Woman with gas tank meter on head referencing fatigue living with MS.

Driving With a Smaller Tank: MS Fatigue

If there is a multiple sclerosis symptom that probably gets talked about the most, I would imagine that it has to be fatigue. That’s purely a guess on my part, but given the impact it has on the day-to-day lives of those with the disease, I’d be willing to bet I’m correct. Those who suffer from MS-related fatigue are always looking for new ways to describe the various ways that it affects us. Our fatigue is not simply being “tired”, so allow me to attempt to explain this by comparing some cars!

Why are we always talking about MS fatigue?

True fatigue from MS can be life-changing and devastating. Its debilitating nature can force people from every aspect of their lives. People lose friends, family, and jobs because of their fatigue. It’s a symptom that traps people in their own bodies. Fatigue’s impact isn’t the only reason it’s so discussed though. I think we are constantly talking about it because it’s a symptom that so few understand.

If you haven’t had MS-related fatigue, it can be nearly impossible to understand what it’s like. Those of us who have experienced it keep trying though. So many of us wish that others could grasp what we are going through. That we aren’t simply tired. That what we experience is vastly different than you being exhausted from too much work or getting too little sleep. Of all of our symptoms, I think fatigue is the one that most non-MS folks think they understand when it’s really the one they understand the least!

What is MS fatigue like?

With all that in mind, I thought I’d try to discuss fatigue again, at least one of the many aspects that most people fail to understand. It’s that there are times when no amount of sleep will help, that my fatigue isn’t really related to my sleep at all. That I still require rest because of my fatigue, but no amount of rest will cure it.

It's impossible to fill gas tank

When I think about this characteristic of fatigue, I think about cars. As in my body is a car, but it’s a car with a much smaller gas tank. In fact, the tank never lets you fill it past the spot that triggers the low gas warning light. Fill it up and that light is still on because your tank just can’t hold enough fuel.

More frequent fill-ups

So then imagine a friend and I both go run errands in our cars (bodies). Well, it takes me longer because I have to keep stopping for gas. Not only do I have to be very aware of where gas stations are, but I also have to be aware of what activities will expend my gas quicker.

Paying attention to efficiency

I need to get the best gas mileage I can possibly get in order to not have to stop so much or even in order to make it to the next gas station. Just as cars get different gas mileage depending on how they are operated (car vs highway driving, is the air conditioner on, is my car tuned up properly), so to do people with MS have to take various triggers into account to maximize the use of their energy (if it’s hot, or I’m stressed, or have to over-exert myself, my body’s fuel won’t get the best mileage).

This or That

Do you think the people around you fully understand MS fatigue?

MS fatigue key takeaways

Thinking of that limited fuel tank analogy, I hope I can illustrate that it’s not only about filling my tank (even when it’s full, my tank can’t hold as much as yours). It’s that I also have to be much more cautious of how I use the energy I have. This means I tend to plan out my days a lot so that I can make the most of them. This means that when things pop up, it can be kind of mess for me. It also means that for me to make the most out of the fuel I have, some activities might be off-limits or have special requirements. As we approach the warmer months, this is especially true because the temperature has such a huge impact on my “gas mileage”.

Thanks so much for reading yet one more description of fatigue! As always, would love to hear about your experiences in the comments below!

Devin

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