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!

©2017butyoudontlooksick.com
  • Thank you. This helps me understand.

  • Angel

    RA Spoonie here as well. Know exactly how you feel. Much love <3

  • Dazzlels

    Here i sit with tears in the eyes, this makes me speachless. It’s like a revelation to me. I will certainly use this theory to explain how i have to live . Thank you so much, you’re my hero 🙂

  • Liz

    Thank you – what a brilliant way of explaining how it feels to have to consider every action you want/have to do. Having been diagnosed with cancer at the age of 22, told at 27 that it was terminal I am still here at 36 however it is not just the cancer that is taking its toll, I now have heart failure, fibrosis of the lung, fatigue as well as pain all of which are ‘invisible’. I often get ‘but you look so well’, I could answer that with a few responses but often I just smile as it’s easier. Now I’m going to reply ‘I use several spoons to look like this!’ and go on to tell them about your amazing post! From the very beginning of the morning your story resonates with me. I open my eyes and think right what hurts, how tired am I, how fast is my heart beating. Ok let’s sit on the edge of the bed, don’t stand or you’ll faint, let your blood pressure level a bit, ok now to the bathroom, get that bath on while you’re there do your teeth but sit on the edge of bath so you conserve your energy and so the day goes on; a running commentary in my head of ‘if I do this now then that will have to be tomorrow’. Thank you for putting your thoughts out here!

  • CANADA VISA

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  • Yvon

    Your description is brilliant. I had a stroke many moons ago and the resulting chronic fatigue is very much like living with very few spoons.

    I’d love to share this article with others to help them understand, may I?
    Also, I write a blog and I’d love to write my own version of what this is like and what activities cost me spoons etc. I’d love your permission to do so. I will ofcourse link to you and this original article.

  • Atrixwolfe

    My heart hurts for you. I’m so very sorry for your loss.

  • Atrixwolfe

    My daughter is 10, I’ve used the spoon theory to explain how my life is with fibromyalgia, chronic migraine & an unclassified MPN. It really helped her to understand. Recently, she came home from school and told me she used it to explain to her friend when she asked “Why is your mom always sick?” Her friends response was “Wow. That really sucks!” Bingo. My daughter often uses her extra spoons to help me around the house when she knows I’m spoonless. I love that kid!

  • Karen Wyman

    I read a book about 10 years ago, called “All in my head: An epic quest to cure an unrelenting, totally unreasonable, and only slightly enlightening headache” by Paula Kamen. She uses the analogy of “energy marbles” – it’s the same thing as your spoon theory. I found it very helpful; I became better at managing my limited number of “energy marbles” just by having that way to think about things. And I have used it with so many of my friends to help them “get it”, and just like with Christine, now my friends use the term themselves. It makes life easier to be able to just say, for example, “No, I don’t have enough energy marbles left,” and have them understand without any further explanation. By the way, I highly recommend Paula’s book.

  • Sandra Bilodeau-Declare

    Thank you so much for this remarkable explanation of what we, Lupus sufferers go through each day…I am going to use this to explain to my family and friends, so they better understand me. Somewhat like your story, my family constantly asks me questions, and constantly asks me why I am sick, and then they tell me I should go see a doctor. It gets very frustrating telling them, I don’t need a doctor, I have Lupus and this is what’s it’s like for me. I waste far too many spoons each day, which is why it takes me longer to recover or find strength, but in my circumstance, I have no other choice, but your story really helped me. Thank you for sharing with us. <3

  • Candace

    Thank you so much for this. I’ve never read or heard a better or more accurate description of living with a chronic illness that’s not visible to others. One of my worst illnesses is fibromyalgia that I’ve been feeling as far back as I can remember. I’m only 26 and I don’t remember a time when I felt good and pain free. I’ve been counting spoons for many years, it’s very helpful to have a way to explain to others now and know that I’m not alone in this!

  • Nikee Rayner

    This has truly changed my life and my relationship with my mother. Thank you, so much, for your honesty x

  • Sally Smith

    I have RA- rheumatoid arthritis. I don’t look sick either, but it can be totally debilitating on some days. Yes, I occasionally use the handicapped card placard, so I don’t have to walk as far. Yes, I am bent over and have stiff legs and knees when I get out of a vehicle. Yes, I use the handicapped toilet in the ladies room – because it is usually higher and the grab bars make me feel safer when I sit and get up. None of the autoimmune diseases make a person “look” sick, but oh, to give up one day of taking medications, fighting fatigue, and wondering how to get through the day. I will share from Fox Pines Homestead.

  • Amanda Why

    Thank you. I want to get everyone I know to read this so I don’t have to keep trying to explain myself.

  • Lisa

    I love this story and have tried to explain lupus to so many family and friends but nothing explains it better then this. I was wondering if I could please share this on my fb page to help them understand better. Please. Thank you so much for sharing your story. One that has helped so many ♡

  • Arev Reliewrha

    What an amazing pictorial representation of “invisible” illnesses; I really like that.
    If you (by the way) want someone to translate this text in German (I saw that there are so far just English, French, Spanish and Hebrew available), simply contact me 🙂

  • disqus_cNVO19VX1w

    Thank you for posting.

  • felineguardian

    Very sorry to hear about the loss of your daughter. I can’t understand why anyone did not respond or post a word of support. I guess they didn’t want to use one of their spoons.

  • Anna Catherine

    My mother has an autoimmune disease that is related to lupus but isn’t quite, and MS, and has suffered from depression on and off in her life. Although she’s pretty good today she still gets fatigued easily, can’t deal with extremes of heat or cold, and still suffers from seasonal depression. I myself deal with depression and severe anxiety, which my medicine deals with fairly well, but some days are still bad enough that I’m drained before my first class of the day and have to spend the day recharging enough to at least get my homework done that evening. I heard about the spoon theory, and it put into words so perfectly what I feel on those days. I shared it with my mother and she got it immediately, because it put into words not just what I was feeling with my executive dysfunction, but what she feels and has felt with all of her illnesses. I liked being able to both explain how I felt in greater detail (because while she understood pretty well how I felt most days, having gone through it herself, I hadn’t really shared how bad it could be) and give her another way to explain her own illnesses to people. Long story short, you have given a lot of people the ability to explain themselves and make those kinds of connections, and I thank you for that power.

  • Wendy Watson

    This story is very powerful. I am an art teacher and have designed a banner with a spoon. I would like to include this story with the instructions. May I have permission to copy the story?

  • travellinda

    Outstanding!

  • (((hug)))

  • Lynn

    This is a brilliant way to describe what life is like for those of us with chronic, debilitating conditions. I’ve always been an excellent planner, and that skill has come in handy during my 20+ years with Chronic Fatigue Syndrome and fibro … I plan how I will use my energy, as best I can estimate it, for a number of days at a time.

    It’s frustrating for others when I am not able to suddenly or spontaneously meet them for coffee, or a movie, or even to talk on the phone for an hour. But that’s how I manage my life enough to actually, occasionally, get out and DO something. It definitely requires prioritizing carefully: When I am determined to get to my book club, as I’ve been for several months, I plan exactly what I am and what I am not going to do in the days leading up to the gathering.

    It may mean that a couple of days of dishes sit right where they are, it probably means I will use frozen entrees and eat as simply as possible for a week ahead … and know that I will not be able to do much of anything for at least 3 days afterwards. It means I will plan my shower and hair washing for the day before … and likely not take a shower for several days before that, to save my energy.

    When I get sick with ordinary stuff, such as the flu (fortunately, it doesn’t happen all that often, in part because I’m not out around people very often), I can tell people that I am totally out of commission for at least a month, and I’ll be extremely limited for at least another month. Few healthy people can wrap their head around this …

    Until I got a Lyme-type infection about 5 years ago (my dog brought in the tick from his doggy daycare facility, though I didn’t realize what it was until too late), if I was careful, I could do most of what I most wanted to do. I was even able to do some ballroom dancing classes, though I paid dearly after each one.

    Since the Lyme, I have very little recovery ability (and I did beat the Lyme, but that’s another story). One or two bad nights sleep-wise, and my chronic norovirus erupts. Then I do nothing more than get out to the sofa for the afternoon usually, for days and days on end. In the past 3 years, I’ve had my elderly mother living with me after my father’s unexpected death; this constant stress has definitely impacted my ability to function … even with some in-home assistance.

    My life before was very limited, but I’d come to terms with it (and I was helped by being a loner/introvert, though eventually I miss social activity) … now, even that is pretty much gone. Keeping my usual cheery disposition, despite the challenges, is tougher than ever … but I know it could be even worse.

    Spoonies, unite!

  • Jennifer Decker

    I have 4 severely herniated discs, disc degenration disease, spinal stenosis and arthtirits in most of my discs. Thats just my back. I also have depression, panic attacks, have suffered with self harm, as well as female problems too. The ones that use ‘spoons’ the most are my back and female problems. It’s very depressing to think about when Im 40 and where I’ll be. Bed ridden permanently if there isn’t any new ground breaking technology by then. I found out about my back when I was 18. Im 27 now and its 20x worse. I have to think about how I bend, twist, what I pick up, how long I stand, how I stand, what shoes to wear, how long I bend over, what objects I can do for that day like cleaning and cooking. My medication for it also causes problems like extreme sweating so then I have to take breaks all the time or I feel lile Im about to pass out from the heat. This is such a great way to explain it. Thank you!!!

  • disqus_cNVO19VX1w

    I read this and cried and cried. I lost my daughter almost 13 months ago. She had migraines, depression, pain, pain, a huge weight gain, so much so that she could not get around. She only went to the dr’s when needed and I took her. I had her and husband and child live with us. We were in contact constantly everyday, by phone, text and FB. We felt so helpless we searched for cures, or help, she went out of her comfort zone to help herself and I think to make me feel better. When the drs said they could not help her, she broke down with nowhere else to go. But she was considering bariatric surgery…she was very afraid but she wanted to get some of her life back. We attended many doctor appts preparing ..then….When she passed suddenly, the sadness, guilt, need to have her was so overwhelming. I wish she could have read this. Everybody said, well I know someone who has migraines and goes to work, or just go on a diet, take another self help course….and would leave her. We still don’t know outcome of autopsy, first findings were “nothing obvious”. I lost my Dad, niece, sister and then my daughter the pain for all is terrible, but the loss of her is the most painful and will forever be with me until I take my last breath. This post brought up so many feelings and I hope all who read it…will get some understanding of it’s meaning.
    Thank you and Bless You,… a very sorrowful, and lonely Mom.

  • IBCat1

    I have neuropathy, degenerative and spinal issues and have for decades. Thanks for this. I can never seem to get people to understand why cleaning houses and gardening is so hard on me these days. On my days off, I don’t have many spoons left.

  • Angel

    Thank you very much. I struggle with depression and severe anxiety as well, so I know how difficult dealing with both can be. All the best xx

  • Shonna Sledge

    My mother had rheumatoid arthritis so I understand what a horrific disease it is. We never knew how many spoons she would have on any given day. It would always upset her when people would say to her “You sure are looking good today” cause honestly she sure as heck didn’t feel good. But she hid it really well like lots of us spoonies do. My illnesses are both physical (COPD) and emotional. It takes way more spoons for the emotional pain and the anxiety attacks. I truly hope your arthritis is responding to medications and you still feel like getting out.

  • Squid60

    Thank you! Thank you! Thank you!
    I now have a way to clearly explain my life to non-spoon carrying people, and they get it…as much as they can get it anyway.

  • Clifton James Cummings

    I have fibromyalgia, lupus, congestive heart failure, epilepsy, and a few other “invisible” diseases, and The Spoon Theory has helped me a lot. We are excellent actors. Anyone can act sick, but be well. Being sick, but acting as if you were well is a challenge and a half to accomplish! Thanks for this site.

  • Harry Hamer

    Wow! Quora brought me here. Your story gives me exactly what I’ve been looking for lately – a metaphor for describing and dealing with my own genetic challenge. Thanks & love from Amsterdam

  • Rose Maxwell

    I want to share my testimony to the world. My marriage has been a blessing until few months ago when my life almost get sucked. A strange woman took my husband’s love away from me. He left me and our 3 kids to this lady. I was in shocked because i know my husband still loves me. I tried all i could to get him back but the more i tried the more he went far away from me. All my effort yielded nothing. I was almost giving up and wanted to file for a divorce. Then, I went to many spell casters but they all failed taking my money away. I lived in pains for 3 good months without any plan of getting out of this mess. Till I met an old school friend who show me to Dr Uzoya on [email protected], a spell witch who then restore the happiness to my family and my life. His spell worked so fast that I could not even believe it. He’s great for as much as I can tell. Am still grateful to him till tomorrow for his spell works. My husband came back with apologies all for the spell powers of Dr Uzoya. You can also contact him on his email for all your relationship or marital problems; [email protected]. thanks to you all

  • gillian noel

    Have been suffering from (LUPUS) disease for the past four years and had constant pain, especially in my knees. During the first year,I had faith in God that i would be healed someday.This disease started circulating all over my body and i have been taking treatment from my doctor, few weeks ago i came on search on the internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from (HERPES VIRUS) by this Man Dr Osemudiamen and she also gave the email address of this man and advise we should contact him for any sickness that he would be of help, so i wrote to Dr.Osemudiamen telling him about my (LUPUS) he told me not to worry that i was going to be cured!! hmm i never believed it,well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as the Dr assured me that i have cured,after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE, So friends my advise is if you have such sickness or any other at all you can email: [email protected] or call +2347038110398. He told me that he also help people to cure HERPES VIRUS and also help people to bring their ex lover back. contact dr Osemudiamen if you have any problem. email: [email protected]

  • PATRIA WIDMER

    Good article, Thanks!

  • Best I can tell consulting AMA Complete medical Encyclopedia 2003 is there are three types:Lupus erythematosus, discoid or DLE (mildest, causing a red rash); Lupus erythematosus, systematic or SLE (which can be severe, but is managed by antimalarial medication and other treatments), and Lupus pernio (purple rash caused by sarcoidosis). All three are autoimmune diseases, which means the body is attacking itself. Taking my SLE to bed. Good night.

  • corvinusos

    I wanted to ask, because I can’t seem to find any article on this topic which is clear enough for me to apprehend – how many different kinds of lupus are there? What are the differences? What are they exactly?

  • K Jump

    I have chemical sensitivities now too, caused by allergy indused asthma… which I think was made worse do to all the pharmaceutical crap they had me on for a chronic spinal condition. I already don’t know what I am able to do day to day for my original chronic sickness, and in the last 2 years get very ill when I go out and often have to go to the hospital from the reactions and asthma attacks from the allergies and chemical sensitivities. 🙁 It sucks majorly. Especially since I have been on every medication you can think of for these illnesses and nothing worked, probably close to 20 medications all together and nothing helped. On the plus side I am now a medical cannabis patient and I am finally starting to get some relief. I am finding what helps me for pain, for the first time in over 10 years I am finding some relief. I am even finding some improvement with my new found asthma and for the first time in 2 years feel like I can breathe… most of the time. I still have to wear a special allergen and chemical mask when I go out called the respero techno which I have used for almost a year. It had been the only thing that has allowed me to go out in public, it helps a lot but there are still lots of places I just can’t be, even with the mask. It is heartbreaking alot of the time especially if your friends or family don’t really understand what you go through day to day and criticize you for not doing more. It is definitely difficult not to punish yourself because of your illness.

  • Jessica

    I’ve used the term spoonie a number of times but never knew the origin. This is the perfect way to describe my “imaginary illness” thank you for sharing

  • Megan

    This is simple yet beautiful and on point. I’m going to share this with my family and friends who still have a hard time understanding what my chronic “imaginary” illness means. Thank you for sharing.

  • Angel

    This is perfect. Everyone in my life has to read this. I have Rheumatoid Arthritis and I am a spoonie.

  • Karen Begeal

    There is some great info on the Inspire site. My grandson who is 4 has classic. His skin tears so easy and everything gets infected and it seams to be getting worse. I feel for you good luck

  • Sarah

    That is a neat quote! Thanks for sharing.

  • Anna Wales

    That sounds so debilitating. I am so sorry that you have to live with that. I don’t have fibromyalgia. My conditions cause ongoing present symptoms that flare up and get worse every so often. Some days are ok and others are terrible, so for me it is hard to know what the day will bring or what consequence something might have on my body.

  • Anna Wales

    That sounds like a terribly hard illness to live with. Especially in today’s society. And you’re so right, grieving past goals is extremely difficult. The only thing I have found to help with that is to do as you said, set and achieve new, realistic goals. I heard a quote the other day that seems to fit this situation, “The pessimist looks down and hits his head on the ground. The optimist looks up toward the sky and loses his footing. The realist looks straight foward and adjusts his path”. I hope that you continue to keep your head straight toward the path and adjust accordingly.

  • Sarah

    I have Multiple Chemical Sensitivity – MCS. I have been to top doctors in the field and there is no cure…avoidance of all chemicals is key. THAT in near impossible in this world of preservatives, chemicals, GMO foods, etc. So the ‘happy balance’ of each day that I wake is my ultimate goal. Most days I do pretty well….learning to STOP pushing myself and to rest and take care of myself will continue to be a lifelong struggle as we live in such a productivity driven world. Blessings to you Anna in your journey. I also had to learn to grieve the loss of many of my goals and dreams and then focus on what new goals and dreams fit within my new restrictions. That, too, is a daily process and journey and not a destination. I have had to learn to ‘live’ each moment of the journey. Quite a different perspective most days.

  • Anna Wales

    That comment just described so much of my life! Lol. Thank you so much for your support and understanding. I hope that you too will be able to find a happy balance or maybe even one day find a treatment that helps alleviate the symptoms so that you may not have to search and contemplate that balance (high hopes, I know lol)

  • Carlund Williams

    I don’t know much about Lupus but I do know with fibromyalgia that it gets worse over time with most people. I’ve had it over 25 years and as the years have gone by it has just gotten worse to if I use hardly any spoons at all that’s great for me but I also have lots of back problems too. 2 back surgeries, 1 neck surgery and I’ve needed both for years again and keep putting it off. If you have fibromyalgia, I don’t know if you’ve seen the article where there are 6 degrees of fibro. #1 is where you just start off hurting but you can still go and do many things without it bothering you too much and then it describes 2, 3, 4, 5, as getting worse and then # 6 is where you are mostly bed bound, house bound,no house cleaning much at all. I’m there and it’s bad. Hope yall don’t get that bad

  • Sarah Sears

    My condition is such that many days are trial and error even after 3 – 5 years of pacing and trying to ‘figure it out’ and even with in a day it can be trial and error from hour to hour. It is hard to know what is ‘worth it’ and what isn’t. I know that some things I deem ‘worth it’ before the spoon drain often after the fact in the midst of the exhaustion and other symptoms it may not have been. But then I feel like what is the point of ‘just existing’ to save spoons vs. using my spoons to ‘live’??? Just know that you are not alone in your struggle to find balance and that you will have days of hope and days of weariness from the battle.

  • Anna Wales

    Totally agree with that. I normally don’t have any problem with not doing the things that I know are going to be too hard to handle. I think my issue is defining what could be too much, and when. As you said, one task could be easy one day and difficult the next. The hard part for me usually is, deciding how hard of a task it may be and deciding if it’s worth the consequence, if I choose to pursue it. For example, I’ve been drained more than usual for the past couple of weeks, and my birthday was a few days ago. It was difficult for me to decide if celebrating was going to be worth it or not. I didn’t know if I’d regret not doing it, or if I went, if it would take such a toll on me, that I’d regret that. We ended up going to a slow pace Halloween “ghost walk”, and since I didn’t feel well, it wasn’t much fun. But I think it’ll be trial and error for me when making those decisions in the future.

  • Sarah

    Anna, I agree with Barbara some things are more draining. In my situation, say unloading the dishwasher may not cost me as much one day as another. It depends on what is already ‘taxing’ my system just what and how much it will take to put me into overload. It is quite frustrating to live such a daily unknown but you will learn to pace yourself.