I know I've linked to the spoon theory before, but it is such a good analogy and so fitting, I think it is worth another look. This time I was brave enough to go through my day's routine and come up with a basic idea of how many spoons certain tasks require, and come up with an idea of how many spoons I actually have right now. Every time my number of spoons drops significantly as my disease progresses, it is shocking and unbelievable. Sometimes it is gradual (because I do have more spoons in a high than I do in a low) and less noticeable, but there have been a handful of times when my spoons just disappeared and I hit a new "baseline" and had to re-adjust my days to what I am capable of. I'm leery to post this because of the attacks and lack of help we have received in the past, but I think people who are learning and suffering need to know they are not alone, and also, be spurred on to action now. You need to fight now for that diagnosis and treatment that you need, or you will start to lose your ability to do so.
I'd say this week I've had roughly 20-30 spoons per day. Hard to know exactly since every day is different both in the number of spoons I have and the number of spoons I need. I generally don't know upon waking that I have more or less, I just find out when I run out. It doesn't hit you gradually, either you have the spoons required or you don't, and when you don't, you're done. Resting doesn't bring more, and using more today does not equate to building up stamina giving me more tomorrow. That is something few understand. That system in my body is broken right now. Every system is, really. Overdoing it can lead to the need for strong medications, hospitalization, or injury and illness. Actually, it will.
I can count spoons really easily now that I have so few! So here goes:
1 spoon to get out of bed
1 spoon to pick out my clothes
1 spoon to use the restroom and put on deodorant in the morning.
1 spoon to brush my teeth and comb my hair.
1 spoon to weigh myself and note my symptoms (I track them) for the last day/this morning.
2 spoons to actually dress
1 spoon for each time I go to the bathroom (and then back to my chair) throughout the day
2 spoons for each time I have to correct, reprimand (yell at! lol) a kid
5 spoons to add wood to the wood stove
2 spoons for every time someone complains to me about their life and stressors
10 spoons if someone is confrontational or rude to me
5 spoons extra if it is a hot day, drawn right off the bat, and probably 5 more for every 2 hours I sweat after that
10-15 spoons to shower or bathe, and another 10-15 spoons to dry off/get dressed afterwards
5 spoons to get myself a snack (without cooking/prep involved)
15 spoons to make food that involves cooking at all or prep time (ie, preheating the oven, boiling water, etc. not "cooking from scratch")
5 spoons to help a kid get dressed, with shoes and coat (I have 6, but not all need help)
5 spoons to walk to the car
5 spoons to pick up some extra garbage or dirty clothes as I walk to the bathroom (added to the 5 spoons for going to the loo)
5 spoons to undress and get ready for bed
5 spoons to socialize with others (it takes energy!)
10 spoons to play a video game that is timed (So I just can't/don't)
10 spoons for looking at bills (for the stress/anxiety it brings, along with the confusion of hospital billing and insurance)
2 spoons for answering the phone each time it rings (I don't know who is calling and I am not a phone talker. Britton and mom have their own ring tones on my cell, which helps)
5-20 spoons for someone coming over to visit my house
10 spoons if I let myself think about how we will manage another surgery recovery (if surgery actually works this time)
So, now start to count up your day (and healthy people do FAR more than this because I did far more than this) and when you hit 25 spoons, stop. See how far you've made it today. What happens for the rest of the day? I am not able to nap or just "do nothing" for the rest of the day. Did you notice I don't have any "fun" activities on there? I don't usually get to do those either, despite having many interests and abilities, because the choice has already been made that family come first and I do not have the energy for extra. I wish I did, but you do what you have to do to survive. Right now my creative outlet is in the form of online posts and energy conservation. lol And my method of serving and interacting with others is also on the internet. I have a continual stream of new "friends" on facebook, Cushies, who are looking for support and information. And I LOVE to help and teach others. In real life, I only see two adults: my husband and my mother, with the exception of when I leave the home (almost exclusively for church, about 2-3/4 Sundays a month --but getting to church and being there costs me about 50 spoons, so you do THAT math). I don't really get visitors, and that is just as well, because I don't have the energy for that either even though I miss having friends and doing fun things. Heck, I miss cooking and cleaning!
I know it is hard to understand, and people really cannot fathom it because it is so foreign to what they know and their norm, but I hope this has helped explain some of what it is like on a daily basis.
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