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.

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  • Paula Holcomb

    I’m have allergies to the same it makes life hard at times

  • Paula Holcomb

    Thank you for putting what I have been trying to say but couldn’t get the words out in the order needed.

  • Paula Holcomb

    I have a TBI too….one of the things affected is the part of the brain that tells me I am hungry. I set alarms to take meds and tell me it is time to eat. I live alone so dinner might be an ice cream sandwich….you have to remember to cook to hahaha. Thank you for sharing…it made a difference.

  • Carolyn Tamm

    i definatley cried – my god i can relate this, more importantly, someone can relate to me

  • Jean Cade

    I don’t understand why you responded to my comments. You’re projecting and not paying attention to anything beyond the triggers that seem to have set you off. Your comments are unrelated to anything I’ve said.

    You seem to think some people who know you believe you are lazy because you are chronically ill? That has nothing to do with anything I’ve said. Scoliosis isn’t chronic? Arthritis and fibromyalgia are passing phases? You don’t know me yet you choose to misjudge and project your negative emotions onto a stranger.

    There’s more wrong with you than you realize. Don’t be happy for me, because you don’t sound like someone who knows how to be happy. REALLY. And you are wrong. There are people with chronic conditions who do not and cannot keep their ears open for reasonable treatments because they have advocates and physicians who do it for them. Some of us carry on with our lives despite our diagnoses; we occasionally get to chat with people like Joe Weil, and walk away feeling connected and better. Life is for the living. I hope you’re happier and can learn to embrace instead of attack others who come to a community such as this because they feel welcome and safe enough to share their personal experiences. Be well.

  • Susie

    I am so happy that PT has helped you Jean, I REALLY am. I would like you to consider that some people have chronic conditions, some have multiple chronic conditions. I do not think there is ANYONE with a chronic condition that is not always keeping their ears open for any reasonable treatment. Until the time comes when effective treatments arise, I think Christine’s story of The Spoon Theory is an awesome way for those with chronic illness to explain to friends and family why can not do all the things they used to do. They are not lazy, they are fighting an illness, an illness that they have to deal with on a daily basis.

  • medimary

    I’ve got MS— I agree— this is right on.

  • Roberta Nolan

    This is so accurate. I have chronic Lyme disease. Enough said.

  • Joe Carroll

    Someone just told me about this today and reading it nearly made me cry in relief. I have Ehlers-Danlos and POTS and there have been so many days where I not only struggle through the day but then spend the entire next day recovering because I pushed myself way too hard (and sometimes even the day after that) and then even more time struggling against feeling bad about myself because of course something always has to give and so much of it is stuff that anyone out there has no problem getting done. It hasn’t helped either that my own therapist has given me a bit of a hard time about things like skipping showers or other activities – that just makes me feel worse about myself, like why can’t I just DO it? I was so relieved to discover I’m not alone in dealing with these kinds of things. I could relate to so much of it specifically. This analogy helps so much. A goal I’d set recently was to work on being kinder and gentler with myself regarding limitations. I think this analogy will help in how I look at things. Thank you.

  • Otohara

    Ever since I can remember, able body people have said to me “you handle it so well”. I got the polio virus when I was 19 months old. I have never known how not to handle what has been with me my entire life.

  • Jean Cade

    Joe, you have my deepest sympathy and empathy. A cousin suffered post polio syndrome and she self-medicated with alcohol until she she died. I’m truly sorry for your suffering. Tramadol + Benadryl stopped working for me last week, so I have to stop taking it for about a month before it works for me again. My pain seems irrelevant compared to your own, coupled by paralysis, but scoliosis is no laughing matter. 🙂 I burned myself with a hot water bottle and must deal with blisters on top of everything else. Who said we die and go to hell? I believe hell is right here on Earth. 🙂

    We are alive though, right? And where there is life there’s hope. I cling to hope. Some genius will design a pain med for the likes of us; just you wait and see.

    Be well, Joe.

  • Joe Weil

    You wrote my story in a way, Jean. I should be using hydra, with post polio syndrome. Chronic pain at every joint and in every muscle. 14 surgeries, many tests. paralyzed right diaphragm. I lose more mobility every day. I’m also allergic to Nsaids and Opiods.

  • Joe Weil

    She knows a little more of what it’s like. If you,re a normy you’ll be in big trouble if you have a relative that has an invisible illness.

  • I live with a chronic vitamin b12 deficiency, which mimics multiple sclerosis in many ways. This analogy has been so helpful to me many times.

  • Nancy Wilson

    I remember my Mother getting green stamps; depending on how many groceries she bought, they came pouring out of the machine. She pasted them into booklets, and was able to redeem them for merchandise out of a catalog issued by the green stamp company (still in existence today, or a couple years back when I ran across a bunch of my Moms long-unused stamps, I discovered). I understand having to always give a “hopefully I will be able to attend, but don’t hold your breathe” response. What I just don’t get is the connection between chronic illness and spoons. M.S. has played havoc with my logical thinking skills, I have been coloring, beading, artistic crafty things to spend my time, but have trouble balancing my check book. I used to be an executive admin. assistant, in charge of 150 paychecks, what kind of leave they took, etc. I did not make one mistake in over 6 months of remote data entry of all these timesheets, so had no “payroll issues” to go back and fix. Losing abilities is sad and humbling. Maybe someday I will be able to get my head around the whole spoon thing. I know growing up, I always had a spoon ring on my finger, by coincidence. Thanks for hoping for my sleep. Last night I fell asleep sitting up and crashed when my head fell to rest on the nightstand, knocking over a bunch of stuff and waking me up. I had a good egg on my head again today, but it could have been worse. I see they are making some pretty jewelry out of old spoons, and that they are fun to create things with. Sadly, the cousin that gave me my spoon ring died at age 16, being unable to breathe in the night. My other cousin died at 43; she could not breathe. I have EDS Hypermobility, but my Mom died at 52 when her heart ruptured in two. That seems more like vascular to me. They have been giving me nitroglicerine for years for my chest pain, anxiety, but I learned on my own that both EDS and M.S. can restrict your ability to breathe. There is just too much to figure out. I know I need a Caregiver and am ineligible because my IQ is too high and my age is too low. I just don’t know anymore. I guess I should know that I am a “Spoonie”, whatever that implies. Thank you for your concern and help, Barbara. Now I really miss my spoon ring, I know it is around here somewhere, as I have never really gone anywhere, in almost fifty years. Best wishes. I am going to try to put on a nightgown and settle down into bed now. I will pray for something, but not spoons just yet. Someday maybe I will understand.

  • Taluscat

    Geezus it’s a freaking metaphor. Don’t be so literal.

  • [email protected]

    I may be going back to before you were born, but maybe YOU should think in terms of Green Stamps (which no longer exist) except they disappear from the book instead of being added. Even bed rest takes spoons, er: stamps, sadly. When dealing with chronic conditions, it is well to remember that the condition is NOT logical, it just is. The analogy is more to help the temporarily able-bodied understand what life is like. I tend to go with “I will pencil such and so in, subject to how I am feeling on the day, and please understand that I may not be able to call to cancel.” Unhappily this will not work with doctor’s appointments unless there happens to be a hurricane barreling towards one’s vicinity, but does take some of the hassle out of social engagements. I hope you are able to get some refreshing sleep.

  • Nancy Wilson

    I too am chronically ill, thrice over at least. Some days I can get out of bed and some days I can’t. I recently spent 7 days in bed and did not eat during that time. Pain, shame, and depression had ahold of me. I got weaker from the time in bedrest. Did I save any “spoons”, like stockpile, for not bathing, dressing, eating, doing chores? So many people are into this, but I really don’t get the association with spoons, besides the fact that she was in a diner and those were what she had to work with. Is each spoon a dose of energy, a task completed, a difficult, important phone call made, a PT session? Exactly how many spoons does one get a day, whom do we redeem them with? What if a task feels like half a spoonful? We cannot backtrack and reclaim our spoons, they just disappear. So what if we wake up and there just are no spoons for the day, and plans must be cancelled? That takes effort. Rescheduling, rerouting, cancelling. Does the spoon fairy come at night and leave the spoons for you? It is very cumbersome trying to carry a bunch of loose spoons when you need a cane, a bag, a list, keys, and a beverage. I wonder what the receptionists at my Doctor’s office would do if I left a spoon with them at the conclusion of a drawn out waiting visit? Then the Pharmacist? Then the checker at the store. If and when I finally make it home safe do I leave a spoon on the porch? Spoons can’t hold you up, and they drop easily, or go flying out of my numb hands. Why not buttons, bingo chips, tokens, calling cards? Pogs? Postage stamps, or marbles, Hot Wheels (those you hate to give up worse than spoons). It is 5 a.m. and I have been up all night trying to understand the sentiment, is it the cradling support of the stack, and when you get down to one, your day is called quits? I need a better analogy, or reference, I feel like Mr. Spock, but I can’t help it; it does seem highly illogical, Captain.

  • kd

    I’m not adoctor but when i get my ct or xray report I google what terms I dont know and can interpret it . I’m sure you can google them to get a bette idea. I didn’t want to try to explain..I’d probably confuse people. I can post the explanation my PT gave me for hypermobile jonts. It can be applied for anyone. I have EDS and therefore hypermobility. Many isometric exercises are good for stabilzers.

  • [email protected]

    It helps if one knows which are which, which (alas) most of us who are NOT physical therapists do not.

  • kd

    Ha ha! I have EDS hypermobility and maybe classicle type also. My fingers/thumbs hands have lax muscles/ligaments/tendons..as a result I have instability and pain. Some of the muscles etc go up the arm into the elbow. I get myfascial pain and knots. My fingers are too sore etc to use to massage. I use the eraser to get in between the muslces and work the trigger spots/ tight muscles. I use anything for anywhere on my multiple areas. Feet/ knees/thigh/sijoint/pelvis/ hip…etc.This way I can apply the pressure I can tolerate instead of having someone else do it. I bruise very easily..I can tolerate the painful massage but the bruises last and hurt for days.

  • kd

    you have to know what kind of physio to do. YOu need to activate the stabilizer musles…zoom in on them ..not use the major mover muscles. It’s done in baby steps. slowly and gradually..not ever to feel fatiqued. it’s the quality not the quantity that couonts.They don’t cause pain of the surrounding joint.

  • Jean Cade

    Okay, I have to ask. Pencil eraser for arm and elbow? Scoliosis knots up my back among other things, so the lacrosse ball, a wall, or my desk chair helps immensely, but a pencil eraser? Do tell. Lol.

  • kd

    lol…I have a basket at my bedside and living room with an assorment of different sized balls…the smallest plastic xmas balls-golf-tennis-lip balms-baseballs. Anything that can fit into an area I use. I’ve found out the erasor on a pencil works well in my arm and elbow. thes hiatsu kneeding machine I bought at a thrift store for $5. I buy many of them at garage sales also.

  • Jean Cade

    Thanks for clarification.

    I use a lacrosse ball. 🙂

  • kd

    OH I know that not many can afford physio. I’m just expressing that the act of doing physio is so improtant and that if one isn’t sure of what to do it may be worth a visit. If one can’t afford it there are plenty of good videos on utube from reliable sources.Have you looked into isometric exercises and others that don’t wear the joints zooming in on the stabilizer muscles around the joints? They are easy on the body and can be done without people knowing you are doing them. I slowly tighten and release certain muscles where ever I am. When walking to the bathroom I do my hip stregthening ones against the wall at times. I incorporate it into my day. Doing a lttle at a time does help. If one only wants to do at once they could spend as long as they want daily… If one is given direction of what to do they do not need to be dependant on visiting a physiotherapist on an ongoing basis. STretching/massage is considered physio, is also important and doesn’t require a physiotherapist to learn about and practise. A tennis ball on a trigger point can be done Bottom line …..lots can be done independant of a therapist.That is what people should be aware of.

  • Jean Cade

    I’m speaking from personal ongoing experience. We don’t have a pool at home and aquatic therapy helps those of us who have joint pain; it’s easier on the body all around. You couldn’t pay me to use our community pool.

    The hot shower after workouts and therapeutic manipulation at the end of each session helps too.

    Not everyone can afford the visits. My annual physical exams come without a co-pay, and I pay five dollars for office visits. Those of us who are fortunate enough to afford quality care must never forget those who cannot. I’ve worked for some of the best physicians and have not forgotten our patients couldn’t afford the PT they needed.

  • kd

    PHysio isn’t necessary that often. I learned what I needed to and followed thru on my own. I go only 3 x yr if necessary. I have coverage for that and wouldn’t hesitate to go for more paying $70/visit for the benifits I gain. The average person doesn’t realize what all they can do on their own and want easy wasy of doing things with minimal involvemnet

  • Jean Cade

    Even a fork or a knife beats nothing. I’ve seen people eat peas with a knife, so where there’s a will there’s a way. I’ve seen my cousin, who has Lupus live a better life than many people in their prime. 🙂

  • Jean Cade

    Absolutely! Muscles atrophy from disuse. Chronic pain causes depression. Untreated depression can lead to suicide. Exercise does help. It changes brain chemistry. It helps the body. Stagnation is slow death. Even patients in comas are massaged and have applied exercises from physical therapists. But change your your way of thinking and watch what happens.

  • Jean Cade

    At $35 per co-pay per visit, times three days a week, PT prevents the average American from benefitting for something that is better than pain meds alone because they cannot afford it Pain medication prescriptions are less expensive and co-pays can often be zero. Our insurance companies seem bent on keeping people like us dependent and in pain because it benefits them financially.

  • Jean Cade

    I understand what you mean. Physical therapy hurts and takes two days to recover, but in the end it helps me. Hydro therapy has been a blessing. I hate starting and hate when the prescription for PT runs out. My quality of life is miraculous until the pains return and it’s downhill again–then doctors again, more prescriptions for PT . . . It’s an endless cycle, but yes, the more we move the more strength and stamina we gain. I’m sure PT might not be for everyone, but I am grateful for therapists who understand how hard it is to convince some of us that moving is good despite the pain, and then see us through to feeling better.

    In case there are doubters, I’ve had seven surgeries, deal with nerve pain and depression, and am allergic to NSAIDS and most pain meds.

    Thanks for daring to comment. It means a lot.

  • Heather Fae McLean

    I have a body that is in advanced cancer – palliative care stage…..andit has suddenly dipped dramatically. A Very kind friend shared this with me yesterday when I was experiencing all the early part of just getting up and was dropping spoons left right and centre…managed shower but then could not dry myself, nor get to a tap to get a drink – hyperventilating, could not make breakfast to have medications and could only partially dress myself and was shocked by the sudden-ness of it all. It is very hard to give up independence on things you always did for yourself….Friday the District Nurses are going to help me shower – a big learning curve

  • Timothy Moore

    Yeah, it was like she had ESP, wasn’t it? I was actually weeping halfway through the article!

  • Timothy Moore

    Over two years ago, I was on the wrong end of a brain injury. Ever since then, I’ve beaten my head against a wall trying to stretch my limits, but to no avail. Then, of course, I do the intelligent thing. I get good and mad.
    Having a job isn’t an option, as my cognitive powers have been usurped and I’m not allowed to drive. When I do the dumb thing and overdo it, the next day or two become hell. My brain just shuts down. I didn’t get it until now. Christine, it was like you were reading my mind (what I’ve got left of it, anyway). I need limits, but I didn’t know how to measure them until now.
    I’m actually excited to get this whole thing started. I know it’s going to take a lot of experimentation, but now I know the deal. I also get that some days are gonna be worse than others and I’ve got to limit myself. It just won’t get done, that’s all.
    I am blessed with the greatest wife in the world and she was the one who turned me on to this article and your theory. She and I both would like the slay the beast that’s been inside me these last couple of years. Thanks for handing us the sword, er, I mean spoons!

  • [email protected]

    Sorry. Glad to see there IS someone as Admin.

  • Kechunk ✓ᵛᵉʳᶦᶠᶦᵉᵈ ᵃᶜᶜᵒᵘᶰᵗ

    No, printing the page does NOT violate anything, printing and reselling it or giving it out as part of a printed presentation would violate it. Please understand things before you spread bad info.

  • Kechunk ✓ᵛᵉʳᶦᶠᶦᵉᵈ ᵃᶜᶜᵒᵘᶰᵗ

    You do know that those of us without certain diseases do not study them and learn every intricate detail about it. She was simply asking a question. She is not sick and does not know what its like.

  • Duncan Adams
  • kd

    While sitting here typing i”m doing physio activating my pelvis, glutes and other muscles around joints. No one in the room is even aware I’m doing physio. One does not need to take time out in the day to do it. I do it on the throne, at the kitchen sink, walking to and from the bathroom. brushing my teeth. Just try to work it into your activities of daily living and make it a routinge. It sure doesn’t hurt and after time it DOES benifit you. IT takes a while..

  • kd

    I find it so annoying that physio is so valuable to our well being in so many ways and if it was acceccable it would certainly make less $ on the health are system in the long run.

  • [email protected]

    Trouble is: not all of us can afford a physio. When the area surrounding a joint hurts and experience tells us that sort of pain usually presages not even being able to lift a coffee cup next day, it is better to rest than persist.

  • [email protected]

    Exactly: quality not quantity. Better to rest BEFORE dropping a baby.

  • Dee Dee

    ip
    I thought this might help by saying what lupus is an autoimmune disease that has no cure and can be fatal. I myself have known people for whom it was fatal.So when they say they only have this many spoons that is not feelings that is facts.

  • kd

    ..and learning better strategies to cope!