Do you ever stop to just look around and marvel at the people around you and wonder how they accomplish so much in a day? I am not just talking about the extraordinary accomplishments of humanity either. It’s the seemingly mundane tasks of daily life which leave me most impressed. Those which in a past life I may have almost certainly taken for granted. Simple things like taking a shower, mowing the lawn, exercising, or going to work. All while somehow also maintaining social and familial responsibilities. Where do they find the spoons?

Thinking back to my younger years, especially post high school, I was working two jobs while also freelancing as a web designer at a local small business, building my own online brand (with relative success) and going to college full time. If that wasn’t enough, I also found the time to date and engage in various social activities. I honestly have no idea when I slept.

I realize that most who read this likely won’t have the faintest clue what I am on about. Yes, young people can party all night and work all day – so what? We are all tired all the time, right?

Having chronic fatigue is different and hard to describe. It’s not that those of us who suffer from it are merely tired or exhausted and in need of a nap. In fact, it has little to nothing to do with sleep at all.

I often tell people how exhausted I feel, only to realize that to them it means something quite different. Again, we are all exhausted, right? When I am fatigued, my body can feel weak, or heavy, like my limbs are filled with cement. It becomes increasingly difficult to move, to do things. Something as simple as taking a shower or making the bed can be challenging and often thoroughly exhausting. It’s not uncommon for me to lay down after taking a shower, because I am just so done.

My hypothesis is that my body is so busy fighting itself that there simply isn’t any energy left for other things.

In the disability and chronic illness communities you’ll often hear of people referring to themselves as “Spoonies”. This term is a reference to Spoon Theory. An idea coined by Christine Miserandino in an attempt to explain her condition in simple terms to a friend, using spoons as a measure of energy.

Every person has n number of spoons per day. This number can vary day to day, and they aren’t equally distributed between people either. You might have fifteen spoons, whereas I might have just 11 or 8.

Everything you do costs energy. Taking a shower might cost you two spoons, getting dressed 0.5 spoons, driving to work one spoon, and so on and so forth. Assuming you have just ten spoons for the day, you can see how quickly you are running out.

The thing people with chronic fatigue tend to have in common is that our spoons are not only limited, but also not easily replenished. A healthy person might be able to rest for a moment or take a nap to regain some of the spent energy, unfortunately, this does not work for many with chronic conditions. This means that we must carefully plan out our day to decide what we spend our energy on.

For instance, if you were to ask me to attend an event on Saturday afternoon, I would need to allocate spoons accordingly. If I were to go on a big hike that morning, I might not have any spoons left to attend your event in the afternoon, thus I need to plan to ensure I’ll have sufficient spoons for the event.

The issue I have found is that it is exceedingly difficult to figure out how many spoons I have on a particular day. I might have eight spoons today, twelve tomorrow, and just five the day after. It’s unpredictable and quite easy to over allocate.

If I wake up tomorrow and I feel good, I might go on that hike and work on some projects around the house, before hitting a wall and crashing halfway through the day. Once I am out of spoons, I am done.

While it is sometimes possible to push through and keep going, I find it to be a bit like taking out a payday loan. Borrowing spoons might be great in the short term, but they are always paid back with interest.

On the one hand I feel like I need to do what I can when I can. Just because I have MS doesn’t mean that life stops, and I want to live my life to the fullest. But on the other hand, I know that I am going to pay for it, if I overdo it. It’s a bit of a conundrum that I still haven’t found a perfect balance to. How do I know how much is to much?

I guess what I hope, if nothing else, is for anyone reading this to understand that people with chronic conditions often don’t have a choice in how much they can accomplish in a day. If I were to tell you that I simply don’t have the energy to do something, please understand that I am genuinely out of spoons and feel frustrated for falling short. Pressuring me won’t give me more spoons, and tasks you think are “just” so easy likely are more challenging for me than you think.

Attributions:

Featured image provided by Nataliya Vaitkevich.