Warning: This is not a funny post. It is about chronic illness. I’d really like you to read it. I promise I’ll attempt to be funny next time. I’ve been dealing with a lot of health issues this past week and I’ve felt very helpless and misunderstood. I want you all to know that I am not asking you to feel sorry for me. I don’t want anyone to pity me. I just wish everyone could understand what life is like with chronic illness and the Spoon Theory, I think, is one of the better ways to describe it.
The Spoon Theory basically says that with chronic illness, you start the day with a certain number of spoons, when a healthy person would start each day with an unlimited amount.
Pretend you wake up and you have 12 spoons.
It costs you a spoon just to get out of bed because your entire body is one giant ache and you never feel like you got any sleep. Next you have to walk down the hallway and wake up the boys and get the daughter’s clothes for school. This costs a spoon because this early in the morning you have the most intense pain and sometimes can barely walk. You have to use one hand to uncurl the other hand because they don’t want to work yet. You can hardly lift the coffee pot to pour coffee. You think about asking your husband for help and then feel guilty because he is going to work and you are not. It costs you a spoon to get yourself mentally under control and continue getting the kids ready to go to school. If you made lunches the night before that’s good, but if you were too tired then you have to do it now and that will cost you a spoon because of all the bending and walking and you are still in a lot of pain.
The kids and husband leave for the day and you are left with 8 spoons. The house is a mess. Do you have to go anywhere today? If you do, you can’t do anything else because driving and running errands or just running around town will take all the rest of your spoons. All of them. You will be in so much pain and so exhausted by the time you get home that you will be unable to do anything else.
This day, let’s say you get to stay home. So you do the dishes and maybe start a load of laundry. Take away a spoon. You need to think about your depression and do something positive so you will color or write in your journal or meditate or do yoga. This costs at least one spoon, depending on what you decide to do.
Remember, you haven’t showered, gotten dressed, or even brushed your teeth yet. You get dressed and brush your teeth and you are tired, so tired. It costs a spoon.
You’ve got 5 spoons left and it isn’t even noon. The house is still a mess. If you really, really clean it, it will cost all of your spoons for today and probably some of tomorrow’s. You need to eat but you are so nauseous that you can’t, plus you hate to waste a spoon just to feed yourself. You decide to watch t.v. for a while and rest. You think about taking a nap, but you can’t because you are too anxious and feel like you can’t breathe. It costs a spoon to get your anxiety under control.
You have 4 spoons left. The house is still a mess. You still have to figure out something for dinner or maybe your husband will bring something home. You better have him bring something home, because you will have to use at least 3 spoons to check the kids’ backpacks, sign papers, help with homework, and generally be present as a mother when they get home. You won’t be able to make dinner, and since you’re still nauseous, won’t be able to eat it either. It is 7 pm and you’ve only got one spoon, but your daughter still needs a bath and you didn’t even shower today. You still have to pack lunches and make the coffee for in the morning and your husband hasn’t gotten any of your attention. You feel like a failure as a wife and a homemaker and a mother. You feel so sorry for your family because you don’t have enough spoons to do everything you want to do for them. The stress leads to a migraine. You are down for two days, crying and throwing up and maybe going to the emergency room. This takes all of the spoons for those two days, and possibly some from the third day because you are exhausted after such a bad migraine.
So that’s basically the spoon theory, and basically my life. I didn’t mention allergic reactions, and I think I actually spend more spoons on managing my health and depression, but you get the idea.
It takes all my spoons just to get through a day doing the bare minimum. If I want to take the kids somewhere fun, that’s all my spoons. If I want to go out to eat with a friend, I have to realize that I will not be able to do something else. If I have a doctor’s appointment in the afternoon, I better lay down all morning.
I have a really hard time dealing with my health. It makes me incredibly sad to not be able to do the things I want to do. I hate having to plan my day around what I feel physically and mentally capable of. I hate that I don’t have enough spoons. I hate that by looking at me, you can’t see how hard I fight every day. I hate thinking that people think I am hateful or lazy because I don’t do things and I cancel plans all the time. I hate that I have to budget my energy and my time.
The Spoon Theory was written by Christine Miserandino at www.butyoudontlooksick.com. You can check it out at http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Does The Spoon Theory apply to you? If so, what things do you do to stay positive, knowing that you’ll be counting spoons for the rest of your life? Do you find that you judge yourself more harshly than anyone else does? I know I do. Don’t you love my nail polish?
**EDITED TO ADD: I love each and every one of you. I swear I feel stronger with every kind comment and it really means so much to me that you take the time to send me your thoughts. I might cry, guys. You are all my favorite.
We Don't Chew Glass 
October 5th, 2014 at 1:10 pm
I’m an insulin dependent diabetic. A different level of spoon theory, but I know what you mean.
Chronic illness is a never ending battle that you never can win – it can only be held at bay for another day.
But we push on, because there’s more to see and do, a and people that love us and count on us. And there are a lot of us that know just what it’s like that we can lean on when it’s a bit too much.
Rock on, Steph.
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October 5th, 2014 at 1:33 pm
Thanks so much. I needed to read this. You too. 🙂
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October 5th, 2014 at 1:48 pm
That’s also probably the wordiest I’ve been in a comment in quite a while, so congrats on dragging that out of me. 😉
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October 5th, 2014 at 1:54 pm
I’m honored!
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October 5th, 2014 at 1:32 pm
I do love the nail polish!
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October 5th, 2014 at 1:33 pm
HA! Thanks so much, so do I!
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October 5th, 2014 at 1:32 pm
As an epileptic with kidney disease, pelvic prolapse, and chronic depression, I HEAR THIS. I HEAR IT VERY WELL. ❤ Love you Steph. Love you so hard.
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October 5th, 2014 at 1:39 pm
Aw, I love you so hard too! You don’t even know!
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October 5th, 2014 at 1:33 pm
Dang, Steph… 😦 All the way reading this I wanted to offer advice – drink more water! Stay off coffee! Check out flylady.net! See how sneakily I slipped it in? But truly it wasn’t meant that way … because even as I was thinking those things, I was playing them back in my own head, and remembering just how annoyed I get when I talk about how frustrated and desperate I feel, being so damn HEAVY and ALWAYS TIRED and so much OLDER than the calendar says, and secretly worried that there’s something serious wrong – only I don’t have medical insurance so I pray some and hope for the best the rest of the time, and mostly just feel like a fat, ugly, boring failure because some days I simply cannot get it together, and on the days when I do get it together it’s never quite enough. No matter whose advice I follow, even my own. No matter how much I want to do more, be more, LIVE more. And then I read this and I think … dang, Steph, I’m so sorry. I wish I could help.
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October 5th, 2014 at 1:41 pm
You are not a failure, and neither am I. We just have to do the best we can with what we have and that’s all we can do. *hugs*
P.S. I’m going to get a glass of water RIGHT NOW, lol.
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October 5th, 2014 at 1:34 pm
Oh, and also, your nails are tres chic. I like the spoon on the far left too … 🙂
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October 5th, 2014 at 1:42 pm
Thanks! 🙂
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October 5th, 2014 at 1:34 pm
If I lived close enough, I would come over and clean your house for you. I have the energy to do anything for others (Girl Scout leader, PTO board member, etc etc), but when it comes to facing my own personal tasks, I can’t do it. It’s a weird effect of my depression, that stems from a childhood need to be accepted and embraced by everyone, so I can do stuff for everyone else, just not for me. Although my ADD forces me to do some things–if I don’t remember to put my keys and wallet in the same place, I will spend hours hunting for them. So I’m not neat as much as I’m systematized and rigid. You know, when I signed up to be an adult, this shit was NOT what I had in mind.
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October 5th, 2014 at 1:44 pm
Dude, I would *totally* let you clean my house, lol. I have this face that I put on for the world, like I’m okay, don’t worry about me, but then at home it’s like I just deflate. I guess I use up so much energy trying to be what I think everyone expects me to be. This shit was NOT what I had in mind either. Can we just be kids again?
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October 5th, 2014 at 1:56 pm
I wish I could share some of my spoons with you. People don’t understand, and often don’t accept, what they can’t see- that is a reflection on them, not on you. You did nail the polish!
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October 5th, 2014 at 2:37 pm
Thank you SO MUCH. I need to remember that. I often feel very judged, but I also know that I’m imagining most of it because I feel so guilty about what I can’t do. I’m trying really hard to focus on what I CAN do. Thanks again.
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October 5th, 2014 at 1:58 pm
I too am a spoonie.
I think making the people around me aware of my spoon supply helps. I have been dealing with chronic illness for over 10 years now, so I have progressed mostly past feeling guilty about it. I do feel guilty when I flake on Christmas packages (most of mine went out after Christmas last year for the first time ever), or when I don’t do blarg posts… but in my private life, everyone knows that I never promise my time to anyone because I never know how I’ll feel.
I would write more but I have a headache that I woke up with that is tearing my face apart.
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October 5th, 2014 at 2:40 pm
I knew you would understand. I need to do better about that. I have a hard time explaining how I feel to the people closest to me, because I all the time feel like I am letting them down or complaining. I think I wrote this out so that some of them could see and maybe understand me better. Then I didn’t share it on facebook because I’m a chicken, lol. I hope your head feels better soon! I hate those.
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October 5th, 2014 at 2:01 pm
Nice nail polish Steph. Spoon theory is a good way to help healthy people understand what it’s like to struggle. Thanks for sharing 👏
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October 5th, 2014 at 2:40 pm
Thank you! I love it – both the nail polish and the spoon theory. So glad to have stumbled across it and been able to share.
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October 5th, 2014 at 2:06 pm
This feels like me since I developed my sensitivities, but it’s not quite so bad for me. I am glad to have some insight, but wish it wasn’t so rough for you.
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October 5th, 2014 at 2:41 pm
Thanks. I know other people have it so much worse, and I hate to feel like I’m complaining all the time, but I do wish people understood better what it is like. You are a sweetheart.
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October 5th, 2014 at 2:18 pm
I absolutely get this, and I’m so sorry you’re having such a hard time. I don’t have pain issues, but my fatigue is awful. I have mental health stuff that is supposedly well-managed, but I feel like so much of my energy (or spoons) goes into managing it, in addition to my kids, house, family, etc. I appreciate you sharing this and I really needed to read it today. It’s beautiful where I live and my husband is annoyed with me because I’m not out enjoying the weather with him and our two kids. Well…last week my 5yo had a stomach virus, then I got it. Thankfully that was quick but 2 days later I woke up with a sore throat and have just felt worn-down ever since. Yesterday I decided that I was declaring myself well, went outside and after 30 mins I began itching and my throat got sore and scratchy and my eyes began to water. I’m pretty certain whatever I’m dealing with now is allergy-related, but going outside makes me feel so much worse. But of course all I feel like doing now that there’s no one home to care for is stay in bed. I know that I have to be able to function tomorrow because my husband is not around much during the week so I have to be “on” all the time, so I see what I’m doing today as kind of preserving my energy (spoons) because I’m gonna need extras next week. Again, I needed to read this — makes me feel less alone. Feel better and thank you!
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October 5th, 2014 at 2:50 pm
I needed to read this, too. It DOES make it easier when you know you are not alone. I hope your husband begins to understand – I hate that he is annoyed with you for “saving” your spoons. That has got to be so hard. My husband is pretty good about it, but I still feel guilty and like I let him down a lot. You feel better too and thank YOU for commenting and making me feel less alone!
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October 5th, 2014 at 2:18 pm
Hi gorgeous, I am thinking of you and hope today you have a big ass stack of spoons or if not, I hope that stack is coming soon.
Thank you for sharing, Steph. I can’t imagine what it must be like to deal with chronic pain. I expend a lot of energy containing anxiety and depression and I am grateful that my physical pain is minimal and sporadic.
You are so much not a failure, gorgeous…you’re a warrior. With really cute nail polish.
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October 5th, 2014 at 2:44 pm
It does take energy to fight those battles! I feel like I spend so much of my time making sure that I’m mentally okay…I’m trying to be better about seeing my depression and anxiety as a disease, like diabetes, that I have to manage. It won’t just take care of itself, but…it’s hard. I feel for you. And thanks, I LOVE this nail polish. 😉
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October 5th, 2014 at 3:53 pm
Spoon theory definitely applies to me. My friends don’t understand this and I (foolishly) agree to plans with them later in the day and cancel every. single. time. and always feel like a horrible person.
My dad was talking to me the other day about what “normal people” do and how I should be able to do a certain amount of chores every day and I started crying. Which in itself took away one or two spoons, leaving nearly none left over for the chores he was speaking about.
And I’m not even in the midst of depression right now, I’m kind of “stable”.
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October 6th, 2014 at 6:21 am
I’m so sorry to hear that you have first-hand experience with this! I hear you on the canceling; I feel so bad. My husband says I should just start saying no and then surprise people if I’m able to make it. I’m working really hard on trying not to judge myself based on what someone else is able to do.
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October 5th, 2014 at 4:49 pm
I try to find something in me to do the little bits to keep going, like color or write or read a book or play with the cat. And mostly I try not to beat myself up too much. For me, if I can keep from getting too wore down mentally and physically, I can usually bring myself back up a little by doing something positive. But we’re all different and I’m nowhere near as bad off as a lot of my friends are. Invisible illnesses are THE SUCK.
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October 6th, 2014 at 6:23 am
Aren’t they though? I’m working a lot on doing things like that and to be mindful of what I need and how I feel. I’m not there yet, but I’m working on it.
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October 5th, 2014 at 6:25 pm
This post made me cry, because I know. I live my own version of that every single day.
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October 6th, 2014 at 6:24 am
Right? I feel like a really old car that takes a lot of maintenance and TLC to even start, let alone drive.
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October 6th, 2014 at 6:25 am
Me too. I’ve already used 3 spoons today.
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October 6th, 2014 at 4:06 am
Oh Steph. I have chronic pain, but it’s the result of surgeries and aging, it’s just my husband and me, and I’m able to stock up on spoons when time with adult kids and grandkids is coming up — something you can’t do when raising a family.
My sincerest wishes for a few hours of less pain, and an extra spoon or two at the end of the day to enjoy a cuddle with your kids or husband.
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October 6th, 2014 at 6:28 am
I hate chronic pain! I’m glad you are able to take time to take care of yourself and stock up. I feel guilty a lot for all the time I take taking care of myself when I have three kids to take care of, but you have to put your oxygen mask on first, right? At least that’s what they tell me. Thanks so much. I think I’m gaining spoons just reading all these comments!
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October 6th, 2014 at 5:15 am
I’m so sorry, Steph. I would offer a joke here, but it doesn’t seem appropriate. Plus, the coffeh hasn’t kicked in yet.
Know that you have my support. Dealing with depression alone is a monumental task. I can’t imagine having to deal with depression AND chronic illness. You are a warrior.
Stay strong, my friend.
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October 6th, 2014 at 6:35 am
Thanks, TD. I don’t often feel like a warrior. Depression is an asshole, isn’t it?
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October 6th, 2014 at 6:35 am
Yes, yes it is. Were it a physical being, I’d kick it in the nuts…
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October 6th, 2014 at 12:52 pm
Oh honey. This is enlightening and it makes me sad. Even those of us who are healthy don’t have *unlimited* spoons, but it’s a very clear reminder that if we are healthy, we are blessed to have so many more spoons than others. I will take your post to heart and resolve not to squander the spoons I have.
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October 7th, 2014 at 7:46 am
I know that I have more spoons than others do too. It’s hard not to want even more though. *hugs*
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October 6th, 2014 at 4:20 pm
Suddenly my cough and cold that seems to be recurring doesn’t seem so bad anymore. Sending heaps of hugs your way – and wishes that I could share some of my spoons with you xox
Me
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October 7th, 2014 at 7:47 am
Thank you! I’m sure your cold is using up your spoons too. Someone just pointed out that even healthy people don’t have unlimited spoons, and that’s true. I hope you feel better soon!
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October 6th, 2014 at 6:28 pm
Argh. I want to give you all the spoons that ever were. I hate to hear that so many seeming ‘normal’ things in life are such a battle, and that on top of it you worry that people don’t understand or think you’re canceling and blowing them off. This is a great illustration though, it explains it well. And I hope the people in your life can understand it well enough that you can at least not have that worry on top. Be well, Steph! You are allowed to be serious or hilarious or anything because we will all adore you just the same.
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October 7th, 2014 at 7:48 am
Thanks Aussa. For the most part the people in my life are great – my husband is amazing. I adore you too!
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October 6th, 2014 at 9:09 pm
Steph, while I can’t presume to know how you are feeling – I imagine that you, like me, are posting because this frustration and emotion just need to come OUT! While knowing you have love and support of your readers is nice (and you know you DO have all that love and support), it’s frustrating to have to even write about your trials, because you want to be funny, happy, healthy – not in pain and depressed. But it has to come out, because just the fact of writing and expressing it makes you feel a little better – maybe it even gives you a teaspoon back into your emotional arsenal.
Don’t feel guilty about writing when you are down (I know – it’s like the pot calling the kettle here). I wish I lived in your town so I could come over and spend some time on the weekend or after work and help you out (I love the cleaning and organizing – when it’s not my house!) I guess my big piece of advice (since I’m so presumptuous that I think you might want it) is to not be afraid to ask for help. I know it has to be demoralizing and frustrating, but if you feel that you have to do everything yourself and you just can’t (and who of us can?) then you start feeling even more depressed and like a failure. Reach out to your support – people in your family, your “in real life” friends, and even those of us in the blogosphere who can at least offer emotional support. We do care about you!
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October 7th, 2014 at 7:51 am
You are so sweet Jana. Thank you. It *is* hard for me to ask for help, especially with things I think I *should* be able to do. I hate feeling like I’m putting so much stress and added work on my husband and my family because I’m sick. And you’re right, sometimes it just needs to come out. I call it word vomit. It does make me feel better to just get it out. *hugs*
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October 7th, 2014 at 2:17 am
Sometimes, when I feel like I’m all outta spoons, I come here and read some of your stuff again, like shit your kids say or something, and it’s like finding a spare spoon. You’re so not useless Steph when you bring a smile into our lives and explain something like the Spoon Theory. 6’3″250lb hugs comin your way (and a spoon) love Red
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October 7th, 2014 at 7:52 am
This just made me so happy! Thanks so much. You don’t even know. *hugs*
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October 7th, 2014 at 7:55 pm
I read somewhere that the people who share the most laughter keep the most suffering. I think it is true. I want to make people smile every chance I get, even when I feel that I am dying inside. I have depression and anxiety and fibromyalgia and a some other issues that make things exceedingly difficult for me, but I try as hard as I can not to reveal just how bad things are and to never, EVER come across as whiny. I get so sick of the way people seem to think I am choosing to be this way, that somehow if I just suck it up, it will all go away. The looks, the ‘helpful’ tips, all of the crap that comes with having pain no one else can see. The way the world makes you start to wonder if, in fact, you are making it up or exaggerating or whatever. Like you said, I do not write this to get pity. I just want you, and everyone else with invisible illnesses/issues/etc, to know that that there really are other folks out there that get it. They don’t think you’re a wuss or crazy or any of that. Hell, I need to hear that too. I think it is amazing when someone is brave enough (and it takes so much more bravery than anyone realizes) to reach out, in any way they can, to remind both sufferers and bystanders that these problems are real and far more wide spread than most realize. Thank you for reminding us. For being brave. And for fighting through every single day, spoons be damned. Careful hugs to you!
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October 8th, 2014 at 6:02 am
Everything you just said, yes, yes, and yes. We have a lot in common. I don’t feel brave for posting this – I feel ashamed. And I hate that. You just put everything I’m feeling into words. Thanks so much. Careful hugs to you too.
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October 8th, 2014 at 11:18 pm
I would tell you not to feel ashamed, since you shouldn’t, but I won’t. Cause I feel the same way whenever I post anything about any of my problematic issues. So I know that hearing people tell you that you don’t need to be ashamed does not help in the least. I mean, we’re not idiots. Logically, we know there is nothing to be ashamed of. Unfortunately, that knowledge does not eliminate the emotion. But you are brave. Every time you admit you struggle with these things, you are brave. Every time you admit how hard things are, you are brave. The fact that you posted this even though it was uncomfortable and difficult and shameful for you, that is being brave. Shit, you should get a cape and a shnazzy super hero outfit! Ooh! With glitter and bling galore! Then you could, like, look all fabulously awesome AND brave. And whenever you hear someone say anything stupid like, “Well, just don’t think about it” or “You should just get over it” or anything similarly moronic, you can bitch slap them with some kind of nifty weapon that would be kind of like Wonder Woman’s whip, only way cooler. Sorry, I think I just got a tad carried away there. It would be pretty bad ass though, wouldn’t it?
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October 8th, 2014 at 5:24 pm
I have never heard this theory before. I love it. And it also makes so much sense in my life. I have a ton of health issues and I am constantly beating myself up for not going out and meeting someone when it takes all my energy some weekends to just buy groceries so I don’t starve to death. I think we all need to be kinder to ourselves and each other.
PS: I HATE “you don’t look sick.” Even when I was in the hospital having heart surgery I did not look sick. I looked young and healthy and vibrant but I was dying. And it is even worse for emotional/mental health issues because there may not be any physical indicator at all. But this all goes back to the kindness thing. It is one of my mottos.
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October 8th, 2014 at 5:33 pm
I’m so glad you like the spoon theory. It just fits, doesn’t it?
I hate that too, so much. Right now I’m not in a good place and every day is a struggle, but I guess looking at me you couldn’t tell. I’m trying to be nicer to myself.
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October 8th, 2014 at 5:40 pm
I have this horrible thing where I can joke on my blog about the little things but the big things just eat me alive and I feel like nobody will believe me because who can possibly have that much shitty things in their life. And also I am supposed to be the funny one. So I keep it to myself instead of being Debbie Downer. And I am scary good at shutting my feelings off and robotically living my life like it’s all okay.
But you are one of the funniest people I have ever ‘met’ and I can tell you that your stories have gotten me through some hard days. I am glad I found your blog. And even not funny posts like this help because it sucks that other people have the bad stuff, but it is also kind of nice to be understood and not be alone. You know?
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October 8th, 2014 at 5:59 pm
Wow. Thank you SO MUCH. That really means so much to me, especially coming from you. I joke a lot in my real life, even when I’m at the therapist, I’m making jokes about how shitty I feel. I hate that you can identify with this post, but at the same time I’m glad that you “get” it. So, yes, I do know. *hugs*
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October 8th, 2014 at 6:04 pm
You are one of the few people I would hug. Even virtually. *gently hugs back*
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December 15th, 2014 at 10:31 am
I may not fully understand what you go through everyday, but please, accept my love. BIG HUG just for you. Let us pray: Dear Lord Jesus, I thank you for Steph and for helping her be a strong woman. I pray that you’ll heal her of chronic illness and help her be the best for herself, her family and friends. Thank you Great Physician. We are trusting for a testimony. Spirit of illness, I command you to leave this body in the name of Jesus. Amen
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September 9th, 2015 at 11:05 pm
I truly can relate. I’ve enjoyed your blog tonight (yes I trolled/stalked you for 2 hours) it’s refreshing to know that I am not the only freakishly fucked up parent out there. Thank You for sharing your stories. I added my blog so that you can also relate. I just do it to vent…lol. probably 3 people have ever seen it. I wish you pain free moments, and tons of poop free days.
T.
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September 10th, 2015 at 6:50 am
Yes! I love stalkers! I started this blog, I guess because I’ve just always been writing and I like to tell stories. When I started, I think it was two years ago in August, only my mom read it. And I feel bad for her now because it really wasn’t very good, lol. Pain and poop free times for you too, friend.
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