Friday, May 13, 2011


I was planning to post this last night, but Blogger was down so it's worth posting tonight.

This is an article that my friend showed me a few years ago after I was diagnosed with Ehlers-Danlos Syndrome. "The Spoon Theory" has resonated deeply with me ever since. I don't blame people for not understanding what it's like to be me. How can someone who is healthy, and normal, and has loads of energy, who doesn't wake up to dislocated limbs, or complete loss of joints understand what someone who DOES have all those things feels like? It took my own husband reading my MRI scans to actually grasp that I wasn't "putting on" or exaggerating how bad it was. It took some of my doctors over a year to take me seriously about the pain. So I don't get offended that someone doesn't understand. I have no idea what it's like to live with Cancer or a terminal illness, they have no idea what its like to live with EDS. Even though the spoon theory was written for Lupus it still applies for EDS and most other chronic conditions.

I have a finite amount of spoons. Some days I have more, some days I have less. Some days I barely have any at all, and other days I have nearly as much as a normal person. Some times I borrow spoons and then I'm short the rest of the week as I recover, sometimes my pain meds gives me a few spoons and sometimes it takes away a few.

Yesterday was one of my lowest spoon days. The whole house has been sick with a cold/tummy bug. It has completely wiped me out. Especially because Charlie has been hit hard and only wants me and my nursies all day, and all night. And I mean all night. Sleeping in 10 min. increments when you are sick yourself is a recipe for disaster. I am not a TV watcher. I watch maybe one show a day, unless Chris and I watch a bit at night while we unwind, but yesterday I couldn't find the strength to even get up off the couch. Having OCD on top of this drains my spoons even faster. My OCD causes my anxiety and stress to go way up when my house is cluttered, dirty, or chaotic. So I sat on the couch and thought of the laundry piling up, the carpets that needed to be vacuumed, the kids that should be interacted with, and it drained me further and further.

As soon as Chris got home I had to leave. I couldn't stand to be in the house for another second. I had no energy, and I actually sat in the car and cried for a few minutes because I wasn't sure I could even leave! I figured I'd go to Target, and then to dinner, and hopefully relax and recoup. I love Target. I was in Target for less than 10 minutes because I could hardly walk. I knew it was time to leave when a sales associate came over and took my basket from me saying it looked as if I was going to keel over. Times like that are quite embarrassing for me. How do you explain to stranger that you have an "invisible illness" and it's not that you are weak, or whatever may be running through your head? Sometimes I feel I need a sign, "Yes, I'm young. Yes, I LOOK fine. Looks can be deceiving. I am sick."

I went to my favorite Mongolian BBQ restaurant after that and for the next few hours I had great girl time with my Best Friend, Sandra. I didn't have to walk, I didn't have to put on, I didn't have to make excuses. It was absolutely exactly what I needed. The best part was returning home to see my husband had done all the things around the house that I couldn't!

Today I'm still wiped out, but I have more spoons than I did yesterday. I'm hoping that as the days go on this week I'll have more spoons, and on the days where I don't I know I've got an amazing support system to help me out.


  1. The spoon theory really resonates with me, too. Right now I'm only a kitty mommy so I know being a mommy to your crew must be very tiring with EDS, but you do an awesome job. I'm so sorry that you are feeling so bad. I wish you low pain days and low fatigue coming days soon. Take care.

  2. I'm gonna print out the spoon theory and take it to school on monday. since our job often includes working with people with chronic pain disorders, we could really benefit from understanding them the best we can.