• Greg Wotton

    Laying in bed at 4pm (Oh, don’t people say “I’d love to be able to lay in bed at 4pm”) I read this article. My pain hasn’t really been in control for a few weeks now and I’ve been feeling really, badly, drained. I had tears in my eyes by the midpoint. What I like about this is the visceral nature of the experiment. I’ve tried to explain using levels, numbers, etc. (Aspie on top of everything), but the visceral nature of giving someone something tangible to hold is valuable to understanding.

    I’m tempted to mention this theory and promote the site, in a book I’m working on which is about how to deal with surviving serious illness and injury. People seem to think that you can “get better” and go back to being who you used to be. I have a systemic, degenerative bone disease. Both shoulders were replaced over a decade ago and we carefully watch the lesions in other joints to see which will collapse next. My first wife kept expecting me to “get better” to be the highly active and energetic person she met in the first place. I’m hoping a book will be a gift people can give each other in the same way as When Bad Things Happen to Good People has been.

    I’d be interested in discussing this with you at some point if you’re at all interested in being included, even if you’re only willing to let me put a URL in “additional resources.”

    Thank you for sharing this insight. It benefits us all.

  • Amy

    How do I get permission from the author to print this article to give this to my patients. I have a support group of women’s with severe pelvic pain, and they could benefit from reading this article. If any one knows how to get permission from the author can you please e-mail me at [email protected]. Thank you!

  • UnrulyGuest

    We are a community of people who don’t appreciate it when anyone tells those who stand for us to get a life. Sorry for your loss but I stand and fight with the people who get on my coaster willingly.

  • BeautifullyChaotic

    You make some valid points between all the anger and insults. Jumping on the roller coaster is not the same as owning it. I think the point was that we are all fighters whether sick or healthy. Nobody wants to fight with someone who has already counted themselves out. I would never speak to someone who is there for me like you have just done. I didn’t get to choose what I live with but those who love me stand with me voluntarily every day. It sounds like you are fortunate enough to have a family of fighters. Nobody here would belittle those five days you stayed up. Saying up for that long seems nearly impossible but I think it makes the point that you had to keep coming up with spoons to be there. You did what even most healthy people can’t do for somebody like me. I would never tell you to get a life or claim you are not in the same boat as me. Just the way you found more spoons to go on for five days maybe I can too. You both sound tired from the fight but your anger would keep me far from your corner. I am sick but I am strong. I will stop counting my spoons on the ground and stand with those who love me. Thank you

  • Guest

    This has really helped me understand how difficult it is for others to deal with a chronic disease. A good friend has CF and I have always admired her for spending so much time in hospital/doing meds – yet still having gathering enough mental/ physical strength to achieve all the things unaffected people too; this helps me check myself and realise that it’s harder than I can ever imagine – but being there for them and lending some of our ‘spoons’ even if it seems small is the least we can do. :)

  • oncomom

    I am disgusted by your nasty response and martyrdom. I had a very ill daughter, actually she died. I took care of her every day and night of her life including cancer treatment and hospice care. Your diabetic person is very sick and im sure they appreciate your help but to actually put yourself in the same boat or lower of people who have serious life threatening conditions is disgraceful. Poor you you are healthy enough to find more spoons. Boo hoo I stayed up for five days straight while my daughter was a champion. You are a stupid cunt. Get a life. Caretakers are not the same as the fighters. You dont have to fight, you choose to assist. Jumping on the roller coaster is not the same as owning it. Im appalled. Ill beat you upside the head with my spoons. Cry about it. From an onco mom of a dead 10 year old and a caregiver of my mom grandmother and mother of an autistic son. Wow. Just wow,

  • Guest

    I read this article over many times. I understand, I really do. I came here looking for a deeper look into how loved ones with these types of problems feel because I know that I can never really know. I guess my problem is that I know that everybody has spoons. Maybe because of your problems you wake up with twelve but even a healthy person can wake up with next to no spoons many days. A healthy person has no excuse so they are forced to keep finding spoons in their pockets. Many people with these types of problems are held up by healthy people. I don’t get the luxury of counting my spoons or planning where to put them. I am expected to have a limitless supply because all that stuff that you can’t do I must now make up for. Even if I don’t have enough spoons to carry you I still do. Even if I can barely stay awake I stand for you. I stand so you don’t have to because you call me healthy. I understand you are an injured fighter and I am in good shape but I am not given the choice to stay down as you are. I have to stand in front of you while you recover and take the hits. If I go down and don’t get up then we are beaten. I understand that you are weak and tired but stop counting your spoons and just stand up. Stop being your own worst enemy and stand with me. Please do not show this to somebody who stands while you are defeated. We know you are injured but please don’t have the guts to tell us that if you get knocked down 6 times you are done before the fight has even started. If somebody told me that, somebody that I loved, I would look at them knowing they already beat themselves. Then I turn to life duck my chin and keep getting up. Its not that I didn’t count my spoons because they aren’t there, I didn’t count them because I always have to find one more for both of us. I will always be there to help you up but you have to be willing to keep getting up. I won’t show you my spoons and please don’t show me yours. I love a Diabetic with everything I have. I suffer when she suffers. We win every time we find a spoon that nobody thought was there. The difference between a winner and a loser is a winner gets up one more time no matter what. Sick or healthy don’t try to hand me your spoon from the ground while i’m fighting for you. My thanks and love to all of the disabled that don’t let it leave them on the ground counting spoons. If you are offended by my thoughts tell it to those in your life fighting for you and those who share your illness yet still become champions.

  • JustAThought

    I read this article over many times. I understand, I really do. I came here looking for a deeper look into how loved ones with these types of problems feel because I know that I can never really know. I guess my problem is that I know that everybody has spoons. Maybe because of your problems you wake up with twelve but even a healthy person can wake up with next to no spoons many days. A healthy person has no excuse so they are forced to keep finding spoons in their pockets. Many people with these types of problems are held up by healthy people. I don’t get the luxury of counting my spoons or planning where to put them. I am expected to have a limitless supply because all that stuff that you can’t do I must now make up for. Even if I don’t have enough spoons to carry you I still do. Even if I can barely stay awake I stand for you. I stand so you don’t have to because you call me healthy. I understand you are an injured fighter and I am in good shape but I am not given the choice to stay down as you are. I have to stand in front of you while you recover and take the hits. If I go down and don’t get up then we are beaten. I understand that you are weak and tired but stop counting your spoons and just stand up. Stop being your own worst enemy and stand with me. Please do not show this to somebody who stands while you are defeated. We know you are injured but please don’t have the guts to tell us that if you get knocked down 6 times you are done before the fight has even started. If somebody told me that, somebody that I loved, I would look at them knowing they already beat themselves. Then I turn to life duck my chin and keep getting up. Its not that I didn’t count my spoons because they aren’t there, I didn’t count them because I always have to find one more for both of us. I will always be there to help you up but you have to be willing to keep getting up. I won’t show you my spoons and please don’t show me yours. I love a Diabetic with everything I have. I suffer when she suffers. We win every time we find a spoon that nobody thought was there. The difference between a winner and a loser is a winner gets up one more time no matter what. Sick or healthy don’t try to hand me your spoon from the ground while i’m fighting for you. My thanks and love to all of the disabled that don’t let it leave them on the ground counting spoons. If you are offended by my thoughts tell it to those in your life fighting for you and those who share your illness yet still become champions.

  • great-granny

    There are so many people around you that have invisible illnesses that struggle to just get thru their day. Learn to have patience and consideration for others. The general public can be so discourteous and sometimes even mean when they don’t stop and really see that person that is too slow or looks funny and give a little prayer of thanks that they don’t suffer like so many others.
    I have suffered with several of theses diseases since the early 70’s, at first I had many spoons but as the years pass I need more spoons every day. Thank GOD he gives me the courage to follow the leads allowed by the disease, some days it means I do nothing, sitting up, turning over in the bed, standing/walking, eating what my husband of 47 years fixes me, takes all my spoons.
    GOD walks with us and we must rely on HIM for out strength.

  • http://BeachChristmasLife.blogspot.com/ Fiona Barnes

    So in love with this theory! My husband has PTSD, and he said it was spot on. Thank you and best of luck!

  • http://www.gofundme.com/MERRIMANSTRONG Heidi Merriman

    Thankyou..I honestly would buy the written version or the poster and put it in my living rm and I dnt wnt 2 copy paste n print and infringe,but if u ever mke new ones and have one odd one or a torn one I’m ure gurl.xoxo

  • Cynthia Champlin Rand

    Great analogy using spoons as units of energy. This will help me . I also have lupus – as well as Sjögren’s, Fibromyalgia, chronic migraines, hypothyroidism, depression, & allergies. I also find that mental energy is a big issue too, and once I run out for the day, I can’t deal with another thing.

  • MJ

    I do too — just wanted to reach out & say you’re not alone.
    I am so in love with this piece I think I’m going to print it out and carry it around with me.

  • mohammed elgammal

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  • H. A.

    Let me say that this was an excellent way of elucidating the reality of living with a long-standing illness/condition – probably one of the best that I’ve seen. It’s very simple, yet because of its simplicity it hits home harder. I showed this to my brother (who has Type I diabetes) and he pretty much agreed with everything this article stated. Excellent concept – I had to share, just to see if it’d help spread some understanding, somehow.

  • kim

    how sad and frightening for you, Heidi. May God bless and guide you and your family. kim

  • LizzyB

    I have a young teenage grandson with an invisible illness. When you tell people what he has they look at you like you are crazy. He has to pick his “spoons” very carefully. There are days when he wakes up without any spoons and will have work at obtaining spoons for the next day. My prayers to all how have these illnesses.

  • Laura J. Davis

    Yep. That about sums up my life. I used up half my spoons this morning because I wanted to shower. Being sick with an incurable disease sucks, but like the author says you have to count your spoons and learn to live with an extra spoon in your pocket.

  • LizzyB

    It had me in tears. I have a grandson with an iv

  • Heidi Merriman

    This touched me deeply, as I have an extremely rare disease no one including Dr.’s have heard much about. So they don’t even know my symptoms, I have to tell them. It was also exactly what I go through,literally. I was diagnosed terminally ill.given 3-6 mnths 2 live,I’m 42 have 4 kids and no family, no help,gd friends that don’t understand. I have lived 2 years past my expiration date, but every day is so hard, will this be my last day? It’s I imagine it is similiar to having someone you care about missing, there is no closure until they come home or they find the body. But, I havent walked in those shoes. Thankyou for this.xoxo. Someone Else really knows how I feel, I was so alone!

  • Jacqui

    Thank you so much. It’s made me laugh and cry but it’s a fantastic way to tell people i don’t know how u thought of it. But thank you it means so much for you to share it with us.

  • Brenda

    Thank you for this. I have had MS for 18 years and now I finally have a way to explain my days to others.

  • Debbie

    Thank you so much for this. My daughter and I have Hashimoto’s thyroiditis and at least we have each other for support. I have had hypothyroidism for 18 years and she was diagnosed with Hasimoto’s 3 years ago. I was later tested and yes, Hasimoto’s disease for me too. Your letter explains exactly what we both go thru and yet people look at us and think we look ok and should be able to do anything. It is really maddening when trying to do the simple things in life like cooking dinner, oops can take away my last spoon or I will pay for it later. Love this so much.

  • Elizabeth

    I have panic disorder, for 30 years now, i developed fibromyalgia 20 years ago, i’ve suffered a long long time and i have often said you have to be bleeding from your eyes for anybody to believe the pain that i endure and understand why i can’t do everything anymore. For those reasons I was happy to read this because i felt less alone in the every day choices i have to make. thank you for this post. I won’t try anymore to get through to my friends n family, but i know there are others out there that understand all of this.

  • UJ

    Cannot have explained better…I am using your spoon theory from now onwards….Hopefully my dear ones will understand better

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    Qatif is located in the Eastern Province, which means the intensity of the heat and frequent Ancharalhacrat. It is scientifically defined to try to get rid of insects without specialization or expertise can cause extremely dangerous for those who do it and those around him in addition to not eliminate the insects fully where burrowing insects lay their eggs between the cracks and holes and places far from the eyes. There are also some insects do not see the eggs with the naked eye, such as bugs, which means the return of these insects again. شركة رش مبيدات بالقطيف Our specialty has been in the extermination of insects of all kinds using pesticides containing (water and oily liquids and granulators and fog), a completely safe pesticides on human health, but completely eliminate the insects it all at low rates. شركة مكافحة حشرات بالقطيف Of the most important ways when cleaning the tanks chasm isolate reservoirs with insulating material to keep them clean and sanitized To get the best results we have to resort to companies specialized in the field of insulation. شركة عزل خزانات بالقطيف Company offers Aseraa cleaning service reservoirs Qatif in order to obtain pure water clean and free of any contaminants. We do wash tank fully where we clean the roof of the tank well. شركة تنظيف خزانات بالقطيف Do you complain about the continuous increase in the water bill and does not know what the reason? Do you suspect a leak pipes, but you can not locate the leak exactly? Do you also worry about the excavation work and cost? شركة كشف تسربات المياه بالقطيف Zera for health and environmental problems that cause serious than the presence of sewage in front of houses such as foul smells and the rapid spread of diseases and other company has worked on Aseraa Tkhalaskm of this problem quickly and accurately. Our goal the first needs of our customers and valued care to their satisfaction. شركة تسليك مجارى بالقطيف Do you worry a rash of orchards? Did you experience this problem before? Do not overflowed Bayyara in time? Does it cause you many problems of unpleasant odors and a gathering of Baawwad and flies? شركة تنظيف بيارات بالقطيف

  • Sunshine

    I suffer from Chronic Treatment Resistant Migraines….thank you so much for this article, it is such a great tool for helping others understand

  • Kay

    Thank You for writing this a coming up,with this way of putting Lupus…..Maybe this will help my family & friends to understand more of what I’m going thru everyday…….Thank you……I was gonna share on Facebook for more to be able to read this and understand what others go thru but then I saw where you said not to copy,so I want.I plan to order a poster just as soon as I can get the money to do so with.Thank you so very much again…..and hope that you are having a great day

  • Guest

    Stop selling bullshit to people who are looking for hope. What you do is cruel.

  • Alisa

    It’s the same way for Lyme Disease.

  • Cheryl

    This story is such a gift! Now my friends and family can understand what I am walking through each and every day. Thank you!

  • mohammed elgammal

    Saraya offers a cleaning service in Jeddah, used company Aseraa for best cleaning equipment and cleaning machines of modern materials and chemical recommended by the Ministry of Health and also conforming to international standards. شركة تنظيف بالدمام We offer you Dear Customer the highest level of cleanliness will Tbhrk cleanliness of your home, we know that the villas and palaces of the difficulty in cleaning and the potential for insects to hide and that the capacity of the place and the difficulty of maintaining the cleanliness continuously. شركة تنظيف فلل بجدة Good news for the people of Jeddah Aseraa company offers the best deals and prices for cleaning apartments in Jeddah. We know that there are a lot of cleaning companies, but we are unique, we are giving you money and effort where we offer you the highest levels Alndhafah the finest types of detergents and cleaning the latest devices at unbeatable prices. شركة تنظيف شقق بجدة With Aseraa cleaning Jeddah Sthsaly at the highest level of cleanliness at low rates because we disagree about others first, we promise the leading companies in the world of cleanliness. شركة تنظيف بيوت بجدة Aseraa use in steam cleaning machines maintain the outer fabric of the Council And make it seem like new just because it works on the water pump and a hot burner. شركة تنظيف مجالس بجدة Tsar Aseraa company providing cleaning services rugs and carpets to our valued customers, as follows:
    1-stage washing carpets and rugs: where we are washing carpets and rugs with the latest cleaning devices Alagdith as we spend on the toughest stains without affecting the colors. شركة تنظيف موكيت بجدة
    Helped the spread of diseases, insects and microbes also threaten human health, so the company has worked Aseraa to exert maximum effort to get rid of our customers from all types of insect nets strong destroy it completely. شركة مكافحة حشرات بجدة Folk Company Aseraa elimination final on crawling and flying insects, mice, rodents, snakes, scorpions and other by spraying pesticides better world under the supervision of a group of chemists, engineers and agricultural. شركة رش مبيدات بجدة Company is Aseraa to isolate the reservoirs of companies that provide services quickly and efficiently is very high. شركة عزل خزانات بجدة Are you looking for a cleaning company in Jeddah tanks? Did you experience other companies but the result were not satisfactory? Do not worry we have a solution. Thanks to God we are the best cleaning company in Saudi tanks. شركة تنظيف خزانات بجدة Aseraa company used the latest electronic devices that serves to detect water leaks without cracking where these devices operate under pressure nitrogen, which works on the accuracy of locating the leak piped This provides more time and money wasted. شركة كشف تسربات المياه بجدة Company offers Aseraa entertain sewer service and which are blocked due to:
    1-throwing irregularities which led to the blockage of the sewer.
    2 throwing water containing grease Balbloat.
    3 neglecting both officials and citizens. شركة تسليك مجارى بجدة Hinder the problem of clogging shafts traffic may lead to complete paralysis in traffic flow also lead to the spread of insects and Kabasir flies and mosquitoes and also working on the spread of epidemics. شركة تنظيف بيارات بجدة

  • mohammed elgammal

    Get the best service from Dammam cleaning company to clean Aseraa months and the best among cleaning companies in Saudi Arabia. شركة تنظيف بالدمام Featuring villas and palaces spaces wide that are difficult to be cleaned easily, but with the company Aseraa for cleaning services there is no problem, we will clean the villa fully without leaving home beginning of kitchen cleaning and removing dirt and fat and wash the walls of the kitchen completely and kitchen cabinets, flooring and windows. شركة تنظيف فلل بالدمام Company provides cleaning services to Aseraa service to communicate with our customers throughout the day where you can Dear customer contact through twenty-four hours to get the best deals and discounts always renewable. شركة تنظيف شقق بالدمام The company Aseraa specialized in cleaning services using the latest equipment and the finest cleaning detergents, as well as the global recruitment of skilled labor and that we were the first company in the world’s leading cleaning. شركة تنظيف بيوت بالدمام The company Aseraa of the best cleaning companies in Dammam councils and boards is because the cleanliness of your home address using our latest tools and machinery devoted to washing boards. شركة تنظيف مجالس بالدمام Dear client we know the amount of time and effort that Tbzleh in washing rugs and carpets may not pray to the level of cleanliness which hopes for in the end. شركة تنظيف موكيت بالدمام
    Do you suffer from mice? Have you tried to get rid of them in every way, but you did not succeed? Did you get rid of them but you want to cleanse the place for fear of disease. شركة رش مبيدات بالدمام Dammam is the eastern region, known widely spread and the presence of insects, so the nature of the place and conditions of warm air. شركة مكافحة حشرات بالدمام Company Aseraa to isolate and tank cleaning with the latest equipment and modern equipment in the market by a dedicated team is capable of cleaning the tanks and isolated and the cheapest prices. شركة عزل خزانات بالدمام We are a company Aseraa the company’s first and leading all cleaning services in Saudi Arabia. Our mission is to maintain your health Dear customer, by providing all cleaning services and Mrs. Mubarak tank cleaning. شركة تنظيف خزانات بالدمام Cause leaks in the presence of water bills to pay and, of course, high-value increases with the increase in the value of the invoices leaks in addition to wasting large amounts of water may be enough to fill the water tank more than once and use it usefully instead of wasting water down the drain. Water is the gift of God’s grace and denied to many in other countries. شركة كشف تسربات المياه بالدمام Cause the spread of sewage in many problems, including the spread of nasty odors and the presence of flies and mosquitoes, which directly helps in the spread of disease and also cause the appearance inappropriately and more. شركة تسليك مجارى بالدمام We know that the problem of clogged sewer problem hinder your life fully. So we do our best to resolve it without any losses. Vtcelik sewer workers need to be trained and specialize in full so as not to make any cut or break in the pipes during wiring. شركة تنظيف بيارات بالدمام

  • Rozie

    why be so nasty?

  • http://rabbitsandfuzz.blogspot.ca/ Shadowydreamer

    And the question is.. how does a troll get internet under his bridge?

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