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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©2010 butyoudontlooksick.com
  • Lori

    Linkbacked to this article at http://chronicinvisibility.blogspot.com .

  • yvone

    Thankyou so much this helps me understand my sisters pain, she has Scleraderma

    and has days she cant do anything because her skin is so tight and her hands have turned either white or blue

  • Frenchie in Montreal, Canada

    Thank you so much for this! I have fibro and this is my day too! I feel SO elated that I now can explain this to my dad who speaks only French, thanks for the translation & thank God for you!!! <3

  • Nini Fire

    Mine is Epstein Barr. It’s even more misunderstood because 90% of the population technically HAS IT. It leads to Chronic Fatigue and Fibro symptoms but there is a difference between having it, and having it reactivated. Plus it can be chronic and different bodies process it differently. SO one person it may give a slight ache here or there. Another may be in bed for hours at a time. My energy goes up and down in big waves… it might be because I’m 24 and expected to be able to do so many things. Everyday I am in pain. I am tired. I have a foggy mind. But i keep going.

  • Herman Forstmann

    To add to the list of “spoon disorders,” I have COPD, and this describes my days, too. Some days, it takes all I have to remain standing for more than two minutes.

  • Afrodiseum

    This is very well done. It’s rather odd for me because I have lived with Lupus for thirty-one years now, and I have not had the kinds of Lupus experiences so many have had. Somehow, I have been blessed. Or perhaps, I simply don’t react the same way, who knows? This certainly gives me some insight to other Lupus sufferers who go through these kinds of experiences and I find myself confused because I’ve never had the same.

  • L.

    I have a very rare form of migraine called Hemiplegic Migraine. I just emailed this article to my boyfriend and to my family. It actually helped me understand myself better. Sometimes I am in denial about how much I can do, because I want to get better so badly. I long for my older self and the way my life used to be. It is very hard. Thank you! This was very uplifting.

  • Shay Barrett

    Wow this inspired me so much. This is crazy. I could never thank if a way to explain what it is like to have Lupas or Crohn’s. That was a great example

  • Lorrie Sabatelli-Harris

    so true.. Fibro is the same way..

  • Debbie

    Love this.I have multiple sclerosis and this explained my days exactly..Thank you for sharing

  • wheelchairindia

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  • Deborah Bruce

    Me too! Years of it, no doctors help, in fact I also developed doctor-itis. I turned this double edged sword into being useful by using my exagerated sensitivity to ‘read’ other people and help them with a therapy I invented for chronic pain. PFR is easy on the therapist and fabulous for the client.

  • Kate Ofikuru

    I am in tears about how precisely this describes my life. Thank you and God bless you.

  • Melissa Goodall

    Thank you! That is exactly how I feel. and it’s sooo frustrating sometimes.

  • ‘Chris Beres

    Every time you manically use spoons, you find out the next day that you pay for it. Days you wake up with extra spoons are blessings, continue to use them wisely, as every time I personally use extra spoons, I spend the whole next day in bed.

  • weejanis

    All I can say is Thank You. I have tried so many times to put into words what you have achieved with your wonderful spoon theory. I have R.A. fibromyalgia an underactive thyroid, diabetis and vasculitis. I find it difficult to explain to people just how I feel. Thank you for helping me find a wsy to tell others what goes on in my life on a daily basis and how low I can feel but at the same time how lucky I am.

  • [email protected]

    Latest research says body DOES grow new nerves, so there is hope.

  • Kristina Weatherford

    I try to hoard my spoons, I have Complex Regional Pain Syndrome, but it never works. So, I pick and choose what activities I will attend, save up what spoons I can, and rest up in the days afterwards. It is almost always worth it! I can’t let my disease define me!

  • Robyn P

    I read your story Katherine and you sound like a very determined young woman. I wish you the best of luck on achieving your goals and I hope you find more compassion from people.

  • Julie Kasner

    What a great article, thanks for sharing your experience. I have a condition that effects about 1 out of 3 million. It is a chronic form of Miller Fisher syndrome that is a cousin to Gillian Barre syndrome. I spent 6 weeks in the hospital and nursing home this last fall. I have weekly IVIG infusions that help with my overactive immune system but it is not a cure. It leaves me with flu like symptoms such as muscle aches and fever, chills, loss of appetite. My nervous system and spinal cord have been badly and irreversibly damaged by my immune system. I have a team of about 5 specialists that I regularly see to manage my pain and other symptoms. I have always had a difficult time explaining to people that I look well right now but underneath I have a severe and life threatening illness that challenges my life in every way. I celebrate every milestone that I reach in my recovery. This week I was discharged from home health and now I am ready for out patient physical therapy. I should mention that I have been paralyzed from this illness 3 times in 2 years. Each time I have to retrain my nervous system to eat, swallow, pee, walk, how to hold a pen and sign my name. i live in fear of the day that I have used all my pathways and have no more left to do these things. The body does not regenerate nerves and the damage to each nerve is permanent. I know my clock it ticking and am grateful that I have enough spoons to get through each day, I am no longer wasting any spoons but see each one as a precious gift.

  • Georgette B.

    Usually when I have a mountain of spoons it’s for a reason. Majority of those reasons is to be a blessing to someone else that day. I don’t dred anymore what tomorrow will bring. Because I know who really holds my spoons the Lord God Almighty. I don’t see being ill has a curse anymore but has a beautifully misunderstood blessing. I have narcolepsy/cataplexy and high blood pressure to boot.

  • Angela

    So here’s the thing. You wake up one morning and you feel … wow … You feel like you have a mountain of spoons and the possibilities for the day are endless. Do you:
    Spend the day wallowing in your spoons. Not using very many but just enjoying the fact you have them.
    Go on a manic spoon usage convinced that they are going to all disappear half way through the day so you need to use as many as you can before that happens.
    Hoard the spoons, holding on to them tight in the hopes you can stop them disappearing. Every spoon you use feeling like it might be the last one. How can you trust that there are so many spoons?

  • …..

    and sadly it was not lupus but lyme…..

  • Casey Shelton Cognito

    I really appreciate this article. It brought tears to my eyes. I was diagnosed with Systemic Lupus when I was 16. I thought the doctors were crazy because at that time I just had painful joints, mainly my hands. I though it was arthritis, my hands had hurt most of my “young” life already. So I shrugged it off. Years passed, things got more difficult and at 23 I had such a flare that I could not walk. To a doctor I go. Before he could even give me the diagnosis, I said “It’s Lupus isn’t it?” I told him about my past diagnosis. I cried all the way home. I have learned to “pace” myself. I know that I cannot do the laundry and sweep the floors in one day, one will have to wait untill tomorrow. And to just “hop” in the shower…sounds so easy… but It’s not. I always have to think of the reprecussions that what I do today will have on me tomorrow. It is do-able, but exhausting. Thank you so much for this explanation.. It kind of helped me undersatnd myself better as well.

  • Christopher Shaw

    Thanks so much for giving this theory to all invisible illness sufferers, it is as near a perfect explanstion of what it’s like to live this way, as you could have gotten! I have Haemochromatosis, a genetic disorder which causes your body to overload on iron, thereby creating many secondary problems, such as various forms of arthritis, organ damage, muscle and joint pain, to name a few. Most people, and even a lot of Doctors don’t realise how living with an invisible disease can impact your life, but this explanation is a brilliant way of showing them the reality of it.

  • Patty

    Thank you so much for this. I have POTS. This is my 14th year. I love the way you put this into such a tangible explanation.

  • Karen

    I have Narcolepsy and it took me several attempts to finally finish reading this because I doze off when reading anything. Thank you so much for this. I gladly gave up a spoon (or a few spoons) to read this.

  • Katherine

    Thank you so much for this essay, it inspired me to tell my own story: http://zebraturnedtiger.com/2015/02/08/searching-for-spoons/ …if I hadn’t read this, i would have thrown my last spoon out the window tonight!

  • Angie Wise Kirkham

    Thank you for this. I get it. I have Fibrous Dysplasia, which is not Fibromyalgia. People confuse it because the names begin the same I guess. It is a rare bone tumor disease. I say that it is difficult to look this good and be this broken on the inside. I don’t really look that good, but apparently don’t look bad enough to be carrying tumors around. Thank you. Thank you.

  • becca

    I have epilepsy, and this is a thing I’ve used for a couple of years, to get across to some people what is going on with me, when I say “I can’t.” Thank you.

  • Ceri Deane Richardson

    This makes so much sense. To try and explain to someone that showering is enough to floor you for a couple of hours can make little sense. And as I do not look sick, on the outside anyway, people assume nothing is wrong. Just because I smile, be polite or make an extra effort to look presentable if I have a meeting, doesn’t necessarily mean I have more spoons that day. But I love the simplicity of how this can bring home what it is like to live with an invisible illness day in day out.

  • kells

    I have fibromyalgia, lupus and a few other conditions this is a spot on definition of how you can make others see just what I have to contend with every day, I know people who waste a lot of spoons- mine are vital because without them I couldn’t care for my son properly. So the next time people say those stupid words ‘you don’t look I’ll or how does it affect you day to day I’ll be reaching for the spoons and see how easily they can cope….especially if it’s a bad day and they only have a couple of spoons.

  • Kay

    I freaked when my mom made the comment that my Dr. was just throwing pills at me!! Really???! She would cut out articles about diet, exercise, wt loss, etc……that really hurt. I am blue in the face trying to explain it, so quit.

  • Kay

    My meds put on all of the weight I had lost before needing to take them for pain relief, anxiety & a major depression! Trying to lose 25+ lbs with limited exercise…..limiting my intake/day is a challenge in itself!

  • Kay

    I find a sisterhood on the FB & other blogs…..I, too, have lost everyone except a few….even family!! I guess the main point is to keep going & not lose hope…..I also hope for more research & knowledge for healthcare providers!

  • Abby Alab

    now i know what is the “Spoon Theory” all about. i have Rheumatoid Arthritis and it is very difficult dealing with it everyday..thanks for this now i know how to explain it for other people how i truly feel…

  • Leigh Scott Pope

    Sleep Disorders. To many people I know I come across as “always too tired” or “can’t move to get out of bed”, or have to miss a lot of work because I am falling asleep standing up (I’m a high-school teacher!)…. They all sound like excuses from someone who is just lazy. In addition to the Spoon explanation I would challenge anyone who doesn’t understand this unseen illness to try this:

    Go to bed at 9pm.
    Set an alarm to go off every hour for 2-3 hrs and on the third alarm, get out of bed and stay awake. Go about your full day. Return to bed at 9pm. Repeat the alarm schedule. After 2-3 days evaluate how you’re feeling. Chances are that you’re feeling pretty run down. Continue to follow this routine every day for 20 years.

    Welcome to the wonderful world of Obstructive Sleep Apnea, and Narcolepsy (and those are just two of them). The list of secondary conditions is extensive

    Yet I “don’t look sick” because “sick” means vomiting, diarrhea, chills, fever, –you know, illnesses with external signs and symptoms. The human body has a lot more that goes on inside than outside, so please be sensitive to people who may seem unproductive, always tired, etc.. It’s not an excuse. It’s a legitimate problem for which only symptoms can be treated; there is no cure.

  • CodyCat

    Indeed, this applies to fibromyalgia. It is so difficult for people to understand. sp after 10 years with this condition, I just gave up having friends. I have a few phone friends and some email friends, but after the third person in my life called me selfish because I couldn’t do what she wanted, I knew I couldn’t go through the pain of rejection anymore. I love reading, I work from home, and I have loving critters who live with me. What more can I ask? Thanks to Christine Miserandino, at least I can explain it to those who ask.

  • Jeanne Szabo

    Oops, hit the wrong key. This may also be applied to fibromyalgia, making choices and sometimes knowing your friends (who know & understand) can do some things or go somewhere when you have to rest at home. On “good” days I tend to over do at times and then I lose the next 2 or 3 days, as I am sure you have done also. Thank you so very much for having the insight and words to communicate all these emotions and reasoning.

  • Jeanne Szabo

    My 31 yr old daughter was just diagnosed with lupus last week and she is devastated. I am going to send her the link to your site so she can understand what she needs to do in order to be able to do things others take for granted. I have fibromyalgia and your Spoon Theory may also b

  • Lana

    I really love this article. I used to waste time when I was younger. Now I have an anxiety disorder and vasovagal syncope as well as other chronic problems due to my history of eating disorders. I’ve had many very very terrifying moments in the past, and even now I have bad days where I end up frustrated at myself. But after living in a world where you have only a limited amount of energy per day, I’ve accepted that I can’t party until midnight but I can spend my quality energy on the people I love. Plus, I have friends, family, a team of doctors that make sure that I can live as happily as possible, and I have God. This has restored the gratefulness that I used to overlook as a child, when I had as many spoons as possible.

  • Julie

    I, like most people here, have multiple problems, various forms of arthritis, fibromyalgia, etc etc. but I am also heavily overweight – in part because of the problems – and the ‘well, you deserve to be ill’ responses are so debilitating. Being told you look healthy as an ox when you feel sick as a dog will also have the opposite effect to that intended.

  • Schnitzelpizza

    Especially as a thyroid issue shouldn’t be knocking you out like that. Everybody knows somebody who has hypothyroidism and it isn’t really a problem at all, you just take a pill and it goes away. And as their great-uncle’s cousins’ best friend’s ex MIL can do it, you should be able to do it too and just stop complaining. Just take your pills and shut up. Oh and exercise more, that will give you extra energy. And eat better, it’s really not a big deal to make a healthy meal every night, it only takes an hour or so.

    Oh if it only worked like that *sigh*

  • BHernandez

    Wow!! I love it. I have Chiari Malformation and Diverticular Disease some days are better then others. I know everyone that’s doesn’t truly understand my illness think I’m sick at all. Everyone always wants me to keep going and going and I push myself to please everyone, but I’m only hurting myself. Thank you for this.

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

    We DO have similar. The problem is, it’s considered if you’re well enough to be a student, you’re well enough to work and don’t qualify for full support.

    No idea why the lady ran into such individual issues, but I’ve found dealing with bureacracy, particular a post-secondary institution’s, you have to be forceful and persistant .. which I think we all know is really hard when you’re in constant pain physically and drained mentally.

  • CHmomma

    What makes it worse for me is that I can be ‘healthy’ and not have to count spoons for months at a time. But then I have months where I wake up with no spoons. People say that I’m just lazy, that if I would just be more active I’d be fine, and that since I am seeing a doctor regularly I should be ‘cured’, and on the same note that I see a doctor too often!! Also, I’ve been told that what I have is “no big deal” (congenital hypothyroidism – born without a thyroid). I can’t possibly be sick because I was fine yesterday, it’s all in my head, etc.

  • http://deevranorling.com Deevra Norling

    Wow – really makes me realise how I take being ‘healthy’ with an endless supply of ‘spoons’ for granted. Thank you for explaining it like that. Very sobering. Wishing you all the best!

  • Barefoot in MN

    wow… kudos for your persistence… sorry apparently in Canada you don’t have a Disabilities Act…. here there are many ways the handicapped are acommodated… I take off my hat to you.

  • Sam Derrick

    That’s brilliant, I have IBS, dodgy spine with osteoarthritis and more recently the development of a hiatus hernia, this is the perfect way to describe how it is to live with chronic, incredibly tiring conditions, thank you!

  • Jacklynn Castle

    This is a wonderful and much easier way to describe my life to others who say “But you stay so busy, you don’t act sick at all!” I don’t have Lupus, I have EDS. Except for when I am all “bent out of shape”, you could never look at me and tell. I look like a “healthy” 33 y.o. woman. Still, some days there are just not enough spoons! As for borrowing from one day to the next, I still haven’t figured out how to tell my best friend, my sister, my husband, “But I used that spoon yesterday.” It’s nice to know that I am not alone; I will be praying for and thinking about all of you “Spoonies” out there!