“It’s like 10,000 spoons, when all you need is a knife.” ~ Alanis Morissette
Alanis might only have needed a knife in her song “Ironic”, but what I recently found out is that 10,000 spoons is a person with an autoimmune disease and chronic illness’s dream. I recently came across the term “Spoonie” when describing a person who has an autoimmune disease/chronic illness. Within my almost 16 years of being diagnosed with Rheumatoid Arthritis (RA), I never heard this term ever used until recently. I have mentioned in past blog posts that I am pursuing being an ambassador for the Arthritis Foundation and became a crew member for the National Arthritis Research Foundation. Through this recent journey I kept seeing the term “Spoonie” pop up. The only type of spoonie I thought of was cuddling and I thought to myself, well I do like to cuddle. BUT why am I being classified as a “Spoonie” in reference to my RA?
After a simple google search of “what is a spoonie”, I came across what is known as the Spoon Theory by Christine Miserandino. Christine’s best friend asked her what it feels like to be sick. This is a question I get often as well, especially more recently. It really is so hard to truly explain the fatigue, the pain, the inflammation, the daily challenges and really do so in a way that you are understood. It is hard to explain to someone that Rheumatoid Arthritis is not the same thing as arthritis that you get as you get older. Christine, in the “Spoon Theory” explains in a way by using spoons. A healthy person, especially if you are young, starts their day with an unlimited amount of spoons; endless possibilities to do whatever you desire. When you have an autoimmune disease you have to know how many spoons you are starting the day with. Each task, even sometimes the smallest of tasks, costs a spoon. You have to plan out your day so that you do not run out of spoons. Christine goes into great detail, making her friend play out a day as if she had a certain amount of spoons to use like she does everyday. For the full spoon theory check out the following website. Spoon Theory’s full story
It is Christine’s last paragraph that completely hit home.
“Its hard, 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 is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.”
Ever since I went off medicine (read my other blog posts to find out why I went off medicine if you do not already know), my number of spoons varies day by day. I still have not been able to fully grasp how many spoons I have to start with and I definitely miss the freedom of not having to count “spoons”. I have the hardest time slowing down and trying not to do everything. I am incredibly guilty when it comes to that. I have a hard time because I made a promise to myself to never let RA keep me from doing something that I want to do. Lately, my RA has really been testing me especially when it comes to trying to train and prepare for running my first half marathon off medicine.
Last Saturday, I signed up to run a 5k to raise money for a Cure for Blood Cancers. My two friends started a team for the run in memory of their father. This was going to be the first time I would be running in the morning in a long time since mornings are the most difficult for me. This morning was no different. I was having difficulty walking and really had no clue how I was going to run. When I got to the run, I was so excited to see everyone on the team that it really took my mind off of the pain that I was feeling. Right before we were about to start the run I was introduced to Governor Murphy and his wife who were also there to run and raise awareness. It was such a breath of fresh air to see how down to earth they both were as well as upbeat and positive. I ended up running with the both of them the whole time which completely distracted me. They did not know this the day of the run, but I would like to give a special thank you to Governor Murphy and Mrs. Murphy for making my first morning run in a while a success! My RA certainly tried to test me this morning. I might have used a majority of my spoons before noon even hit, but I could not get a smile off my face because I stuck to my promise.
I did not have as much success a couple days later. I was on my Spring break this week from teaching and I decided to do some heavy spring cleaning around our house. I spent the day deep cleaning the bathrooms, kitchen and the rest of the house along with reorganizing our closet. After spending the day going non stop, I decided to do a long run with Chris when he got home from work. We were running ten miles, something that was not new to me since I have trained for marathons in the past. We had our route planned out and we set out to start our run. Around mile 8, is when I realized I was running out of spoons. My feet felt as if they were throbbing out of my shoes and with every step the pain was getting more intense. We were running down the road leaving Cattus Island Park when I felt the road appearing more and more narrow. I ran out of spoons and the pain caused me to come to a halt. I begged Chris to continue on. I knew the route and knew he had a mile loop before we would meet again. We would then have one more mile to make it home.
While I walked to the spot where we would meet again, I was a roller coaster of emotions. I was frustrated that I had to stop, angry at myself for not planning out my spoons better, and at the same time proud that my husband was doing awesome on his longest run to date. I kept beating myself up while I waited at the meeting spot. Anger. Frustration. Disappointment. This was when I knew I had to dig deep to find that reserve spoon. I was not going to finish by walking home. I was determined to finish the run on a positive note. I told my RA and my body, “Sorry, not sorry. I am not letting you win.” We ran the mile home. This was the first time I got to the point where I had to use my reserve spoon. I know I need to listen to my body better now and I am still learning. This is definitely a huge learning curve for me, but I will not let RA win.
Today marks 12 days until our half marathon. I know I have not been training anywhere close to how I have for past runs. I know beating my PR is a long shot. I know that every day is different and I know my spoon count changes daily. I know it will be my longest run being off medicine. I know that mornings are the most difficult for my feet to function. I have so many I knows that seem to stack up against me. HOWEVER, my biggest I knows put them to rest. I KNOW that I signed up to run the race in support of the Arthritis National Research Foundation. All money donated will go to funding arthritis research to find new treatments and cures for rheumatoid arthritis, lupus, juvenile arthritis, ankylosing spondylitis, psoriatic arthritis and other autoimmune diseases. I KNOW that I made a promise to myself to never let RA interfere with what I want to accomplish and I will keep that promise to myself. Last but not least, I KNOW that no matter how many spoons I wake up with that morning, I will be sure to dig deep for that reserve spoon and finish. Alanis Morissette had 10,000 spoons and all she needed was a knife. Well Alanis, I have that one knife (a sword to be exact) and I am determined to Slay RA with it. Now isn’t that ironic? Don’t you think?!
The link below is my fundraising page. Thank you so much in advance for donating. There is no donation amount that is too small. I am beyond appreciative and will run with each of you as one of my extra spoons on the day of the run.
Stay tuned for my elimination diet progress.