic/empathetic/compassionate so far, but they have all been professionals that deal with such disabling conditions for a living and have seen enough people that “don’t look sick”, but really are, that they truly could pay attention long enough AND understand the metaphor in such a situation. My experience has been that people by and large are cold, selfish, and – even if they were to sit through the whole spoon explanation and DO understand it – decide “Wow. That’s too much to deal with…sorry I asked….by the way…I’m thinking you should get well before we hang out anymore, you know, because I care and don’t want to add any stress to your situation….”. Hell. I’m unfortunately of this first stupid generation that is inclined to take one look at this beautiful story and say, “TLDR; get a job and stop faking loser LOL call me when ur fun again.” Seriously. I have become so jaded and bitter and inherently distrusting of human beings – friends and family included – since this crap mix of symptoms/disease/whatever the hell the powers that be decide it is, that I don’t even bother to try to make new friends. In other words, I effing hate most humans. I was fun. I WAS ambitious and had great prospects for my future…I was popular, played in a rock band, was right at the start of fulfilling my dreams without a cloud in sight and then BAM! And no one effing believes it. Docs accused me of seeking drugs, saying I was “too young to have those symptoms” or have sent me to specialists that essentially say the same thing and (now) tell me to lose weight and use ice for pain. Nevermind that not three years ago, I was still in decent shape as I’d been athletic and mostly healthy from birth until the pain got so bad that I just had to stop playing sports…then couldn’t run….then couldn’t lift weights or use a punching bag…. and after almost a decade of being sedentary, wow, holy crap! I’m a fat bastard! Must be that I’m just lazy. Because, you know, I totally want to spend what should be the peak of my life both career-wise and physically laid up, farting into the same couch cushions with ice packs on whatever parts hurt that day, waking up screaming in pain and drowning myself in booze to kill the pain because – well – frankly, I’ve given up on life and the prospect of any doc really giving me good healthcare until I am in a hospital dying by the age of 40. Seriously. I wish you all the best, and I am so happy you have this wonderful friend, and hope she still is around.

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  • Jess

    This was a life changing read for me. It really made explaining some of the difficulties of chronic illness so much easier in a way people truly seem to grasp. I even ended up mentioning this article in an intro to my own blog, as I’ve become so accustomed to explaining my illness in terms of “spoons.” Thank you SO much for sharing this!

    http://www.tobellyandbeyond.com/#!about-our-family/s8vsq

  • cheyenne sheppard

    You said that young people dont have to warry about limted problem but it is not true young pople have disablities too so please understand that young people get sick young people have brain problems such as wheelchaird bound young people or young kids or older kids can have tramatic brain ingeries and have too learn this the too not just older people with roumatoid arthritis young people get this too. so please be educated about young people with disablities.

  • Simplest thing is just to start out assuming you only have one or two and figuring out your priorities from there. If you still have energy after the top priority, you can move to number two (bearing in mind it is always a good idea to conserve for the inevitable emergency). Possibly not much help, but consider if you are more comfortable sitting or moving about conducting your business. If you feel like you are fading that is a signal that you need to rest. And, yes, life style WILL be altered as we age, even if we are not spoonies.

  • devanjames

    Does anyone know how to calculate how many spoons a sufferer gets at the beginning of the day? For me, some days it feels like 2, then other days feels like 10. There probably is not an easy answer for this, and I’m new at it. I have suffered with PTSD for most of my life, and at 69 years old, I don’t look ill, but I have chronic pain and chronic exhaustion that never goes away these days. It has come to the point where my life style is being altered. I still have an active life and a business to run. I feel like I am fading.

  • Jj Dunlap

    JJ I took care of my sister Dee and i watched her everyday until the day she pasted away. I remember telling her one day my sissy this is so hard on you i understand so very well. It almost kills me to see you like this ,but my love one day I will be left all alone with all of these memories as bad as they are,I’ll try to remember the good ones because that is all i will have when you are gone. Believe me that is all I have because I have no one to be with me to even listen to my story about my time and my heartache about my sister Dee that I love and miss so very much. It is not easy to watch someone you love slip away from you and to know that you will soon lose them forever.

  • Clair

    I kept seeing spoons everywhere on RA and fibromyalgia awareness jewelry. So I had to google this, because I had not heard about this before. This piece is so incredibly moving. I can’t stop crying. I sent it to my mom who quit caring a long time ago, about the nature of things in my life. I also deal with several mental disabilities as well.

    I just am so moved by this. That’s really all I can say, and thank you for writing this. It’s really incredible. I don’t really have anyone left in my life, but in the future, anyone I meet who I do become involved in some way, I definitely will share this incredible piece with.

  • Vaermina

    I have been dealing with narcolepsy for seven years and when I read this and remembered the missing opportunities, constant choices and how I was before, I couldn’t help but cry a bit. Some people around me know my condition, however it’s not familiar to them. People always mistake me for being lazy or depressed. I tried to explain so many people, so many times but wasn’t able to find a way to make them relate until now. If you let me, I’d like to translate Christine’s experience into Turkish. So more people will benefit from it.

  • OLIVIA DE JAVELINA

    HI PATTY,

    SORRY IT TOOK SO LONG FOR MY REPLY. IT HAS BEEN A DIFFICULT SPRING AND NOW THE MONSOONS ARE UPON US WITH ALL THE BAROMETRIC CHANGES AND RAIN WHICH JUST INCREASE THE PAIN. I HAVE BEEN RUNNING ON A “SPOON DEFICIT” FOR TOO LONG.

    I LOVE THE ANALOGY AND MANY TIMES IT HELPS, ANOTHER TECHNIQUE I USE IS TO LIKEN IT TO A BANK ACCOUNT. ONE CANNOT MAKE WITHDRAWALS EXCEEDING THE EXISTING BALANCE WITHOUT INCURRING SUBSTANTIAL PENALTIES. NOT MUCH DIFFERENCE!

    I TOO USE MANY PROPPING PILLOWS, THAT IS VERY HELPFUL. BECAUSE I CANNOT TOLERATE FRAGRANCES AND CHEMICALS USED BY SO MANY, I AM HOUSEBOUND AND WITH THE EDS AND CRPS AM NOT ABLE TO CARE FOR MYSELF PROPERLY AND THOUGH I HAVE GOOD INSURANCE UNDER MEDICARE ADVANTAGE, I NEEDED LONG TERM CARE AND USED ALL MY SAVINGS ON OOP MEDICAL SO NEEDED MEDICAID WHICH WILL NOT BOTHER TO HELP ME FIND CAREGIVERS THAT WILL NOT MAKE ME SICKER AND INCREASE MY FALL RISK, SINCE WE LAST CORRESPONDED I HAVE SPONTANEOUSLY BROKEN 4 TOES JUST TRYING TO WALK, AND NOW A LARGE HERNIA SO CAN’T LIFT OR REACH WITHOUT MAKING IT WORSE, LEAVING ME BEDBOUND. MY NECK FEELS AND SOUND LIKE THE RICE KRISPIE BROTHERS HAVE TAKEN UP RESIDENCE, MY EYES ARE VERY COMPROMISED FROM THE EDS AND INCREASE THE FALL RISK, SO THAT LED INTO A LEGAL BATTLE WITH THE STATE, AGAIN LOSING MORE SPOONS. I WON BUT STILL NO HELP SO BACK TO THE ATTORNEY. UGH.

    AH, THAT BEAUTIFUL ASIAN SKIN, MY EX WAS CHINESE/SOUTH AMERICAN AND WAS AGING VERY WELL AT 65 SHE LOOKED NOT A DAY OVER 50!

    LIKE YOU, IT IS IMPORTANT TO SURROUND ONE’S SELF WITH POSITIVE, NON JUDGMENTAL PEOPLE WHO LISTEN AND HELP WHEN NEEDED, INSTEAD OF TRYING TO DECIDE FOR ME WHAT IS BEST, OR THINK FOR ME, AND PURGING THE TOXIC RELATIONSHIPS AS NECESSARY. I SURE DON’T WANT PITY, BUT HAVE LEARNED THAT IF I DON’T SHARE THESE PARTS OF ME, I AM NOT LIVING AN AUTHENTIC LIFE AND ALSO DEPRIVE OTHERS OF LEARNING THE LESSONS OF BEING ‘DIFFERENTLY-ABLED.

    I HOPE THIS FINDS YOU DOING AS WELL AS YOU CAN, AND WISH YOU THE BEST GOING FORWARD.

    BLESSINGS,

    OLIVIA

  • LadyDuffy

    Thank you Christine Miserandino. Be Blessed.

  • alx

    thank you for sharing your story. This is exactly what I been going through. couldn’t explain to friends and family what I was going through. Hell I didn’t even understand it myself. it has been a long road of figuring out and accepting how to live with lupus. making changes and adjustments every day, learning not to do and just doing one thing whenever able. my doctor always tells me to celebrate the good days and don’t sweat the bad days. learning not to take care of things and letting go, accepting that I’m not the same person I used to be, that my brain is running ahead of the rest of my body has been challenging. Understanding that I’m not stupid or dumb, that I’m not losing my mind, just that my body is responding differently because it’s adjusting to a new situation; that’s been extremely difficult to accept. Every day starts with a mental process of “I have to pace myself, or today is different from yesterday.” My brain reminds me of how it “used to be” and the rest of me is saying, “not happening, forget about it.” Today is one of those days and I can’t change it, I accept it.

  • Go to the top of the article and click on the Facebook button.

  • Rochelle Ann Baker

    How do I share this on FB?

  • Jen

    Wow. This is perfect and sums up everything i have felt over the last 18 months since my first doctors appointment because “i know i’m not right and dont know why” to getting diagnosed with ME/CFS in october and during the few hospital appointments i’ve had since that throw around terms like ‘pacing’ and ”payback’ that i just cant get my head round let alone try and explain to family and friends. I’ve had countless crying episodes because no matter how much i try and plan out my day or want to do things i cant simply make myself an god help if I do what I used to do and just power through because ive got to put up with then dragging myself around like ive got weights attached to my limbs and just nod along to conversations not really hearing anything. I’d heard internet support groups/blogs talk of spoons and being a spoonie and not really understood why it was until i read this. This might just finally be the bit of info that helps people understand. Thankyou so much.

  • Karol Ruth Silverstein

    Wow….this was so awesome to read! I’ve had JRA for 39 years, and I have a dear friend who’s super spontaneous and used to always invite me to do things last minute. We laugh about it now (now that I’ve schooled him a bit). I’m sending him a link to this post for sure! I’m a children’s book writer and have written a YA novel about a 13 year old who gets sick (out on submission now via my agent). I have many friends (fellow writers and others) who are big fans of the manuscript, and the thing they find most remarkable about it is how it gives the reader a first person POV experience of living with daily pain and limitations. It touches on many of the things discussed here, except instead of work, it’s Junior High {{shudder}}. Look for #CURSEDthenovel (hopefully) in a couple years. Thanks SO much for writing this!

  • Kelly Garrard

    Big thumbs up here ???? I have lupus sle, epilepsy and various other conditions…I may not look sick…but I look so awful at the moment someone called me a druggie I looked so rough ???? amazing article…I must show this to my family and friends…they might then understand why I need to rest and why I can’t charge around like them

  • Cannylou

    Amen to that! You have to grieve the loss of the old you. Realizing that now your illness has forever changed who you were. And having people around who have seen what you used to be able to do are often puzzled at why you can’t just “suck it up “! *Big sigh!

  • Manchester Flik Chik

    I thought this was the perfect metaphor for a chronic Illness (I have MS) but then I thought the more tasks I cram into a day, the quicker I get tired and so my once numerous spoons run out quicker. Melting spoons maybe? lol

  • Mastocytosis club here. As I’m sitting here healing from my latest bone marrow biopsy I see now that all my spoons were taken from me this week. It has been five days of hell trying to get all my spoons back and it feels like as my disease progresses I permanently lose more spoons than I was ready to part with. Spoons I didn’t realize I even had. Spoons I knew I had but took for granted. Damn, I miss my spoons. 🙁

  • Debbie Taylor

    thank you Christine this is put so straightforward and simply I have a vestibular (inner ear) disorder so chronic vertigo and balance issues as well as fatigue and confusion if I push myself past my limits. Once I was superfit and active able to do whatever I set my mind too especially in the outside world but then the vertigo and dizziness started a rollercoaster of emotions thinking was it a brain tumor Multiple Sclerosis or what was it. The spoon theory explains my day to day struggle so well. I will trade of one activity so I can do another one. Or ensure that I have days free prior to working to ensure Im not too tired to do so and then another few days to recuperate. Thus I only work 1 day a fortnight these days had to drop studies for a bit because I cant study and work at the same time. A constant invisible struggle that you cant reallyLike I said thankyou Christine

  • sher

    Thanks from the bottom of my heart that someone really understands mental illness such as depression as a physical illness as well as mental. As you put it so well, some days are filled with fight,fight and fight and seem to never end.

  • Gina S

    I do understand. It is awful. Was in the hospital twice in April.
    It is a horrible feeling of not being in control when you know your body and medications better than the Nurse/Doctors.

  • Keith Greig

    13 years ( December 19th 2003, 11:30am ) of intensive pain taking lots of medication including a minimum of 240 mgs of morphine everyday. As my wife says, “that my neck broke”, it is slightly metaphorical, but there is some truth in it. The specialists that I saw all said that my neck purged itself of 2 discs and the resulting actions severed and/or crushed nerve fibres. At the same time my lumbar region was severely damaged but luckily the discs were only squeezed out of place. The self repair in the lumbar region was a basically a mass of fat, fibre and other body ‘filler’ which, in itself, stopped any further damaged on the spine. The nerve fibre in the hip/pelvis was damaged but not severed. Pain was unbearable 24/7 and it got worse, so much so I was signed off work, indefinitely.
    That was a real blow as I had always loved working. I had always been a good worker and travelled nationally and internationally repairing, overhauling and representing the company. I am a certified and qualified Mechanical Engineer and I loved my job, as it gave me freedom and responsibility while in the facility to ensure the smooth running of the product quality. I needed to be at work for my mental health but my physical health needed repairing.
    Then after several surgeries, ultrasound, CT, MRI scans, x-rays and 1 years worth of intensive physiotherapy, acupuncture, hydrotherapy, 1 on 1, twice a week, gym work with a top sport therapist, the result was in. I would never work again. My field of view went from the world down to looking out on the world through a window in the lounge. Depression sets in, but strangely from seeing a doctor once a year at the most for 30 years, and then seeing them at least once a week.
    I had 4 anaphylactic episodes of which 3 were very serious and needed self administration of epipen ( hurts ), an ambulance, emergency treatment and admitting to hospital. Then a few bouts of kidney stones which also needed ambulance with lights and sirens. I was hospitalised again. It was then a severe bout of cellulitis which took 5 weeks of stronger and stronger antibiotics to go. This has left me with ugly stained lower legs but I am grateful that I did not need amputation as the doctor was thinking. Type 2 diabetes is the newest ailment to curse my life. I do have a wicked sense of humour to the extent that often I see humour in something that other people are serious observers, except me who is giggling like a loon. Despite all the pills, potions and medication I still have chronic pain for part of the day and then pain in the places where before it was worse. I have also developed an irritating uncontrollable ‘spasm’ in all 4 limbs, mostly affecting the arms. I can be sat down watching a movie, drawing , painting ( mostly watercolour ) and then my arm will shoot out all by itself. My arm shooting out when holding a cup of tea or coffee, a glass of water or sugar free cordial, will and has wiped out 2 expensive laptops, several works of art ( or attempted works of art ). Twice I have hit myself in the genitals, not a bright thing to do. I kicked out once while barefooted and my right foot connected with a metal frame on my desk, if only it was my left foot where my toes are numb. In a nutshell, life holds out little hope of improving as the specialist have said that the bones are slowly deteriorating. Thirteen years out of work can only lead to a life on the poverty line. My wife is my carer as I do fall over a lot and I get confused easily on some days. Never being able to have an annual holiday to renew the batteries that are drained quicker than they can charge is very depressing for all the family. Sadly to say that my mental condition is deteriorating possibly quicker than my physical condition. My short term memory is very bad. I will watch a YouTube posting and got to make a comment when I find I gave an opinion on the post 6 to 8 weeks ago. I have no recollection of leaving my point beforehand. I have taken on-line tests ( yes, I know that most of them are stupid, but not all. ) and they indicate a failing mental capacity. I don’t want to admit it but my wife and kids put up with it but I know soon I will tell my GP. With all of the last 13 years I have been left with a pretty useless left leg due to numbness of my thigh and foot. I am also, ( nearly threw my cup of tea at the laptop at this point ), suffering with numb patches all over my body but mostly on the left. I am 61 years old and facing a very unnerving and medically unsound future. As I always say when friends and people ask me “How I am”, I know their question is genuine, but my answer is also genuine ” I’m fine, thanks ( small white lie ) but there are people much worse off than I am “, I am not being disingenuous, I am being honest. My condition can not get better, I have resigned myself to that, but I intend to enjoy my life as best I can considering the prognosis. Everyday is painful, it will not change unless there is some medical breakthrough in the treatment of chronic pain. I just want to have a life that is not all gloom, doom and despondency. So smile, ignore the pain as best you can and have a life.

  • Tara

    Awesome, thanks dear! See ya there!

  • Peter Chaze

    Seriously life changing way to explain my TMJd. I feel like people dont exactly realize that when I listen to their joke, smile, and laugh, I am GIVING MYSELF in those actions. I only have so much of myself I can give every day. I am a male, 22 years old, was the captain of my high school wrestling team, ran cross country, played volleyball, was involved in my fraternity throughout college, and now I am in a position where I cant apply myself the same way. My friends must think I found another group to hang out with, or that I dont like them as much anymore, when in reality, the 1 or 2 times a month I make time to see them, I am giving up other things that are important in my life, and giving up my comfort and electing to take on pain just to keep these relationships. I do agree, it adds a positive element to your life, as you put it “planning a war” every day. I am much more efficient and goal oriented as I have to be. Boy would it be nice to not have to manage like this, but at least I can see the silver lining much like you do.

  • Lisey Marie Russell

    There is a Facebook group called Spoonie Fan Mail Support. It’s all about sending physical mail to one another. They assign you a penal. That may be close to what you mean.

  • Tara

    I understand what you are saying as far as defining oneself by ones illness, but I don’t have to go around wearing a T shirt saying Spoonie etc in order to recognize the insight and opportunity for support here. Or I can wear a shirt and raise awareness at appropriate times/ venues.

  • Tara

    ‘Twas a beautiful day to be sure.

  • Never know: someone might take you up on it. I’m trying to decide if I have enough spoons to mow the VERY shaggy yard while the (HOORAY) sunshine lasts.

  • Tara

    Bummer- ’twas just a thought. But if anyone would like to get a collage or something, with no need to return anything; I’d send a stamp if desired….

  • The drawbacks to snail mail are postage (even with the DROP in rates it is still about 47c for a letter) and some of us have a distance to go to get to our mailbox (1/2 mile each way to mine out in the country), which can use up spoons fast.

  • Francine Falk-Allen

    A young woman with CF in my writing group referred me to this essay. I am a polio survivor with weakness and fatigue issues, and I definitely live counting spoons. A great analogy and I will likely use it myself to explain my limitations. Thanks!

  • Tara

    Personally, when I am feeling all right, I spend a lot of time making jewelry and collages and writing and I was just thinking…. Maybe a snail mail support system would be amazing for this community. I know how it feels to be shut in, unable to drive, unable to work even at jobs I once loved (don’t even get me started on the fact that not “looking sick” and being on disability <> makes some people look at you as if you are just looking for a handout, especially when, like me, you are very liberal and protest the machine that perpetuates financial and social inequality). No, I’m certainly not ready to just put my address out there. But I make one hell of a pen pal, and it’s so much cooler to get a real letter. Check me out on Facebook if you wish [email protected]. Also, looks like I get out of the hospital’s EMU today. I am so ready to wash my electrode filled hair!

  • Tara

    Thanks beautiful. I may be duplicating; the whole Disqus thing is new to me. I love the idea of this community coming together to do what we can for one another.

  • Basically “up voting” is a sign of support. You may have noticed there are very few down votes, which are about one drop short of reporting someone to admin as a troll. At least that is my take on it.

  • Michelle Crowder

    I’ve never understood the spoon memes on Pinterest until now. It all makes total sense now. This is perfect. #MS

  • Tara

    Thank you beautiful. What is the deal with “up voting”?

  • Holding you in the LIGHT.

  • _/|_

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