I haven’t written in a while. I’ve been…tired. And that’s what I’d like to write about.

Under the systems we have now: time, energy, health - these are all the most important things for survival. We need these things to make money, we need money to survive. If you know me in “real life” (read: synchronous life) then you know the Harriet Beecher Stowe quote I love to recite: “A woman’s health is her capital.” This is true now more than ever.

But I’m here to talk about energy. (Energy and health are obviously interconnected, as most things are with other things in this world, which makes writing about any one thing in isolation from anything else pretty difficult for my pattern-loving brain!)

Energy Budgeting

Our chronic illness and disability friends may describe their daily energy as spoons. I find the term spoons to be confusing for many nondisabled people, so I usually describe it for myself as an energy budget. Budgeting feels more accurate anyway. When I wake up, I have a set amount of energy for the day. Sometimes a mid-day nap might help boost that a bit, but not by much. And if i’m not careful, overdoing it one day can have a lasting impact on my budget for the next few days, weeks, or even months.

With full days of work, I usually run out of energy by the end of the day. My “speech spoons” are some of the first to go. Sometimes I refer to this as being “out of mouthwords.” More on this later.

Energy is something you have, that is then taken from you when you carry out a task. You use it to do something. It’s something your technology and devices have, that is taken from them (or via the electricity outlet in your wall) when you ask them to do something for you. It’s something many disabled people need - in the form of electricity for a ventilator, for instance - that becomes inaccessible during a climate-change-induced storm that wipes out power, that then threatens the life of disabled people who rely on these technologies to support their lives. Energy is needed to heat our homes so we don’t die of cold in a snowstorm.

We have energy in our bodies and energy in our walls. Energy in all its forms is everywhere. Energy poverty threatens lives on numerous levels. Energy - in all its forms - is political.

Energy Poverty

It takes energy to do any task. It takes energy for your body to fight an infection, like covid, the flu, or RSV. Energy is also often permanently taken from you if you develop long covid or MECFS after said infection. If this happens, you have less energy overall, and the energy you do still have is used up more quickly. Even a small task, like wrapping one too many presents before Christmas, can set your recovery back very far.

You can have time taken from you: time poverty. You can have energy taken from you: energy poverty.

Many chronically ill folks, especially folks with MECFS, long covid, or other energy-limiting illness, live in a constant state of energy poverty. This has huge impacts on our lives. Suddenly you can’t work, you can’t help out around the house, you can’t make money, you lose your home, your job, your life. All because of energy.

It’s suspected that some of the folks with long covid or MECFS have something wrong with their mitochondria. To be fair, there are a number of theories about what exactly is going on behind the scenes to produce what we call long covid, and I suspect the final answer is that multiple pathophysiologies (reasons) are at play. But the mitochondria theory makes a lot of sense. If “the powerhouse of the cell” - the thing providing energy to you at a cellular level - is broken…this would inevitably result in the many downstream effects we see - the hundreds of symptoms ranging from mild discomfort to a complete inability to absorb what you eat or drink. If your cells can’t get energy, they can’t do their jobs.

The Impossible “Energy Calculus”

Maybe energy ebbs and flows, as many disability symptoms tend to do. Energy ebbs and flows for nondisabled folks, too. That’s normal. But the reality is that even at the peak of our energy waves, we are still underwater.

Many of us are using our last slivers of energy to participate in activism and advocacy from our beds. We are forced to do an impossible Energy Calculus when we have things that need to get done, or places we need to go: How much energy will it cost to get there? Is it bright out? Is it cold? Will there be a lot of people and noise? Will I need to communicate my needs in a particularly polite and articulate way to accomplish what I need to do? What’s the chance I overdo it? Can I afford to take that chance? What do my next few days look like if I crash?

And thinking through all these potential factors? That also costs energy.

Expensive Speech

This also connects with something I learned recently called expensive speech. I knew that there were different ways to have trouble with verbal speech, ranging from being completely nonspeaking to having some access to speech (insufficient, unreliable, or intermittent speech). Expensive speech was a new one for me, though. Basically, producing speech is a super complex motor task for your brain. It requires coordinating approximately 100 orofacial, laryngeal, pharyngeal, and respiratory muscles! Needless to say, it takes a lot of energy for your brain to coordinate all that! When your body’s battery isn’t charging well to begin with, using that much energy to communicate verbally can be too much to ask. Speech can be expensive for lots of different reasons that I won’t get into right now for fear of making this post too long to hold anyone’s attention. We’ve already talked about energy-limiting illness being one. Another big one: apraxia or dyspraxia from various types of neurodivergence. And really, any chronic illness or disability that makes muscle coordination difficult or causes fatigue probably makes speech expensive sometimes.

I don’t have a good conclusion to this post other than that there are lots of ways to use energy, and lots of ways to lose energy. Save your energy for the important things, and use it well.