12 Spoons, 4 Quarters

It's hard to explain how I am feeling from day to day right now. I could be completely worn out but have done nothing at all all day or I could have all of the energy in the world but my body is screaming in pain and I am throwing up everything I eat, and there seems to be no in between. I feel like the only constant in my days right now are that the mornings are the best parts of my day and then I take my Lupus meds at lunch time and it all goes down hill after there.

I have it in me to isolate myself when I am not feeling well. I do not handle pity well and to be honest have trust issues when it comes to gossip so I tend to keep myself away from almost everyone. Now, is this a smart idea? probably not, but it's my go to.

I do have people that I call my four quarters, thanks to my sweet friend Stacey who taught us the theory about, when it comes to friends, it's better to have four quarters than a hundred pennies. Meaning that having four friends of greater value to you is so much better than having a hundred friends that don't have as much value to you and your heart.

I have always struggled with the idea of being a bother to people and I am the worst at accepting help. I know in times like these I should probably ask for help but it's something that was not inherently wired into me. Both of my parents are the exact same way. Cooper has been a God send when Justin is out of town. He is an excellent cook and seems to understand those moments that I am not ok and will often ask if I am ok. I struggle with putting all of this on such a sweet kiddo but he is on the frontline when Justin is home. Having my sweet kiddos, my amazing husband and those friends that I call my four quarters has made life easier in all of this.

Though I do have those friends and family that help me get through, it is tough to explain what wears me out right now. While doing my hours of research on both Lupus and Ehlers Danlos I came across something called the Twelve Spoons Theory. It was originated by Christine Miseranddino to explain to friends and family what daily life looked like for her on her own Lupus journey.

The theory goes that every single day you are allotted 12 spoons in the beginning of your day. Each daily activity takes one or more spoons away from your daily allotment. For example, Waking up and getting out of bed could cost you one spoon, making breakfast could cost you two spoons and eating could cost you one more spoon leaving only eight spoons to get through your day.

It is possible to use a spoon from your next day but then you start your next day with a deficate making the next day and following days after it just hard to catch up. I use my own horrible examples as an explanation on when you have a deficate. I did a fourteen hour photo shoot last Saturday, followed up by a ten hour photo shoot on Sunday and I have been struggling with that deficate all week. As I journal every day, this past week I have started my day with feeling as if I have seven or less spoons to start my days. You can rejuvenate how you feel with rest but you do not accumulate spoons to be used in the future. Each day starts with the twelve spoons and it is up to you how you use them.

The tricky part in all of this is finding the things that allow you to wake up with twelve spoons everyday and then not to go over tthat alotment. The hydroxychloroquine that I am on just kicks my butt so simply taking that medication is an automatic deduction for me and then I have to spend the rest of my day figuring out what I can do with my remaining spoons. Most of the spoon expenditures change from day to day but laying out what makes you feel a certain way from day to day can help you plan your life and move forward.

I know that as time goes on, taking this medication will become easier and may only cost me a spoon or two but currently, I start the day with a major deficite just by taking the medication that I do. It is all a process that seems to change from day to day and we are all learning. I appreciate everyone who is on this journey witth us and can't thank those enough who have been our "four quarters" and for stepping up so much and helping. I really hope that the days ahead will lead to less days of using all of my spoons but currently the spoon life is the best way to control my living and how I handle life.