A Little Reminder… Maybe It Is Time To Read “The Spoon Theory” Again?

 

If you follow me on Twitter you know that I’ve been dealing with issues at work: Lack of hours; going in to work and then being sent home before even clocking in. This has been going on for two weeks. I had a mental breakdown couple of nights ago because I have not accomplished anything in what I had deemed as my new found extra time. Why wasn’t I getting anything done? I wasn’t at work so I should be getting something accomplished at home, right? Yet I was also coming home and vegging/napping for a few hours. Is this how it was going to be in January when I stopped working? Would I ever get anything done? Why am I so useless?

Every spoonie has that moment when they belittle themselves or think they should be getting more done. Even if we’ve read “The Spoon Theory” and know we shouldn’t be so hard on ourselves, we are. My lovely husband held me during my little pity party and reminded me why I can’t (shouldn’t?) be so hard on myself.

He said, “This is no indicator of what life will be like in January. You’re using spoons every day! You get up, get dressed, catch the bus, walk from the bus stop to work, sit for an hour waiting for your shift to start, then you have to catch the bus home when you’re told you’re not needed and sent home, and then you still have to walk home. You’ve prepared yourself emotionally and mentally for work. Geared yourself up. By the time you get back home you’ve wasted 3-4 hours, not to mention the amount of spoons spent emotionally, mentally, and physically. You need to reset your brain. I understand. Stop being hard on yourself!”

I think we all need those reminders. Even if we know we shouldn’t be so hard on ourselves we are. It’s human nature. Society plays a large role in it also. So this is my reminder to all spoonies. Don’t forget that all tasks, no matter how insignificant, do take spoons. We need to reset ourselves when plans change. It’s okay.

 

Article written by staff writer, Suzanne Moore

Suzanne is a wife, mother, employee, patient, and EDS (Ehlers Danlos Syndrome) advocate. Suzanne has been married for 17 years, has two daughters, and 4 fur-babies. She was diagnosed with EDS, in 2008, after a life time of pain and now has severe Osteoarthritis in most joints. Also recently diagnosed with Sjogren’s Syndrome. She can be found on Twitter (@MeriLizzie) or her blog www.MeriLizzie.com

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  • walker

    Wow. If my doctor told me that, I would look for another one. In my case (fibro) moving is important, but walking sucks. I could never do a job that put me on my feet, gentle hugs and best wishes.

  • Bzjohn

    I have anquestion and do not mean to be nosy have you lived anywhere in the southwest areas around Nevada… there was alot of chemical testing in above ground blasts and they are just now putting exposure and diseases connections …. also MS has very similiar signs you’ve described.  I have fibro and cfs and they had to eliminate MS and epstein barre as possibilities. hang in thinking of you…

  • Teri

    hey i have beeen kicking myself for three days about the load of laundry waiting…let it wait/  there will be time when your stronger said my understanding mate.. Found this info thought i’d pass it on  http://www.health.com/health/condition-article/0,,20347249_2,00.html

    article about vitamin D and fibro… very interesting cheers

  • Meadowmonioz

    Thank you so much! I needed to read this more than you can imagine today. I am in the midst of a bashing episode propelled by fear I will fail all my college classes owe back my financial aid after just starting back up again. Because I’ve missed so much school I AM failing and behind. Once I stopped to breathe a moment I realize I can go ask for help and if I do fail I didn’t fail because I really put my best out there and that was a lot more than sitting at home wishing I would try. Thank you again…wish me luck getting to that bus stop today…I need it!!!

  • Karen

    I love this website. I’ve spoke with others many times about the invisibility of Certain illnesses I deal with.
    I have an atty appealing my disability application that was denied through my work disability company. I need to apply for federal disability. Has anyone a good reference? I see an ad on this sit for myerdisability.com. Anyone use them, comments? I have to apply in conjunction withnthe work disability.
    Thanks.
    This has been a difficult week. No spoons right now.

  • Ginger

    I just read the spoon theory for the first time. That was the best description I’d ever read.

    Even DOCTORS don’t get it. Doctors who deal with spoonies every day of their life. I told my rheumy that there were days when I got off work and drove home… and then I couldn’t get out of my car. My legs just wouldn’t do any more (I have a job on my feet all day). He says “Well maybe when you get home you should go for a walk” Uh what? I said again slower this time “I can not get up out of my car some days. I sit there for sometimes a half hour like an idiot” “Walk for fun. Not job related, but for fun. Exercise and fresh air may help you feel better” WHAT!?!!?!?!?!?!?!!!????

    Goodness gracious.

  • baylor1

    Thank you all for your comments – it helps to hear from others the same thoughts I am thinking and the same reactions (both spoken and unspoken) from others.

    My partner is the Lord. I am reading Jesus Calling right now and finding it so wonderful in refocusing my attention (don’t we all have to do that every few seconds anyway?) on Him. He reminds me that He is the only One I have to please and that He will tell me what to do and not do, so that in the doing He will be my Strength (all the spoons I need for the activity). That doesn’t means I don’t end up in negative spoon territory. Those of you who have Lupus understand the thing where your body doesn’t say “too much” until WAAAAAAAY after the fact, so by the time you are down, you are really, really down! But He is there for that, too. In the waiting, there is peace. My prayer is that all of you will know Him and cling to Him and find Joy in Him!

  • RabbitHill

    I try not to beat myself up if I have days (or weeks) where I don’t get much (or anything) done, but it is hard when you have a spouse (soon to be ex) who has no comprehension of what it is like. Or a sister who will push herself till she drops, and then complain that she is being a wimp. When my husband booted me out, I had to move in with my sister, and she made a most unfortunate comment where she called me a “burden.” Not exactly something you want to hear when you are not doing well to begin with as you then want to try and prove that you are not. I have been doing worse since living with her as I am trying to do too much and it has been super hot this summer (90s and above).

    Thanks for your post as it is nice to read about others with similar problems.

  • MiniMorg

    and i meant that my partner is guilty of saying the “i get tired too” one. Sorry. bad brain fog. GRRRRR!!! i’m done now.

  • MiniMorg

    a spoonie not a spoon. oops!

  • MiniMorg

    This post has made me feel much better as I am often beating myself up over what I have not done some days. You sound pretty darn amazing to me as I have been a spoon for years. I tip my hat to your husband–the world needs more people like that.
    I also have an amazing understanding partner but there are a lot of people who still say;
    “But all you’ve done is….”
    “It wudn’t kill ya to walk that short distance”
    “Have you ever thought that I get tired too?”
    “You would probably overcome it if only you were working toward something such as moving out”
    Even my partner is guilty of saying the last one but is so generally understanding and puts up with so much of my physical and emotional baggage it doesn’t really bother me that much when he does as he takes great care of me and I don’t expect it at all.
    Thankyou for your post. 🙂

  • Butterfly

    Several of you have posted with lists of your confusing symptoms. I GET IT… i have just recently been diagnosed with LYME. Find a Naturapathic Doc who is LYME LITERATE and does muscle testing or a cell frequency testing machine and get tested. Generic MD testing for Lyme does not work and is NOT a true sign whether you have Lyme. It is the highest mis-diagnosed chronic illness and when it is deep in your body it can hide in your organs and tissues…… and the list of things the docs CALL all the symptoms just continues to grow………. the swelling, tingling, numbness, heart problems, pain, joint issues, stiff neck, adrenal fatigue, head aches, food sensitivities, bladder issues, cancers, rashes, chronic candida, auto immune disorders, vision issues, MS, ALS, fibromyalgia… all these and more can be the random things that we with Lymes live with and some are worse then others at different points. It feels like you are crazy and many doc will tell you they “dont know what to do and that maybe you need anti-depressants”….!!!! NO, we need ANSWERS! Every person deals differently with Lyme and we need to be sensitive to support each other unique challenges… im so sorry for what you are all going thru.

    I have HOPE now, because i know there is a bacteria in my body – a spirachette – that is in the shape of a drill, literally drilling thru my organs and tissues. MD and insurance companies want to tell you you have all these problems they can throw drugs at… you could actually have a bacteria problem. I will be treating with a Beam Ray Frequency Machine. Several people i know who have lymes are getting Great results. It attacks just the individual cells you are targeting, it takes years, but results can be stunning as you heal! a year ago my friend went from near death, to camping with her family, riding horses, and being a mother again.

    Sorry if my spelling is bad.. my mind does not work very well right now. I cant start treatments until im done nursing my baby… we have to be so strong. THERE IS HOPE… KEEP LOOKING>

  • Chin up chick – you are awesome to be able to pull off everything you pull of on a daily basis. Your husband is right – you are a brave, spectacular woman!

  • Kathy Duncan

    All of these posts state our problems so well. I have a great support system of large family & lots of friends plus a husband who takes good care of me except for one thing. He hates taking meds & thinks I should take every thing as needed instead of as prescribed by the doctor. He doesn’t understand that once a symptom occurs it take time, effort & causes severe pain to get it back under control. Does anyone else have this problem? How did you convince them that only me & sometimes the doctor can decide what & how to take my meds? Some of them are as needed but some are ti prevent problems before they start. And I’m the only one who knows how I feel. I’m up when I can be & then he’s telling me to lay down I need to rest

    Thanks for letting me vent a little.
    God bless

  • Dawn

    Thank you for your post. I feel guilty everytime I can’t get stuff done as I use to in my healthy body. I have yet to learn how to adapt to a new way of life after a severe ms attack which took me out of the workforce. I guess it takes time to adapt to change.

  • I really needed to read that, thank you so much for this post. 🙂

  • Bryna Hill

    This is a response to Mimi Noland, August 19, 2011. I am almost 40 years old and I was finally diagnosed with Multiple Sclerosis this year (brain and cervical MRI’s) and a spinal tap confirmed the diagnosis. I also have fibromyalgia which I have dealt with for several years now…chronic pain, fatigue, depression, etc. I read your post and we have alot of the same symptoms. A blood test for epstein barr would confirm fibromyalgia and is a common factor in MS as well. You can also look up fibro online and see if you have sensitivity where the certain pressure points are. I hope you find a diagnosis soon. I found mine, but it doesn’t make it any better. MS SUCKS!
    Peace, Love, and Happiness to all! Live the good days to the fullest…I know you’re not supposed to over do it; however, I do. I love my good days, I just wish I had more of them!

  • Jaye

    I couldn’t believe it, that you we’re able to put it into words. I have been sick for over 6 years. NO answers, lots of tests, and just tell everyone that I am fine. I strive to get well even if never diagnosed. Right now, I have just stopped sharing any information with anyone. Without a diagnosis, I don’t even think my husband truely understands. Every answer I have had is a symptom diagnosis or write off diagnosis. Through the process of all the meds and tests, I have lost my gallbladder, gained weight, and dealt with all the side effects. When I came back to work after the gallbladder surgery, I was told my job was eliminated. Then we moved back to Pittsburgh, hoping to get answers at the Cleveland Clinic. Since then I have been hospitalized and had yet another surgery. With no set diagnosis, I am always told I should be thankfull when the tests come back negative. I have found a great neuropsychiatrist who has been able to help me and am trying accupuncture. I hope this all just at least improves things. I am starting up a blog, with art to show how my pain feels, and what I am doing, but even there I am tempted to keep my name secret. Worried that it will effect me getting my business up and going or getting hired for any work. I have joined TNT running team. Telling myself that at least I am able to fight against some disease for someone else. I constantly remind myself that many have it worse then me and now can say have less spoons. Not knowing makes it hard to know what will effect me other than trying to remember when I have had bad bouts and making note of it for the future. I’ve fundraised for others, watched as others raise money or help friends diagnosed and needing help. I never share the debt that my husband and I are in from medical bills. Which is all just more added on, having to fight between insurance and medical companies, being incorrectly billed many times, and never qualifying for assistance because they always simply look at our gross amount income, without taking into effect medications, copays, owed bills, etc.
    I guess the whole point of this was to thank you. Thank you, for letting me share, and creating a place for others. Thank you for finding a way to explain it to make people understand.
    Thank you for making me cry and release some of the pain today! Thank you!

  • Susan Gerlach

    I needed this! I’m currently in pain and seriously itchy, having pushed myself much too hard and caused a flare of my PAN. I feel much better – rather than fussing about the things I haven’t done, I’m concentrating on the things I can do.

  • Melody Ream

    Glad to know I’m not the only one who tries to complete certain daily tasks and wind up getting absolutely nothing done. I seem to do this 6 out of 7 days of the week. And I wonder why I’m depressed and anxious. Sounds like bedtime.

  • Erin Herold

    Mimi Noland – you sound like me. Just like me. Have you been evaluated for Ehlers-Danlos Syndrome?

    The Spoon Theory has gotten me by on many days when it hurts to be awake, but you can’t sleep. Hurts to sit, but you can’t stand. Want to do something – anything – but you can’t move without agony, but you get stiff from not moving.

    It makes me so thrilled to know that I am not alone, but so sad to know that others hurt like I do. At least through @bydls’s #SpoonTheory, I can explain it better.

    And Mimi – feel free to contact me (@HarkHerold) on Twitter if you want to talk abt EDS, or visit the EDS Nat’l Fdn for diagnosis info at http://www.ednf.org

  • Vickie Foster

    Your husband is a wise man! We do need to be reminded it’s O.K. to rest and “Do Nothing’, sometimes getting up is “Something”…Great post, Vickie

  • WONDERFUL article and reminder!!

  • Purr thank you again for this article. I just found out that all the phone tag and bulling through Catch-22s paid off in a big way. In Home Support Service flagged my case Urgent and I’m getting a social worker calling on Monday to set a time to come over. I’m also going to the Drop In Clinic on Monday to get the doctor note for IHSS.

    I pestered them enough that they went ahead and gave me MediCal completely, it’s active now. I don’t have to wait for my prescriptions. I can have the drop in clinic doctor phone them to Walgreens and then I’ve got a whole month to find a real primary care doctor for permanent. Plus a case manager to help me do it and a support person to come over and help me bathe before my street art screening.

    I wanted to dress in my best shirt and new Levi’s for that screening, and have a good presentation with good artwork as examples. Tonight I’m going through what I already have done.

    Then I’m going to grind some sumi-e ink from the ink stick and prepare for it as a meditation. I’ll do some landmark San Francisco subjects in Asian style – there are just as many Asian tourists here as Western ones. The up side is that goes really fast. Either it comes out well or it’s junk. It’s like snapping photos – toss the ugly ones and mat the good ones.

    As the most serene art medium I could do and one of the fastest, that’ll get me past the necessary number of pieces enough that I can relax and play with other mediums without worrying about whether each one is salable and good.

    I wanted to share that because I vented on my earlier comment. Sometimes going way beyond it all into spoons deficit and doing things even a normal person might get stressed by succeeds. I got one of those moments today when IHSS called to tell me the worst is over.

    I’ll be very glad to delegate all future phone tag to the case manager!

  • Mimi Noland

    I wish I knew what was wrong with me. But reading this and your subsequent posts makes me know I’m not alone, and that feeling like I’m wasting my days and not understanding why I can’t seem to get anything done or get anywhere, even if I want to…is not unusual for someone dealing with chronic illness. I think pain messes with our brains, after a time. I know there is a pattern of illness of some kind going on, but I remain without a firm diagnosis. That gets scarey because the more time goes by..the less I tend to go to the doc for anything…I’ve gotten complacent, over the years. I’ve lost faith that anyone will ever put the pieces together. And the fog that’s descended over my thinking..that started years ago with the awareness that I couldn’t concentrate well enough to read a book, has gotten so bad that it is now affecting my daily life.I can’t seem to move. I feel like I’m not in my body, or that I’m just waiting..doing my time…because there is nothing left to do but that. I have never heard of the ‘spoon theory’ before. But I so understand how fatigued I get just from getting ready to go somewhere. Even taking a shower has become a planned event, due to pain and fatigue. What happened to the person I used to be? I’ve lost her.She got buried in all the medical charts and go-nowhere tests that show that my joints are a mess; with shredded cartilage, tendon and ligaments half-torn through and pulled partially off of muscle and bone,My Sed. rate is unusually high,(inflammation), sometimes off the charts. I have flushing and numbness on the right side of my face that comes out of nowhere, and lasts anywhere from forty minutes to two hours, I’ve had two life-threatening nose bleeds seven months apart, both on the right side,with no cause determined. (That was four years ago.)I have swelling and edema in my lower legs and feet as well as in my hands.Sixteen years ago Doctors removed an unusual amount of scar tissue in my abdominal cavity…adhering my gut to my abdominal wall. Three years later, my gall bladder was removed due to being cocooned by scar tissue and not functioning. All the scar tissue had grown back in my abdominal area and this time was removed with cauterization.No cause was ever determined for it being there. I have pain in my back, legs, knees, hips, feet, less often in my hands, and all this over the past five to ten years, worsening in the last five, and now in the past few months, what feels like neurological involvement…numbness and sparkling pain in both hands, my left leg,and the front of my neck, as well as a feeling of disengagement between my brain and my legs…I have to consciously think ‘step, step, step…but my feet don’t always seem to hear me clearly…it’s like a slight delay or inability to do what my brain used to handle without any conscious effort on my part.If I have to walk any distance, I have to use two full arm crutches. I can’t sleep. I can’t think. I can’t function. I don’t often speak of these symptoms to my internist anymore, unless he asks. I’m just tired of it, and of talking about it.I don’t know if symptoms are related or not. Does any of this sound at all familiar to anyone? In any case, thanks for this post, and for letting me know there are others who feel the same as I do, diagnosed or not.

  • Marilyn Winspear

    Not that it is okay to be ill, but. . .it is okay to rest because I am ill. It is okay to read when I can concentrate. It is okay to watch a movie (not something I do very often, but it was pointed out to me by another that it is a good hobby). It is okay to sit in the recliner when I just do not feel good that day. It is okay to not force myself to do and do and do. It is okay to just be. I was lamenting to my therapist about not being able to do so much. He told me Wednesday, that we are human beings, not human doings. I really liked that. Thanks, again.

  • Marilyn Winspear

    Oh my goodness, did I ever need your message reminder. I have been a workaholic all my life and slip back into the mode and push and push and end up being so tired by noon that I collapse in tears from sheer exhaustion. And I have only loaded the dishwasher, done a little paperwork, fed the dog, and been on the computer. Like so many others, most days I don’t even get that done. And then I criticize, criticize, criticize myself for not getting done what I believe I SHOULD. I do not like that word and so wish I could throw it out permanently — I always plan to not use shoulds, but there they are creeping back into my psyche and vocabulary. Thanks for reminding me that it really is okay be be as ill as I am.

  • Sherrie Nelson

    Oh – – wish I could send you all many many many spoons – – but my spoons get used up and then some (looking fondly at the forks). I get up before my DH leaves for work – sometimes he finds me where he left me, in my recliner, but most days I have moved from there! He looks at my eyes, and knows what kind of day it’s gonna be for me.

    He wanted to know why I started my Christmas cards this early. He asks me why I start Halloween cards this early – cause if I don’t I won’t get them done – and even starting this early – I will forget someone or something, I am sure! I write everything down – then sometimes I can’t find THAT!

    I shared with DH where I am painwise – I don’t think he realized how bad it is and has been, because when I related my current pain to my gall bladder attacks – his eyes just shot open – – 8-9 on a regular day – WITH MEDS! I know, I need more, but I have conservative doctors! RA, Osteo, Fibro, RLS, ruptured disc in my neck, three ruptures in my back, oh, and post polio syndrome is just the beginning –

    Wishing you all a great day and weekend – – sending Costco size bags of spoons too all!

  • Kim

    Suzanne,

    You don’t know how much I needed to read this right now. I’ve been in such a “funk” mentally and emotionally the past week. I needed to be reminded that I am not superwoman, and no matter how great I look…. I’m not well. I too have a wonderful husband of 29 years that I believe is the ONLY person in my life that actually knows how I feel. I’m so grateful for him and for you and this website.

    Let’s all hang in there and take care of ourselves and each other, we’re worth it!

  • Antje

    Maybe it’s not such a bad thing to tally up our “accomplishments” at the end of the day, as long as we do not measure our worth by how much or how little we got done.
    Sometimes my ADDING MACHINE TAPE is rather short at the end of the day and other times the length of the strip of tape
    pouring out of the machine amazes me.
    The important thing for me is that I am still wanting to “do chores and that I still want to “handle matters” and solve day to day problems.
    I find that my ghost is still willing, but the flesh is often weak.
    Some days I am a feather weight, some days I am a light weight and some days I am a middle weight, but through the grace of God I am still standing up to the disease with my boxing gloves on and my battle cry is… “I have the disease, but the disease does not have me”.

  • Karen

    I was so glad to hear from others that I am not crazy. I was forced out of my job and had to leave on disability. That was Jan 2011, and I have not done very much in the last 6 months. I too only seem to get one or two things done each day and basically veg out.

  • I am stuck at home, off work for an unknown length of time during this flare, unable to drive…you know the drill. Feeling useless as well. It was a huge accomplishment yesterday that I could stand up long enough to pack my kids’ lunches for school. I try to just “let” myself be sick, and give myself a pat on the back when I can do something minor. It’s a little twisted, but here I am 🙂

  • Joan

    I am entering my 27th year with MS & I usually wake up with my husband @ 6:30 to have a cup of coffee. Believe me when I tell you that Mondays are the only days that a chore is guaranteed to get done…Laundry. Only because 1)I love the smell of it, 2)I have rested on Sunday & 3) My Beloved does not care if I look the same when he gets home as when he left. (giggle-giggle) Most days it takes all my spoons just to get my brain to help me get presentable and map out one other task for the day. My help each day has come from my faith because it allows me to see the glass half full.

    Be Blessed Fellow Spoonies! : }

  • Nona

    I can relate…just to get up, get in the shower, apply make-up and fix my hair takes at least 3 spoons from my supply. No one knows how hard “simple” everyday tasks are, until you are hit with a chronic illness. We Spoonies are hard on ourselves. The endless guilt for not getting “enough” done. The “I should have been able to (fill in the blank).” My brain still functions like the old me… the one who was healthy, athletic, and pain free. My body, the me in real time, sets my limits for me, puts me in excruciating pain if I don’t listen. It’s a daily internal battle I fight, with myself.

  • Natty

    I have always thought of spoons just in a physical way.
    Your husband is right though, being miserable, or gearing myself up for something drains me completely.
    Going to take the spoon theory to my doctor today and try to explain.
    Your husband sounds wonderful, you are lucky to have someone who understands. Tell him thank you for saying that, and thank you for telling us, it’s made me feel much better this morning.

  • Yeah, I know that feeling. Today. I got up at 8:30am. I made one phone call to leave a message for In Home Support Services to call me at 2pm. It’s now 8:30 and that’s all I did all day. That and get out my drawing board, take out a piece of paper and clip it to it, choose 14 pastels at random for a limited palette challenge.

    I had to pick them out with my eyes shut and sat on the floor to do it with my pastels box open. I folded up the pastels box and put it away. I scanned the 14 colors to post my colors on the challenge thread.

    That’s it. For the whole day. In 12 hours I made a phone call and took out my art supplies.

    I know that I’ll always have some days like this. It’s just that every time I do, it still drives me nuts and I feel so frustrated. Thank you for posting and reminding me why it happens.

    Today I was in bad shape because yesterday I dealt with a full day of phone tag dealing with social services and the day before I did a full day of phone tag dealing with social services after the move. They treat me more respectfully in San Francisco but it’s still the same phone tag and the same catch-22 stuff until it gets sorted out, which takes bulling ahead and not taking No for an answer.

    So that’s why I’m sick today. I’m emotionally exhausted from yesterday and flaring in the aftershock of all the stress.