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.

Teresa, Volunteer Mentor | @hopeful33250 | Feb 3, 2021

Hi @becsbuddy,

What a great discussion! Yes, I'm a Spoonie as well. Here are some of my tried and true strategies for maintaining my energy:

When I exercise, I pick a low impact exercise and I don't try to "marathon it." In other words, I don't try to see how long I can go. I do maybe 15 to 20 minutes on an exercise bike or treadmill. Then I rest, (I actually put my feet up for another 20 minutes until I feel more rested).

I don't do aerobic exercise every day but generally every other day.

I will alternate exercise. For example, one day I may find a YouTube video of seated upper-body exercise and the next day I may go to the Y and walk on a treadmill or use an exercise bike. I generally don't do two types of exercise in one day.

I attempt to keep hydrated. Often when I'm really feeling fatigued, a cold glass of water will renew my energy.

Some days, if I wake up feeling very tired or in pain, I may just make that a day of rest. Put my feet up, read a good book, watch TV or movies and just relax. The next day is usually better.

Well, these are some of Spoon strategies. Anyone else who would like to share their strategies?

Ginger, Volunteer Mentor | @gingerw | Feb 3, 2021

@becsbuddy In 1988 I was diagnosed with Systemic Lupus, and became acquainted with the Spoon Theory. Continuing to work full-time until retirement on 2015, when other medical issues forced that decision, the main focus of my energy was to get through each workday. Eventually the evenings and weekends went from additional activities, to getting home and resting up for the next day. Somewhere in that time, I had a heart-to-heart talk with myself, and came up with the following:
1. There are the "got-to", the "want-to", and the "should" lists.
2. While I endeavor to keep up with the got-to list, I learned to forgive myself if the best laid plans go astray some days. This was a big one to get used to!
3. If friends, family and acquaintances don't want to understand there are times you must delay or cancel plans, you don't need them in your life.
4. When out and about, if the need to take a rest happens, do it. A short recharge time can go a long way to helping me manage the rest of the day.
5. Don't overdo even if you feel the energy is high. Pace yourself. Energy levels have peaks and valleys.
6. Make each day count, even if it is a small thing.
Gingert

nana75165 | @nana75165 | Feb 3, 2021

Wow, is this discussion hitting home! I’m still in the early stages of figuring out what is wrong, even though I should be further along. I travel to Mayo in March and praying to gain some knowledge of what is causing my extreme fatigue, cognitive issues, and pain. I thinking knowing some of the “why’s” might help me get in a groove of a “new normal”. Over the past two years, my primary care has referred me to a neurologist, rheumatologist , and endocrinologist in search of answers. Tests galore and we have some possible small pieces of the puzzle, but mostly I’ve been going around in circles between the three specialists. I love the idea of the Spoon Theory! At this point, it’s just hard to know what my limits are since I really don’t know what’s wrong. I’m doing a lot of journaling to see if I can track triggers, but so far, there is no rhyme or reason. I’m looking forward to the trip to Rochester (can’t even imagine that level of medical care). As I’m sure other’s have faced, there is that little bit of fear that we still won’t have any answers.

joybringer1 | @joybringer1 | Feb 3, 2021

nana75165, it sounds as if you have been on the medical merry-go-round. I have been there and jumped off many times. I wish you all the best at Mayo. Perhaps there will be a wise doctor there who can help you. Having that date in March must surely mean you have some hope. With all good wishes, @joybringer1

Ginger, Volunteer Mentor | @gingerw | Feb 3, 2021

In reply to @nana75165 "Wow, is this discussion hitting home! I’m still in the early stages of figuring out what..." + (show)

@nana75165 Welcome to Mayo Clinic Connect! I am glad to hear you are looking after your own health, as confusing as it may seem right now. Thankfully, your primary care dr has sent you on to specialists in an effort to figure your case out! It's frustrating, isn't it, when the answers are not clear cut? I have found that while lab tests and all show clear values, putting them all together and coming up with a diagnosis to work with can be a while coming.

The idea of journaling is useful not only in tracking your symptoms, but also to give you an outlet for your thoughts and worries. You may be interested in this discussion thread: https://connect.mayoclinic.org/discussion/journaling-the-write-stuff-for-you/
Being able to explain your feelings and how your issues affect daily living, can certainly be helpful for your medical team. Watching any patterns that emerge may assist in figuring things out [time of day, foods eaten, activities, etc].

I hope you will keep posting here, and let us know how we may assist you in this journey? And, I will be interested to hear your opinion of the Mayo Clinic, and what they find out with you!
Ginger

pinchas | @pinchas | Feb 3, 2021

In reply to @nana75165 "Wow, is this discussion hitting home! I’m still in the early stages of figuring out what..." + (show)

sounds like my story

Becky, Volunteer Mentor | @becsbuddy | Feb 4, 2021

In reply to @nana75165 "Wow, is this discussion hitting home! I’m still in the early stages of figuring out what..." + (show)

@nana75165 I’m glad you found this discussion! I felt just like you 4years ago. So many vague symptoms and the doctors saying it was all in my head. Doctors at the community hospital just had no clue. After an MRI, we went to the university hospital and a doctor knew what I had! Yay! Just keep on journaling ! Remember, try not to be afraid when you go to Mayo—they want to help. Be sure you keep in touch with us!

Becky, Volunteer Mentor | @becsbuddy | Feb 6, 2021

Well it’s not even 12 noon and I think I ran out of spoons! I took my dog to the vet and took a long walk while I waited and then concentrating on everything the vet said. The vet loves to talk, but I have a hard time listening. Oh well, now to take a break. Do you do anything special when you have to concentrate?

Ginger, Volunteer Mentor | @gingerw | Feb 6, 2021

In reply to @becsbuddy "Well it’s not even 12 noon and I think I ran out of spoons! I took..." + (show)

@becsbuddy Ask them to repeat, or write it down. Or ask to go over it again when you are feeling more energy. I recently had a similar experience as you did, and after about 15 minutes I was getting more and more stressed and anxious. I insisted the gentleman stop throwing information at me; I needed to leave before I went off the rails!

This morning I had to clean up some broken glass in the street around the corner from us. When i was done, my husband asked for assistance moving some firewood. If I would have known, I probably would have cut short that sweeping! An apple with a bit of pepper jack cheese perked me up.
Ginger