A couple of days ago my dad asked me if I wanted to go see my beloved Jayhawks this coming Monday. At first I thought great, lets go into planning mode to get limited mobility seating and give it a go. I was then reminded by my calendar that I have two appointments at KU Medical Center 45 minutes away. Understanding and realization swept us both. The appointments would run from 11AM to 4PM. In order to go to the game I would have to be there by 6PM.

That’s two hours of downtime, so what’s the big deal?

I found myself having trouble explaining my day to others earlier on in my diagnosis. I didn’t quite understand it myself so it was difficult to explain, but my energy was just wildly inconsistent.

Fast forward to earlier this year. A new friend from one of my support groups made me aware of something called Spoon Theory. My fiance April even made me a shirt for Christmas in order to help explain. Rather than trying to paraphrase, I’ll just do some lifting from Wikipedia here…

“The spoon theory is an analogy used by some people with a disability and people with chronic illness to describe their everyday living experience when their disability or illness (physical or mental) presents in a reduced amount of energy available for productive tasks. Spoons are an intangible unit of measurement used to track how much energy a person has throughout a given day. Each activity “costs” a certain number of spoons, which will only slowly be replaced as the person “recharges” through rest or other activities that do not require (or even refill) spoons. A person who runs out of spoons loses the ability to do anything other than rest. One of the tenets of the spoon theory is that people with disabilities, chronic illness, or mental ilness must plan their daily activities to conserve their “spoons,” while healthy, able-bodied, and/or neurotypical people have a “never-ending supply of spoons” and thus have never needed to worry about running out. Because healthy people do not feel the impact of spending spoons for mundane tasks such as bathing and getting dressed, they may not realize the amount of energy that chronically ill or disabled people may have to get through the day.

Spoons might be replaced after a night of sleep. However, people with autoimmune diseases can also have sleep disorders, and may have a particularly low supply of energy. Some disabled people may not be fatigued by the disabilities themselves, but by the constant effort required to pass as non-disabled.”

The term was coined by Christine Miserandino, a lupus sufferer who was trying to find a way to describe what her energy was like to a friend.
A line in her article that really hit me involved how the thought of spending spoons permeates life completely from day to day.