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

@momdukes Try these 2 organizations. They should be able to help you find doctors.
Genetic and Rare Diseases:
https://rarediseases.info.nih.gov/
And, NORD , National Organization for Rare Diseases:
https://rarediseases.org/
Please let me know when you learn something!

Thank you. I will definitely look into this lead and let you know the outcome.

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.

@strongevergreen I’m not sure why you posted this statement about end-of-life. I think this discussion is about how to live life, the best one can with what one has been handed - not thinking of end-of-life.
Can you help me understand why you posted about end-of-life?

I posted the end-of-life text I received because for me it was an inspiration to guide my behavior to avoid developing those very symptoms. I don’t think of “end-of-life” as a curse — more of a reminder of why I should live with mindfulness in the present moment. I’m so sorry if my post offended anyone

Recently, I discovered the author Margareta Magnussen and her two amazing books: The Gentle Art of Swedish Death Cleaning and The Swedish Art of Aging Exuberantly. Both have changed my thoughts about death AND ALSO ABOUT LIFE. I highly recommend both books. Also, I have always valued knowledge over ignorance, especially when it comes to things I fear and don’t understand. Having barely survived the deaths of my Grandmothers, my parents, and my siblings, I know none of them died because they “gave up” or “stopped fighting.” Learning about death helps me understand what their final moments on earth were like. It helps me connect with them even now. I believe I was guided to read and share the end-of-life symptoms as their way of communicating with me…. to lessen my fear of my own inevitable death. If my posts are offensive to ANYONE, I will refrain from posting in the future. But let me conclude this post by saying there is no need to fear ANYTHING. In my opinion, the choice for me comes down to one question: should I spend my energy worrying about something or spend my energy praying about it ?

is exactly how i go day > day - so many unknowns, serious lack of interest from anyone other than primary. all i want is answers - all a senior single female is getting here is ADR runs to ER, totally messed up visit notes & summaries, so i need to know what is out there to avoid as much as possible, as things of concern are adding on. Look at any weather forecast - tells what we may/can/will expect so we can be ready - same this. Proactive vs reactive. Wisdom can be found anywhere - in words or deeds, from others and our own selves. What seems like a negative can be the most powerful positive if it becomes a "lightbulb" moment when things appear dark.

One bit I learned from the Magnusson books is this: I have a collection of Polish Pottery. I enjoy seeing them displayed in my house. I would have even more joy giving the pieces to someone who also likes them and perhaps seeing my gift displayed in HER house ! If I die without giving them away, it will become an obligation of my survivors to dispose of them. Better the former more joyful choice. I’d never thought of it that way before reading her books

HI everyone,
I just reread my post below. Warning: It is a "downer." It doesn't have any productive suggestions. If you are feeling down, then please don't read more. Haha.
If you are feeling pretty good, then please read more and leave some suggestions. Thanks in advance! 🙂

I make lists, too. Recently, I have become discouraged by my lists. They just get longer. It seems like every time I get mail or go to the doctor, I have 3-5 more things to do. I cross one thing off but have to add more.

I have become discouraged with the spoon theory. This is probably just my weirdness, but I think I am so afraid to use up my spoons (of energy) that I don't get started on my list. And I get decision fatigue before I even get started!

Becky, thanks for starting this topic! Obviously, I need it!

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