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How do you plan your day and conserve energy? Are you a Spoonie?

Posted by Becky, Volunteer Mentor @becsbuddy, Feb 2, 2021

Are you like me, and run out of energy after doing only a few things? You shower and are then worn out and have to rest? Or maybe you walk the dog and it’s just too much! And you find yourself turning down invitation to lunch (pre-COVID-19) because of no energy. I do. I hate having to say no to friends, going home early, or taking shorter walks. I feel like I lost so much and myself!
Then I heard about The Spoon Theory, developed by Christine Miserandino. It’s a way of describing, planning, and conserving energy units that you use during the day. On her web page, Christine how she explained her illness (lupus, an autoimmune disease) and energy levels to a friend. You are able to explain to others the details of your life as someone with an invisible disease or chronic illness.
For example, I start my day with a list of things I need to do (shower, make the bed, do some laundry) and then I add my list of things I want to do
(go for a nice walk, sew, bake something). When I put the lists together, I realize that I won’t have enough spoons (units of energy) to get through the day. So, I’ve learned , using The Spoon Theory, to divide up the have to’s and the want to’s and add in some rest periods. I probably won’t get everything done—there’s always tomorrow—but I also won’t get exhausted, achey, and cranky half way through the day! The Spoon Theory has made so much sense to me!
Have you thought up a way to use and conserve your energy throughout the day? 

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/https://www.brainsupportnetwork.org/explaining-fatigue-the-spoon-theory/

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

dreaminasecond | @dreaminasecond | May 26 6:58am

Hi, absolutely! Not exactly a spoonie, but right now, today my body will give me 3-4 hours of work a day and I am spent. But, yes I am definitely pacing. I have had long Covid a few times now and unfortunately it just has gotten worse. I was diagnosed last week with my 5th autoimmune disorder/disease. I have to pace and not push myself to the edge, but instead I stop short of exhaustion and take a nap. I'm tired of all of this. I really am. It's not just my body that can wear me out, using my brain for complicated processes leads me to exhaustion as well. About 4 hours and my brain just goes offline and doesn't return without rest. Yeah, I attended a class on living with long Covid, but never got the visual of spoons. My energy is such, that I am on or off. I wish I had like 4 spoons a day and could stretch out my strength and endurance throughout the day but it doesn't work for me that way. I'm on or off. But, that's ok, because I know how to manage my symptoms which is the point, yeah? Journaling helped me find the patterns I needed to be more efficient with my illness and establish boundaries with those around me who were used to me doing more. I know they miss my energy, but what's the point in running myself into the ground and then needing help and care from those around me? I prefer to protect my energy, be responsible to myself and the best I can be to others from there. It's such a an adjustment and emotionally uncomfortable. I'm sorry 😔

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1 reply
cocokoohlah24 | @cocokoohlah24 | May 27 4:31pm

Yes! I have to be careful and do things in stages. Even showering. One shower wash hair, body. Next shower shave arms, next shower shave legs. I bought an electric razor for the legs so that's one less thing to do in shower.
Meals requiring prep - do a thing, rest - do a thing - rest.
Memorial day weekend I still did too much despite getting help from my partner and taking breaks. I slept most of today. I too feel like I lost a lot. Somedays I'm more accepting of that than other days.

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purehope2022 | @purehope2022 | May 27 5:23pm

It's difficult for my mind to be healthy and my body to be so very sick. I don't know how many dozens of times I have to over-commit (and then need to cancel) to learn. I'm good for planning to have guests over... clean 4 days before ... shop and set table 3 days before ... finish cleaning and prep food 2 days before ... rest and small details one day before... cook and get myself ready day of. I have to do this. I suppose the last part is plan nothing for the day after as I will be useless except to rest. It all does suck--but I don't have the energy for anger. I use everything I have to live into this new normal. It does take planning. Hope good things for you. < 3
PS I have Granulomatosis with Polyangiitis (GPA)

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1 reply
dreaminasecond | @dreaminasecond | May 27 11:34pm
In reply to @purehope2022 "It's difficult for my mind to be healthy and my body to be so very sick...." + (show)
@purehope2022

It's difficult for my mind to be healthy and my body to be so very sick. I don't know how many dozens of times I have to over-commit (and then need to cancel) to learn. I'm good for planning to have guests over... clean 4 days before ... shop and set table 3 days before ... finish cleaning and prep food 2 days before ... rest and small details one day before... cook and get myself ready day of. I have to do this. I suppose the last part is plan nothing for the day after as I will be useless except to rest. It all does suck--but I don't have the energy for anger. I use everything I have to live into this new normal. It does take planning. Hope good things for you. < 3
PS I have Granulomatosis with Polyangiitis (GPA)

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I love that! " I don't have the energy for anger". I totally understand that! I don't have the same fear of death after feeling like I was living with an unknown gun to my head. So funny now, when I reflect. And how grateful I feel every day to be on this side of the earth.

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slkanowitz | @slkanowitz | May 28 7:42am

I live like you all have described, with 3-4 hours a day of being productive, and limited at that. I have found alternating easy and difficult tasks helpful. Also doing many tasks sitting or even lying down, like phone calls. I am pretty worthless in the afternoon so plan activities and work for morning. I have lowered my standards and eliminated unnecessary things like making the bed since I get back in it for afternoon rest. I cook more simply, shower less often, only have guests for times drinks and simple snacks, not meals, can be served. and pace throughout the day with rest in between tasks. I try to include some want to’s daily for my mental health and take preventative rest before any big social event. The spoon theory is great, and I have shared that many times. I try to focus on what I can do, not what I can’t do. We have to keep living with a smile and experiencing some joy.

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mclelland1958 | @mclelland1958 | Jul 31 8:10am
In reply to @momdukes "Please if you don’t remember anything else, remember God! This and only this will keep you..." + (show)
@momdukes

Please if you don’t remember anything else, remember God! This and only this will keep you with your peace. This Autoimmune Nightmare is real. Many many years of suffering as I have, I’m certain has been cause for my severe depression. Because in most cases, you don’t “look sick”, it’s quickly determined that it must be in your head. That some “childhood trauma” conclusively causes the horrible pain in your body. When I tell you that I’ve heard it all. I have experienced all the humiliation felt in these comments and desperation stories. Does it help talking about it? Trying to figure that one out because it’s pretty taxing on me to sit and write this. There is too much to tell. I pray for you, because after 22 years, additional “stuff” has found its way to my body and is still some, definitively undiagnosed. Osteoarthritis; Fibromyalgia; Sarcoidosis; Systemic Sclerosis and now, through my own research and pure hellish suffering, I believe Dercums, I’m at my wits end. If I make it I will turn 68 on Nov 11th and feel like it’s gonna be my 88th No desire, no energy, little hope. Keep getting up is my advice, if any. Keep getting up. It’s been 22 years of nothing but doctors, specialists and despair. I’m so sorry for you and I pray that yours will not end here, Blessings.

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Can you explain “keep getting up? I am in a crash, and I am trying to learn how to recover.

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friedrich | @friedrich | Oct 4 8:38pm

Thank you for your description of Spoon Theory and how it applies to LC fatigue.

There is an article about it on Wikipedia.

Perhaps this Spoon metaphor will be used by coaches for “Pacing” as part of the national clinical trial of Pacing instruction as a treatment for Post-Exertional Malaise (PEM). The trial is called RECOVER-ENERGIZE. There will be 40 study sites.

I posted links to information about the trial in a pair of Comments here this week.

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friedrich | @friedrich | Oct 4 9:32pm
In reply to @dreaminasecond "Hi, absolutely! Not exactly a spoonie, but right now, today my body will give me 3-4..." + (show)
@dreaminasecond

Hi, absolutely! Not exactly a spoonie, but right now, today my body will give me 3-4 hours of work a day and I am spent. But, yes I am definitely pacing. I have had long Covid a few times now and unfortunately it just has gotten worse. I was diagnosed last week with my 5th autoimmune disorder/disease. I have to pace and not push myself to the edge, but instead I stop short of exhaustion and take a nap. I'm tired of all of this. I really am. It's not just my body that can wear me out, using my brain for complicated processes leads me to exhaustion as well. About 4 hours and my brain just goes offline and doesn't return without rest. Yeah, I attended a class on living with long Covid, but never got the visual of spoons. My energy is such, that I am on or off. I wish I had like 4 spoons a day and could stretch out my strength and endurance throughout the day but it doesn't work for me that way. I'm on or off. But, that's ok, because I know how to manage my symptoms which is the point, yeah? Journaling helped me find the patterns I needed to be more efficient with my illness and establish boundaries with those around me who were used to me doing more. I know they miss my energy, but what's the point in running myself into the ground and then needing help and care from those around me? I prefer to protect my energy, be responsible to myself and the best I can be to others from there. It's such a an adjustment and emotionally uncomfortable. I'm sorry 😔

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Thank you for sharing with us your experience with Pacing.
What an eloquent comment!

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