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

Care and Feeding of Authors

 

So you know an author and you would like to help them be the amazing success you know they want to be. (too much? Yeah. I thought so.)

Seriously, though. If you want to support an author, there are several very real things you can do to help.

1. Buy their book
   This seems obvious, right? Here's the thing, though. Amazon has a set of super-secret magic rites algorithms that determine how many people will actually see the book. Sales are a part of that magic whatsit. If a new author's friends and family don't buy the book, nobody else is likely to even know it exists.

2. Read the book
   I know. We're asking a lot. But you can't do the next, super-important steps if you don't read it.

3. Leave a review
   Leaving honest reviews on Amazon and Goodreads not only appease the magic algorithm gods so more people will see the book, it also lets people who DO see it decide if this is the kind of book they would like. It does NOT have to be five stars. Just give it the number of stars you truly think it deserves and leave a few words about why you gave it that rating. A detailed review about what the book is about is even better, but any review at all helps.

4. Recommend
   If you like the book, tell your friends, family, or co-workers who you know read, and would like, that kind of book. Post it to your social media. Suggest it to your book club and local library.

5. Organize
   Book signings help get more readers. So does getting the book into independent bookstores. Unfortunately, being good at writing books, does not necessarily make one good at organizing events. Some authors may be. This one is not.

6. Tell me I'm pretty
   Not me, personally, but our books. Authors are made almost entirely of anxiety, self-doubt, and impostor syndrome. Telling them you like their book, especially if you mention something specific you like, helps. A lot.

7. Snacks

   Okay, this isn't specifically for authors. This may be just a me thing. People giving me snacks always makes me feel loved and appreciated.

Thank you for coming to my TED talk.
Author friends, please comment with anything I may have missed.

Confessions of the Squat Challenged

I have a confession to make. I pee my pants.

I'm not talking about the the dribbles us older women are prone to when we cough or belly laugh. I am a woman who cannot squat in the woods properly. I like to think of myself as an outdoorsy woman, but I worry this failing kicks me out of the running for truly outdoorsy. Sure, I get my own firewood and Christmas trees. I hike and camp and forage for wild berries. I ride ATVs and snowmobiles through our magnificent mountains. But when it comes time to tinkle without a toilet, I pee on my pants every time. 

I've tried everything I can think of. I've changed my stance and the angle of my pelvis. I've worked on stretching out tight hamstrings and done thousand of squats. I've leaned forward and backward and against trees and logs. Once I even tried just removing my jeans and undies completely. Let me tell you that explaining wet spots on the jeans and a certain aroma is much less awkward than explaining standing alone in the forest wearing nothing but socks and shoes from the waist down. It didn't help much anyway. I peed on my socks. 

I'm embarrassed by my condition. I don't talk about it. My friends have no idea why I always camp in established campgrounds with fire rings and picnic tables... and outhouses. Their impression that I'm a soft city girl grows when I opt for very short hikes and frequent picnic breaks when foraging. In established picnic areas of course. My husband knows of my weakness. I'm sure my mother and daughters know too. They all piddle properly in the wild, but they never mock my lack. Recently I finished my business and triumphantly announced to my husband that I peed without getting any on my pants. 

“That's great. I'm happy for you” he said, then went back to chucking blocks of firewood into the back of our truck. 

Soon a breeze came up and I felt a cold spot on the back of my right knee, and two on my left inner thigh. I stopped and craned around to look, then my shoulders slumped. 

“I guess I didn't actually manage not to pee my pants,” I said.

“I know. I saw,” my husband replied.

“Why didn't you say anything?”

“You just seemed so happy. I didn't want to take that away from you.”

He helped me to see that my piddling problem actually made me more of an outdoors-woman, rather than less. Even though I know I will face embarrassment, a mess, and a feeling of failure, I am still out there running a chainsaw, finding the best berry patches, exploring new trails, and experiencing the best our mountains and valleys have to offer. 

I can be properly outdoorsy. All I have to do is buy a she-wee that fits in my backpack and I'll stop peeing my pants.

Driving With Bees

“Oh no! How are the bees getting out?” Hubby says as he drives up the hill toward our house.

I twist in my seat to look at the hive body we have nestled in the back seat of our extended cab pickup. Sure enough there are bees flying around in the cab with us. As I watch another one crawls out from under the cardboard lid. Damn. I Get up on my knees, butt facing the windshield and try to figure out how to close their escape route without squishing any bees. Most people, when faced with sharing the inside of a vehicle with agitated bees, would not be focusing on how NOT to harm the bees. We are not most people. We are beginner beekeepers and these bees represent hope for our dying hive.

Another bee squeezes out as I watch. As soon as she takes flight I gently press down on the escape spot, praying there isn't another one between the cardboard and wood. There is no resistance, no feel of squishing bug body. I switch to praying nobody I know sees me riding butt-first up the road. Our pickup with it's beat up body and tall, rattly wood racks is distinctive and the butt, now prominently displayed, is not small.

Big Red is instantly recognizable

We arrive home with no further incident. Now we are faced with how to capture all the bees without hurting them before we open a door. Every new little worker bee is a precious gift and we don't want to lose a singe one.

It's the end of June and we've lost our queen. We didn't realize it until it was too late. Now we have a hive with no eggs and no brood. We lost most of our hive over the winter to condensation in the hive so our numbers were already low. Now most of the few remaining bees are drones so we don't have enough workers to create a new queen from an egg or care for her once she hatches. The drones have been eating what honey stores there are because apparently drones are pigs if there aren't enough workers to keep them in line. Our go-to bee guy has lost multiple queens this spring and doesn't have anything to spare us. He tells us our only hope to keep this hive alive is buy a frame of brood with workers on it from another beekeeper and hope they can make a queen.

Empty brood frame

They tried to make a queen but failed

I put out a cry for help on our local facebook classifieds group. A first-year beekeeper with three hives responded and offered to give us what we needed for free, but he needs us there between 5:30 and 6:00 today. We rush home after our last customer leaves. Hubby quickly rigs up a bottom and lid for our unused second hive body out of cardboard so we will have a place to put the new frame. Then we drive ten miles to meet our bearded angel and his beautiful healthy hive.

That, my friends, is how my husband and I found ourselves doing weird gymnastics in the cab of our truck, trying to coax bees onto leftover fast food napkins and transferring them to an empty juice container. We finally catch every one of the thirteen escaped bees and carry the buzzing hive body into the house where the bees will sit until they calm down. It's the same corner we used to stick the children in when they needed to calm down. The bees don't cry or talk back, so it's a step up in my mind.  

By now I'm late for my writers' group meeting and haven't had dinner. In the rush, I've left my vehicle at work so Big Red is the only vehicle available. We decide to drive through Burger King then have hubby dropping me off at the meeting. We hurry back out only to find that in all the gymnastics of bee catching someone has managed to bump the lock button and the keys are still hanging in the ignition.

The only advice I can scrape together from this incident is: If you're afraid your life has gotten too boring, get a hive of bees.

The Red Horse Demon and I

It has finally warmed up enough to til the garden. I asked Husband of Handiness to make sure the tiller ran. In our relationship it is his job to fix and maintain anything with a motor and it it my job to take care of anything that pertains to computers or the internet or children with emotions. He fiddled with it a bit then made a single pass in the garden.

"Ok, it's all yours," he said. "I'm going to go help a friend with a project. I'll be back later."

I knew then that the tiller and I were going to have problems. It behaves reasonably well for him, but it lives to torment me. I think it is still angry about the time I lost control and ran it into a cinder-block wall and ripped its muffler off.

I made it three feet before it died the first time. I fiddled with all the levers and knobs my husband says need to be fiddled with. I swore. I finally got it re-started and made it another three feet. I swore louder and more colorfully. We danced this dance, the demon tiller and I, around the perimeter of the garden. Finally it refused to start regardless of the creativity of my lever fiddling and swearing. I retreated to the house for a sulk and a large bowl of defeat ice cream.

A few hours later my husband returned and started the tiller with ease and tilled the entire garden for me. It never died once.

I am grateful for his help but for the sake of my waistline and blood pressure it might be time for a new tiller.

Brand New Bees

We got our bees today! 

We took our bottom hive box to the local beekeeper 2 weeks ago. Saturday he called to say they were ready. We set an appointment for 6:30 Monday morning. Apparently it's important to move them early in the morning while it's still too cool for them to be active. Getting up early on my day off is not something I would do for just anybody. My new fuzzy, buzzy friends are apparently on the list.

We arrived on time and were directed around to a little lot where several new hives awaited pickup.  Husband of Handiness asked the woman who greeted us if it would be a problem that the spot he had readied for the hive currently had a lot of wasps swarming the tree. She wasn’t sure but thought maybe we shouldn’t put it there, just to be sure.  She told us to put the hive where we felt it would be safe, close to where it would eventually be, pull the screen away from the opening and run.

We drove the bees to Sister-In-Law’s property and selected a temporary spot not too far from where they will live once the wasps are gone. I put on my brand new bee suit with its attached hood and long gloves. I was ready. No running from the bees for this lady!

My super stylin' new outfit

 Husband of Handiness selected a spot he felt would be safe from both wasps and mice. He lugged the hive over and settled it carefully in its new spot. I readied to pull the screen away. We paused for him to take a picture and the tension mounted. Finally it was time. I pulled the screen away and…

Nothing much happened. Four or five bees crawled out the opening and wandered around like they could really use a cup of coffee. A couple minutes later a few more bees came out and took to the air. They buzzed about drunkenly for a bit then went back in the hive. A dead bee lay in the entrance. Another one clung motionless to the window screen. I prodded at it a bit but it didn’t respond.

Husband of Handiness doing the heavy lifting

Prodding and unresponsive bee

Oh no, my brain screamed. You’ve had these bees less than an hour and you’ve killed them!   
 

Husband of Handiness reminded me that bees are not active when it's cold and that it was still just over 50 degrees. He suggested we go home and make them up some sugar syrup to help them out. 

I made up the syrup, (one part water to one part sugar, heated until completely liquid) and Husband of Handiness cut and bent some window screen so they could get to their emergency food without drowning in it. 

Making emergency bee food
(also known as simple syrup)

Letting the bee food cool

I suited up again and we drove back to the hive. 

The lid was already glued down. Obviously these bees had been busy. Husband of Handiness pried it off as I ran the camera. Taking pictures with leather gloves on was just as difficult and frustrating as I had anticipated. Once the lid was off I discovered that the bees were alive and active and generally didn’t give a hoot about us or what we were doing.

 

Lifting the lid for the first time

Feeding the non-scary bees

Seriously, these are some super chill bees. If I moved too fast a few of them would fly up and buzz around a bit. Other than that they seemed wholly unconcerned about the fact that we had just ripped the roof off their home and were messing around, pouring stuff into the feeder. I ended up taking off a glove to make taking pictures easier. I don’t know how it will be in the future, but today we didn’t seem to be in any danger of getting stung. The bees were too busy to bother with the likes of us.

I left my bees knowing they are alive and busy. I will probably be bothering them more than I should in the next few weeks. I love my new fuzzy, buzzy, and surprising friendly friends. 

At the Bakery ready to write about my experience