Spoon Theory: Why give a fork how many spoons someone has left?
"Most people don’t think twice about the energy it takes to shower, get dressed, and drive to work. Most people can go to the grocery store in the morning and make dinner in the evening. Most people can make plans and keep them."
"When you have a chronic disease, you’re not like most people. Multiple sclerosis (MS), autoimmune forms of arthritis, and many other conditions can cause extreme fatigue. On a bad day, you may not have the strength to even brush your teeth."
'In a blog titled “The Spoon Theory,” Christine Miserandino describes how she showed her friend what it’s like to have lupus. (The autoimmune disease often causes fatigue, fever, and joint pain, among other symptoms.) While sitting at a diner, Miserandino handed her friend 12 spoons. These represented units of energy. She then asked her friend to describe the typical activities of a day.'
"Miserandino took away a spoon for every single task: showering, getting dressed with painful joints, standing on a train. Skipping lunch would cost a spoon, too. When the spoons were gone, it meant there was barely the energy to do anything else."
In Theory...Sure...But Who Cares?
I get the theory behind it and how it might help with metaphorically communicating the impact of living life with chronic illness. However, as someone living with Systemic Lupus Erythematosus (SLE) as a father, husband, son, friend, full-time worker, and manager, I can tell you no one cares.
And nor should they care, and that’s truly okay.
Those who don't care are human beings too.
They’ve got enough things going on in their own lives.
Does it mean those of us with chronic illness, comorbidities, pain, and/or fatigue suffer any less?
No, of course not.
If anything, only those with illness may care and understand when communicating with one another about our illness or severity. I imagine it can also be a helpful method of educating someone newly diagnosed. It certainly would have helped me understand years ago versus vague guidance of "you are at extreme risk", "you won't be able to do some things anymore", or "just try to live your best life."
So by no means do I attempt to discredit the work Christine Miserandino has done to help the chronic illness community. I sincerely appreciate all Christine's work helping more people understand what living with chronic illness is like. This article is focused on presenting the stark reality someone may encounter using my personal experiences.
Never Enough Spoons
So whatever metaphor you wish to use, spoons, batteries, sparks, Energon cubes, Midi-chlorians, power pills, or unobtanium, the concept is the same.
Let's try it...I'll use AA Batteries.
So I'm your standard toy robot that takes 12 AA Batteries.
Okay...fine...make that a big and overweight toy robot that has more Xs than Ls in his shirt size.
So I take 12 AA fully charged batteries to make it through a 24 hour day.
Except I'm faulty. I use up more energy and at a faster pace.
I consume this energy doing the very tasks life needs and requires such as...
Robot Life - Start
- Get out of bed
- Make breakfast
- Take medications
- Shower, Brush Teeth, Groom, Pluck Walrus Whisker size hairs off my ears...STOP...TOO MUCH INFORMATION!
- Commute (normally a 2-hour drive, but currently a walk of 25 yards)
- Work 8-12 hours
- Various unscheduled household chores...clogged toilet, twisted garden flag, bring in delivery packages, tree limb down, shovel or leaf blow driveway, spill coffee, etc.
- Try to exercise
- Family Time
- Shower, Brush Teeth, Pluck a Seal's Whisker size hair off by the tip of my nose that I missed in the morning...AGAIN...WAY TOO MUCH INFORMATION!!!
- Go To Bed
- Wake up in pain a minimum of 2-3 times in life
Robot Life - Repeat Daily
Okay, so 12 batteries.
Now I would expect the majority of you reading this to be thinking "that's nothing, I do way more in any given day. Well except plucking the marine mammal whiskers, those hurt like heck."
Me too, I handled a lot more for many years.
Even for years when I knew I was sick and something was severely wrong.
Now on an average day, my 12 batteries are completely exhausted and out of energy by lunch. And given the world and my job does not stop just because I am out of all my copper tops, I turn to stimulants and food. (Legal stimulants...don't get excited, this isn't a crime novel...besides I take so many legal medications I already look like a drug mule when I travel for work).
So I drink greater than 64 oz of coffee per day, take sublingual vitamin B, eat dark chocolate, eat almonds, snacks, more coffee, snacks, coffee, and more snacks. Whatever it takes to push me through the rest of the day. So now that "more Xs than Ls in his shirt size" is probably taking shape for you...cringeworthy pun intended.
I honestly try for healthy snacks like fruit, nuts, vegetables, and teas (ginger, turmeric, lemon), but two of my medications are said to completely impair my metabolism leading to an uphill battle against weight gain.
Speaking of medications. Of the baker's dozen prescribed to me, half cause tiredness and fatigue. So that sure helps things of course.
I described the average day above. I can say there are also days where I start completely out of energy. Simply getting up and making breakfast is too much and immediately sends me back to be bedridden for the day.
You may wonder, why even get up?
I need to eat to tolerate my morning dose of medications and limit the nausea one can cause. I always hold out hope that by taking my medications I will "snap out of it" and be ready to bounce out of bed. Sometimes it works, whether placebo effect or the medication and I up and online for work after taking a half-day sick time.
Other days I call out sick or use a vacation day to unwillingly sleep about 16-18 hours, which usually does almost nothing to recharge me.
Sometimes it's as much pain as fatigue that is draining my energy. One night this past week I was up about five times because it felt like Bob Villa was representing Craftsman and Tim Allen was representing Binford in a power drill contest inside my knees. No amount of prescription compound pain cream or Tramadol was chasing them away to allow me some sleep. No sleep means the next day's batteries are already being used up.
Some days I get up and feel good and eat breakfast, but then I feel ready to collapse are taking a shower or dressing. There is no rhyme or reason to it. Trust me I've tried all sorts of patterns, diets, and preparation techniques.
There is nothing more that I want in the world than to go back to years ago when daily task energy was not even a thought, like breathing.
Pause The World
In reality, I need 24 or more batteries to function through the average day.
But if I don't have that many, what choice have I got?
And that's where no one cares comes in.
Should I expect my job to pay me a full salary for a half day's work?
No, of course not.
Should I expect the world to go on pause whenever I'm out on energy?
Should the very Doctors I see, Doctors who know the full extent of my disease via labs and a DNA test grant me late cancellation policy exceptions?
"Sorry, ran out of AAs an hour ago, going to have to miss my Rheumy appointment today. I did try grounding some dark chocolate and almonds in Espresso with a Vitamin B swirl for a jump start, but it's a no-go. And my insurance won't pay for the Shift Worker's Syndrome stimulant pills ($800 for 30) you prescribed, so can't take those."
Also of course not.
No One Cares
People have their judgments.
Some of you reading this might think this is the biggest spoonful of wolf crap you've ever heard. And that's okay. We all get sick and we all get old. Odds are you will experience what I described at some point. It simply came earlier for me with SLE.
Many of my coworkers over the years have expressed callous judgments. Things that made me shake my head in disbelief or even become irritated and resentful...
- What did you call out for yesterday? To prepare for the Fantasy Football Draft? (person who worked for me)
- He's lying about having graduated from the US Army Airborne Infantry School and parachuted from planes. Look at him, he's fat and out of shape. (supervisor speaking to a coworker who did not realize I was in the next room)
- You workout? It doesn't seem to be helping you. (multiple times)
- Why do you have a road bike? Did you cycle? (face of disbelief)
- We think you were out yesterday to attend a NY Mets Spring Training Game. It was a bright and sunny day for it. (coworkers...repeatedly...for days)
- He needs to rest after a long day of travel and client meetings. Just as well he's the poor company to be with on trips. Doesn't drink or want to go out at night. (coworkers on a company trip)
- Sharing this email with you. He's got some new biologic medication with side effects. Whatever. What does he do all day? (supervisor sharing my email with a coworker)
- My friend has Lupus, she said it's not that bad. Takes aspirin for it. (HR director)
- He needs to sit inside out of the sun...(eye roll)...waste of a sunny and cloudless day. (Founder of a company who was notorious for his special food orders about where exactly dressing and mayo needed to be placed on his plate when served)
...but I've learned to roll with the punches.
These are human beings doing what humans do best at times...form their own opinions or judgments about things they know little or nothing about.
There Is No Spoon
So in conclusion, I like the theory itself. You can probably tell that! I utilized it to communicate with you as a reader.
But selfishly, unless it helps me defeat pain and fatigue, it’s not a pause button on life when I’m out of spoons or batteries.
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