Here is my entry for Marsha’s WQWWC (Writer’s Quotes Wednesday) #19.
One thing I don’t mention on my blog a lot is that I suffer from chronic illness.Regarding chronic illness I have lipedema and lymes disease. Fortunately both are pretty much under control. But years of having both diseases has caused a lot of damage to my body. It’s difficult for me to walk and breathing is always an issue with me. And now the past six month, long hauler Covid has really taken a toll on me physically.
When I was first diagnosed with chronic lymes disease, I ran across this “The Spoon Theory.” I shortened it my post, so please click on Christine Misrandino’s name below to read the full version if you are interested.
The Spoon Theory
My best friend and I were in the diner, talking. As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. At that moment, the spoon theory was born.
I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables.
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine. I quickly took away a spoon and she realized she hasn’t even gotten dressed yet.
Showering cost her spoon, just for washing her hair and shaving her legs. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
I’ve gathered a list of challenges and their hosts. So if you know a challenge host, please direct them to my blog. Feel free to contact me anytime. I hope everyone will be able to use my lists.
Qi (energy) hugs