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

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 😔

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.

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)

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.

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.

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

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.

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

@becsbuddy Even though I have progressed a lot from my early days on Mayo Connect, I still practice a modified version of the Spoon Theory - and at home, it is reinforced with every visit to my PT. But someone was asking in another discussion about dealing with fatigue, and I referred her here.

Then I remembered my "down South" PT scolding me on Monday. I am still rehabbing from rotator cuff surgery four months ago, and decided last week that I should push myself as the Energizer Bunny, athletic, 30-something DPT here encouraged. Monday, when I had a check-in appointment with his (far more sensible) PT, she had to spend 30 minutes working out the muscle strain I had caused by overdoing it. She scolded me, reduced the amount of reps for the next week, and gently reminded me recovery is for me, it's not a race. So today, after 2 days rest, I will resume, using her schedule. And maybe I won't need a nap when I finish!

Another Spoonie Theory that I have practiced and modified along the way it to figure out what my day and week hold before committing to activities. And putting in intentional rest days or half-days every week depending on how I am doing.

For example, I no longer run the kitchen for events in our community, which requires up to 3 days of work - instead I volunteer for specific smaller parts, like doing the posters or decorations or setting the tables.

And I try to ALWAYS quit a task (and make my husband do the same) before I am exhausted - so it might take 3 days to finish instead of just one. Between 4/5 pm we always stop for the day to relax - earlier if we have an evening activity, then we will rest a bit.

To account for true no energy days, or for busy ones, our fridge/freezer is filled with easy meals - like leftover chili or soup, makings for eggs and toast, frozen veggies, etc. Either one of us can pull something out and have it ready with minimal prep. There are even frozen meals for one that are pretty healthy and cost far less than Door Dash or fast food.

What Spoonie tricks do you use to conserve energy?

@sueinmn I never know what my energy level might be like on a given day. Some days, I know ahead of time that the energy drain might be a lot. For example, yesterday was over 4 hours driving north and back for a medical appt. Plus a meeting last night. Slept in the recliner last night due to exhaustion and a headache. Sometimes I can bank energy, but not often.

Over the course of time I have learned that just because something is on my daily list of tasks, doesn't mean it all has to get done that day. Do what is required, and maybe a partial of some others. Be gentle on myself. Lower my previous "gotta do" expectations. Yeah, easy to say, difficult to do.
Ginger