Some of you know I have a type of seizure disorder. It affects my life more some days than other days. Until the last two years I’ve tried to pretend it doesn’t exist and avoided telling people about it. Thankfully, I am in a good place – living in “prevention mode” by reading my body constantly and avoiding pushing myself too far so that I can do more in the long run. It’s taken years to “perfect” (and sometimes I still misread my body’s signals), but I’m at the point where I can prevent a lot and live my dreams!
After six years of trying to figure out how to live with a chronic disorder, I came across an article today by Christine Miserandino that provided the PERFECT way to explain to others how this works. Although she is speaking about lupus, I feel that her “Spoon Theory” explains my situation perfectly!
Christine explains that having a chronic illness is like waking up in the morning with a handful of spoons. You may have 12 for one day or 6 the next, but everything you do in the day, from getting up in the morning to making breakfast to riding the train for your commute, costs 1 spoon.
“…when you are healthy, you expect to have a never-ending supply of spoons. But when you now have to plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some spoons along the way, but it helps to know where you are starting.”
Unplanned things like working an hour overtime, missing a meal or “just” dropping by the store to grab some milk all cost spoons. You are “forced to make choices and think about things differently,” she says. “When your spoons are gone, they are gone.”
“I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Honestly, I could not believe this article could so accurately explain where I’ve been in the past and where I am sometimes when my health flares up. Yes, right now I’m doing good. I have a job that I can do from home, I get to work in the temple, and I have a calling in my ward. But I am ALWAYS counting spoons, checking to see how much of my limited energy I have left for today.
That’s why I so often am unable to be involved in ward activities or rarely hang out with friends late in the day – evenings are generally a little tough for me. Sure, I can come to an important meeting Thursday evening, but I have to use as few spoons during the day as possible to “save up” as evening events often “cost” double or triple the number of spoons; and I will often have less spoons the next day as a result. The reason I have to be so careful is if I hit zero spoons, it doesn’t just mean I’m out for the day – it means I’ll have a seizure which seriously limits the spoons I have for the next day, week or month.
“The hardest thing I ever had to learn is to slow down and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand that everything everyone else does comes so easy — but for me, it’s 100 little jobs in one…I miss never having to count the spoons.”
It’s like Christine took a section out of my journal: “The hardest thing I ever had to learn is to slow down and not do everything.” I went from being the person who slept 3-6 hours per night, taking a full load of classes, working full time, and attending all my church meetings, to a person who has had to simplify life down to the things that REALLY matter to me.
“Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday?”
That’s the thing – having to count my spoons has helped me focus my life on what matters most to me. I have been so blessed to be able to travel the world, be a relief society president, hold a wonderful job at the Church, and even do trail runs. These are miracles and a result of “saving up” untold number of spoons during the months prior.
Do I live life fully? YES.
Do I pack my life full? No.
And, you know, it’s finally working for me. 🙂
I just wish all of my friends, co-workers, potential boyfriends, and fellow church members, could understand that this is why I missed your birthday party or why I can’t come to FHE or why I was able to go on a jog yesterday but I’m at home today in my PJs. And, just know that sometimes, no matter how much I “save up” my spoons, I wake up to a 2-spoon-day and I have to cancel all of my plans. And I’m sad that that means I can’t be with you today.
Like I said, I live in prevention mode now. I am constantly saving up my spoons so I never run out. As a result, I very rarely have seizures now! (Yippee!!) Honestly, I don’t know if this disorder will eventually disappear (my vote!) or stick around for a while more – but I can LIVE my life now, so I don’t really mind. 🙂
This lifestyle that seemed like an impossible way to live six years ago, enables me to live life to the fullest and do things many people never have the opportunity to do. And when it flares up and things get bumpy again, I just hope that whoever may be thinking, “but she doesn’t look sick” or “why didn’t she come to my party?” might read this and understand.
So, yeah, I sacrifice going to a mission reunion so that I can (hopefully) make it to a meeting for my calling the next day. I sacrifice partying late with friends so that I can use my spoons on a hike the next morning to reach my exercise goals.
But know that when I DO spend time with you, you’re WORTH EVERY SPOON.
I’m so grateful to Christina for finding the perfect way to describe this! Feel free to comment below or share your experiences with the Spoon Theory.
Oh, and I found this great meme that shows what I looked like when I read her article this morning… 🙂