Spoons, Splat, Steps, and Gravity: Explaining Chronic Illness

In 2019 I started experiencing severe, unexplained pain. In 2020, less than a year later, I got a diagnosis. I have fibromyalgia. The good new was it wouldn't kill me. The bad news was... it wouldn't kill me.

In 2021 my daughter was also diagnosed with fibromyalgia. The good news was, I now had someone I could talk to about it who would understand. The bad news was I wouldn't wish this asshole of a disease on my worst enemy and now my own child, who I love very  much, had it. 

Through the marvels of modern medicine and the inherent weird and unpredictable nature of this disease, I am slowly getting better. Along the way, I have come across a few shortcuts for explaining our ever-changing symptoms.

Welcome to the Chronic Illness Struggle Bus, please take a seat. This will be a long and bumpy ride. Snacks will be provided as needed. Spoons will not. Enjoy your pudding. 

Spoons

When Christine Miserandino had a friend ask what it was like to live with Lupus she looked around the diner where they were having dinner, trying to find some way to explain what she couldn't put into words for herself. She grabbed all the spoons from their table and the surrounding tables and handed them to her friend. 

“When you are healthy you expect to have a never-ending supply of ‘spoons’. But when you have to now plan your day, you need to know exactly how many 'spoons' you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting

Christine posted about the experience on her blog “But you don't look sick,” explaining that chronic illness sufferers often have to make decisions between things like showering and having coffee out with a friend. It became an internet sensation. Since all chronic illnesses come with limited energy, people with many different chronic illnesses began to identify themselves as “spoonies.” 

Uses:

Spoonie: “I have about two spoons left. I can help you with one of those things, but not both.”
  “I’m all out of spoons. I’m headed home.”

Support person: “Do you have enough spoons to ____?”

Splat

Have you ever said “I feel like I've been run over by a truck,” as you heave yourself out of bed? Yep. Most of us have. People with chronic illness feel run over and run down every day. Maybe not by a truck, but run over just the same.

The Splat Chart was developed by Hidden Disability Advocate, Christina Irene as another communication tool. She says “Our conditions are often a “moving target,” meaning we never know how we’re going to feel from one day to the next. The one certainty is: Every day, we feel like we’ve been run over by something.”

Today I have been run over by a:

• Moped: My symptoms are always there, but today they're pretty chill!
  

• Sedan: Just a standard day with this illness. I definitely don't feel well, but I'm functioning
  

• Pickup Truck: I can almost get by like a normal person today, but everything is a huge struggle and I want my mommy.
  

• Tractor Trailer: Everything mean they ever say about this disease is true. I feel absolutely awful. If it's critically important, I'll do it. The rest of life will have to wait.
  

• Freight Train: All of my symptoms are at their worst. I'm totally miserable, and I couldn't keep my “invisible” illness invisible if I tried. If you need me, I'll be in my bed, and, well, just don't need me.
  

• Asteroid:  Zombies are more alive than I am
  
  

Uses:

My daughter and I often compare Splat Status in our morning phone calls. “What’s your Splat today?” “I’m somewhere between a pickup truck and a tractor trailer. Maybe a delivery van?

Steps 

When talking about chronic illness and/or chronic pain, we often overlook problems with executive function. 

Executive function describes a set of cognitive processes and mental skills that help an individual plan, monitor, and successfully execute their goals. The “executive functions,” as they’re known, include attentional control, working memory, inhibition, and problem-solving, many of which are thought to originate in the brain’s prefrontal cortex.

Someone who struggles with executive functioning will likely have trouble starting or finishing tasks, executing multiple steps of a project in sequence, and keeping their belongings organized. They may struggle to make decisions or lose important items frequently.
– Psychology Today

In a post titled The Coffee is a Metaphor, Tumblr user, dentalectomy, used the number of steps it takes to make a pot of coffee to describe living with low executive function. 

They posted, “Having one of those executive function days where everything is too many steps,” then explained how their brain parses the steps in making coffee. 

Good day:

1. Make coffee

Regular day: 

1. Put water in coffee maker

2. Put coffee in coffee maker

3. Turn on coffee maker. 

Bad day:

1. Take pot from coffee maker

2. Turn on the sink

3. Fill up coffee pot

4. Turn off sink

5. Pour water into coffee maker

6. Put coffee pot in coffee maker 

7. Open cupboard

8. Get coffee filter from cupboard

9. Get coffee beans from cupboard

10. Put filter in coffee pot

11. Measure coffee

12. Pour coffee into filter

13. Close coffee maker

14. Turn coffee maker on

“Anyway, this is a ‘14 steps to make coffee’ kind of day.” 

Uses:

Daughter: Sounds like you are having at least a 23 steps to make coffee day today
Me: Yeah. Coffee is pretty much not happening today.
Daughter: I don’t think much of anything else is happening either. 

Gravity

I don’t have anything pithy from the internet to post here (yet). Some days, there just seems to be more gravity than others. On those days every movement just takes more. More energy. More drive. More muscle. On high gravity days, I use the handrail to help haul me up the stairs. I notice the effort involved in breathing. In sitting. 

When I have a very high gravity day, several observable things happen.
1. My heartbeat is… loud/hard. It is not pounding, like with strenuous exercise, nor is it fast. I can just hear it and feel it. Like each beat is a harder contraction. 

2. My breathing is shallow. I am very aware of my breath. Each breath feels like an effort. 

3. Although my O2 saturation is fine, my resting heart rate is in the low to mid 50’s. That is normal for very fit adults, but I am far from fit, and it is not normal for me. 

Spoons = energy

Splat = Bad Stuff

Steps to Coffee = executive function

Gravity = effort needed for normal physical function