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

I understand! I recently had a revelation about my "spoons" - I can deliberately "save up" a few. We found ourselves in a situation where we had to wait unexpectedly for 5 days in a location while completing a transaction. We had hurried to get there (probably burning more energy that I should have.) We had no option to "go home and come back" - we were at the mercy of the banking systems in 2 countries.
So, we looked at one another and shrugged, decided to make the best of a poor situation. For 1 1/2 days, I was "used up" and rested a great deal.
Then for two days we leisurely played tourists - visiting the local sites and sampling the food and culture.
The last day of waiting, again, I rested/relaxed as much as possible - refused to be stressed out by something out of my control.
When we finally finished our transaction, the staff told us "We cannot believe how patient you all were" - but in reality, it was our deliberate decision not to spend our spoons on ranting and stressing out, but rather to trust that in the end it would all work out.
So, it all worked out, we had a few spoons in reserve for our hurried trip home (it was intended to be more leisurely), and we are still speaking to one another .
What is the point of this story? Instead of stressing out about how many spoons you have, which in itself uses up spoons, accept that some days will be good, you'll match your spoons to your activity, and relax. Accept also that some days will be bad, use the minimum number of spoons, put the rest in the drawer for tomorrow, and relax.

Now, think about your lists. Do you really need long lists of things you "should do"? Or would it be better to get up in the morning, see how you feel, and make a list of 2 or 3 things you can reasonably accomplish today. The last item on the list should be something you really enjoy and that doesn't take much energy - a short walk (even to the end of the block) a bubble bath, call a friend of family member...
Make it achievable - not "do Laundry" but "Wash and dry towels" or "Wipe down counter and appliances" instead of "Clean Kitchen"
Maybe "Spend 15 minutes sorting accumulated paper & throw away/recycle ads, envelopes, and unneeded stuff" is better than "sort and file everything" - especially if it is all piled up. You can even do that sitting on the couch with a coffee table or card table in front of you. Make filing it, or paying bills a separate task on a different day.
Remember - a list is no good if you don't do it - and a long list that depresses you is even worse - it spends your precious spoons on stress.

Have you tried to use a short list "Just for today"?
Sue

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I understand! I recently had a revelation about my "spoons" - I can deliberately "save up" a few. We found ourselves in a situation where we had to wait unexpectedly for 5 days in a location while completing a transaction. We had hurried to get there (probably burning more energy that I should have.) We had no option to "go home and come back" - we were at the mercy of the banking systems in 2 countries.
So, we looked at one another and shrugged, decided to make the best of a poor situation. For 1 1/2 days, I was "used up" and rested a great deal.
Then for two days we leisurely played tourists - visiting the local sites and sampling the food and culture.
The last day of waiting, again, I rested/relaxed as much as possible - refused to be stressed out by something out of my control.
When we finally finished our transaction, the staff told us "We cannot believe how patient you all were" - but in reality, it was our deliberate decision not to spend our spoons on ranting and stressing out, but rather to trust that in the end it would all work out.
So, it all worked out, we had a few spoons in reserve for our hurried trip home (it was intended to be more leisurely), and we are still speaking to one another .
What is the point of this story? Instead of stressing out about how many spoons you have, which in itself uses up spoons, accept that some days will be good, you'll match your spoons to your activity, and relax. Accept also that some days will be bad, use the minimum number of spoons, put the rest in the drawer for tomorrow, and relax.

Now, think about your lists. Do you really need long lists of things you "should do"? Or would it be better to get up in the morning, see how you feel, and make a list of 2 or 3 things you can reasonably accomplish today. The last item on the list should be something you really enjoy and that doesn't take much energy - a short walk (even to the end of the block) a bubble bath, call a friend of family member...
Make it achievable - not "do Laundry" but "Wash and dry towels" or "Wipe down counter and appliances" instead of "Clean Kitchen"
Maybe "Spend 15 minutes sorting accumulated paper & throw away/recycle ads, envelopes, and unneeded stuff" is better than "sort and file everything" - especially if it is all piled up. You can even do that sitting on the couch with a coffee table or card table in front of you. Make filing it, or paying bills a separate task on a different day.
Remember - a list is no good if you don't do it - and a long list that depresses you is even worse - it spends your precious spoons on stress.

Have you tried to use a short list "Just for today"?
Sue

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I came across this list of “end-of-life symptoms.” My daily activities are intended to combat as many as I can, starting with getting more oxygen to my brain ! Significant Fatigue: Profound exhaustion and weakness are common signs as the body’s systems gradually shut down. Energy levels decrease, making even simple tasks challenging.
Reduced Appetite and Weight Loss: A loss of interest in food often occurs, leading to noticeable weight loss. This decline in nutrition can weaken the body further.
Increased Sleep: A substantial increase in sleep, including daytime naps, is a common sign. The body requires more rest as it nears the end of life.
Breathing Changes: Irregular breathing patterns, including shallow, rapid, or irregular breaths, may develop.
Decreased Mobility: As the body weakens, mobility declines. Elderly individuals may become bedridden or require assistance with most daily activities.
Mental Confusion: Cognitive changes, such as confusion or disorientation, can occur. This may be due to reduced oxygen supply to the brain.
Withdrawal and Social Isolation: A desire for solitude and reduced interest in social interactions often emerges.
These symptoms can be indicative of the end of life, but they can vary from person to person.

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Wow. Not a great way to start the day. Why on earth would you put this here ?

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Hi Sue,
Thanks for your ideas! It was kind of you to reply. I plan to come back to your post to see what I can do. Kinda tuckered out now.

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I am trying to stay positive and always have a list to guide my priorities, but find I’m often “exhausted, achey, and cranky.” I get so frustrated! Yes, I’m early in the MG treatment process, but I can’t even get through a shower without resting. In fact, I’m sitting here in a robe right now trying to catch my breath. I still need to get dressed and take care of wet hair. Sometimes I just feel like crying.

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I have the same problem. I get out of breath and my heart beats like a drum in my chest just making the bed. So, now I pull the sheet and blanket up and straighten it out, then I watch a little TV or play on my computer. When I am ready, I go back and finish it up. Some days I don't make the bed because I want to do a load of laundry. It's all about not minding doing it in stages. Give yourself a break. I think you are beating yourself up because you wish you could still do it like before. Well, guess what, you can; it's just doing it differently and ending up with the same results. Accepting that you have to do things differently than before is the hard part. Just remember you can do it. Good luck and keep smiling.

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