Today, I am all out of spoons. And it is only 1:30pm.
Christine Miserandino, a woman living with Lupus, came up with The Spoon Theory. In an effort to explain to a friend of hers what it is like to live with a chronic and invisible illness, she used a handful of spoons to represent all the units of energy she has to use each day. She gives her friend a handful of spoons and explains that a typical healthy person wakes up with unlimited spoons for the day to do all the daily activities he or she pleases. A healthy person doesn’t have to think about his/her spoons. But a person who suffers from chronic illness? They do not wake up with unlimited spoons.
So she has her friend start to tell her all the little things she does from the time she wakes up in the morning (opening your eyes, turning an alarm off, getting up out of bed, going tot he bathroom) and as her friend explains each step she takes away one of her spoons. Soon her friend is left with only a couple spoons and she had barely gotten through a simple morning routine! You see, those with chronic illness wake up with only so many spoons and they need to be careful not to use all their spoons up too quickly, because once you are out of spoons, you don’t have any left.
In many ways, I think most everyone can relate to The Spoon Theory once in a while. Think about when you have the flu. And you have to pee AND you are hungry. And you lay there thinking “If I get up to pee, will I have the energy to make myself a sandwich?”
But for those with chronic illness, they wake up with limited spoons EVERY DAY, not just when they have the flu. Many of my fellow Juvenile Arthritis Mama’s share this Spoon Theory with others to explain how life can be for our kids. Yes they LOOK FINE, but they aren’t. They wake up with less spoons than their peers. They have to think before they use a spoon sometimes so they can be sure they have enough spoons later for something else they want to do.
My daughter E has been pretty lucky in her Juvenile Arthritis. Her case is on the mild side and we have been able to control it quickly. Most days she wakes up with plenty of spoons. We are always told “She looks so great! You would never know!” In which I respond with “Yes, but that is because of the strong medications she is on.”
However, these strong medications that we are so thankful for…they rob her of spoons in the days following her injections. We give her a once a week injection of a medication called Methotrexate. It is a chemotherapy medication that is used in JA and RA to suppress the overactive immune system. In the 1-3 days following her injection, she sometimes wakes up in the morning withÂ much less spoons than normal. These days, E has a hard time. She is whiny. She is argumentative.Â She can’t make decisions. She needs more sleep. She needs more hugs. She needs more love. She needs my patience.
Here is the thing about the spoon theory. It doesn’t mention the people who take care of the people with chronic illness. Though most of the time I wake up with an abundance of spoons, once in a while I feel my daughter’s illness has robbed me of my spoons too. Today, I felt like I was down to my last spoon at about 10:30am. I was on the verge of tears after E spent what felt like hours whining and complaining as we tried to get dressed to go to the park. Yes, getting ready for the park must have cost us each several spoons today. And I don’t think I woke up with too many more than that. So now that the kids are down for naps, I am sitting here, barely awake and holding onto my last couple spoons for the day.
Thank GOD for naps.
All this said, I am very aware that we are “lucky” in the terms of my daughter’s illness and that other families have it so much worse. As a speech pathologist, I sit back and think of the families of the children I have worked with who have significant delays and how some weeks they must use SO many spoons that by the weekend they may wake with only a few. I get that now.
So now me and my spoons are going to go and try to relax. May you all wake every morning with an abundance of spoons.
Jessica @ Preserving Life's Moments says
I hope everyone in your house woke up with lots of spoons today. I love that story and can relate it so well to my life. Just this weekend my 15 month old was really sick. I woke up this morning now feeling sick and wondering how am I going to get through this day. I am very low on spoons. I also have Crohns Disease. No one can tell when I don’t feel good and often I hear you look fine. Thanks for sharing that story.
Oh Jessica I feel you! 🙁 I hope this passes quickly for you and you make it through the day and get feeling better ASAP! And I understand the Crohns Disease as I have had long term issues and was dx with UC and then now Celiac’s. NO FUN! Other silent diseases…
Adrian Crooks says
Jessica & Katie I understand your sicknesses because I also suffer from UC it’s very tiring although you very often look ok on the outside.
Carolyn Wilhelm says
Thank you so much for writing this post. I am sharing this with several people. Our family can certainly related to all this information, spoons and Methotrexate and all. I know it won’t “pass” either. My daughter is 31. It doesn’t go away. Carolyn
You are welcome Carolyn, and I’ll keep your daughter (who is my age) in my thoughts! You are right…it doesn’t just “pass.”
I well understand how as a parent of a JRA’er you feel a lack of spoons. It’s common that caretakers are affected by the illness of the one they care for. It’s a 24/7 round of ups and downs for parents of any child with a chronic illness.
I well understand the effect of MTX on your daughter. I was dx’ed with sero-negative poly-articular JRA at the age of 7. I am now 35. When I was dx’ed only those with more severe cases were given MTX or any DMARD and biologics were unheard of in the JRA world. My case was considered milder so no DMARDS for me. But I was part of the studies for 2 NSAIDs and their use in kids. I was on ibuprofen and naproxen, which it sounds crazy now to say that I was a study kid for meds that are now OTC. I never took a DMARD until I was 25 after giving birth to my son, when the mega flare hit. Usually women have a bit of a remission during pregnancy. I likely did of my JRA but my fibromyalgia was more active than it has EVER been and my pregnancy was VERY hard. After giving birth, I felt great for about a month and then the post-delivery JRA flare hit. My rheumy did a Decadron shot and put me on Plaquenil, which was not the drug for me as I ran out for a month and didn’t even feel it. She then put me on oral MTX. It didn’t really help much. So we switched me to inj MTX. It only served to make me VERY ill in the 3-4 days after my shot and then it killed any energy I had for up to 5 days. Just as I was feeling more normal energy-wise, it was time for my next shot. I ended up not seeing her because I lost insurance. So I was again un-medicated. When I next saw a rheumy, he asked if I’d be willing to do a short trial of MTX to see if my body could tolerate it. I said sure. Needless to say that only lasted a couple of months. My dose was lower than many children tolerate. He said NEVER take it again if there is any way possible. He then switched me to Arava. I began to improve somewhat. Then we added Remicaide, which worked a little too well in that it got my immune system so low that it opened me up to multiple infections, which were masked by the large dose of prednisone I was on (20mg/day). I started out with a UTI. Then had a fall on leaving the hospital after being in there for antibiotics, IV fluids, Phenergan to control the nausea caused by the infection. within 2 weeks, I was told I had the UTI still as well as cellulitis, sepsis, some unknown problem from the fall that left me unable to stand or walk (likely soft tissue injury because it never showed on x-ray, MRI, nerve conduction studies etc). I spent time in one hospital to be released only to go back to another hospital to be kept there for 11 months where I was mentally out of it. During that stay, I had C-Difficile, sepsis, cellulitis, repeated UTI/bladder/kidney infections, Vancomycin resistant enterococcus(VRE), as well as an inability to keep any food down. The C-Diff and VRE meant that I was considered a “contact” patient. Anyone entering my room had to put on a gown and gloves. Even my then 8 yr old son. It was recommended they not sit on my bed. Eventually I was sent to a nursing home for rehab. I started PT in Jan 2011 and was standing by Mar 29, 2011 and walking by Apr 18, 2011. I left the nursing home for my own home in Nov 2011.
During that time, I had NO spoons! But they are slowly returning to me. I just want you to know that I do understand both your position as a parent of a child who has pain (my son has complained of pain off and on since he was 2 but there’s nothing that leads to a dx) and as a child JRA’er. I wish you an abundance of spoons.
Very insightful!!!! Thank you for sharing this story and analogy!
Adrienne Lucey says
You explained this well. Thanks