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When Being ‘Tired’ Turns Into Fatigue After Encephalitis

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Until two years ago, I’ve lived my life thinking that I had a pretty good idea of what being tired meant. Being tired was associated with a big week at work, a late night out, a big workout, a bad night sleep, dealing with a stressful event and so on. Being tired was basically a normal physical response when I had put my body under the pump. A bit of quiet time, a bit of extra rest and sleep, a few minor changes in lifestyle and I’d usually bounce back pretty quickly and get back to my usual levels of energy. But what happens when being tired turns into fatigue?

I’ve thought long and hard about some sort of analogy that would draw an accurate picture of what the term fatigue now means for me. Since encephalitis (“e”) and its resulting brain injury, we have often use the whole energy tank comparison, where you start your day on a full tank, mine may only be half full…therefore, I have to choose where I’ll be investing my energy, since there will be a point where I will most likely run out of energy. From there, I thought that the whole car analogy could work quite well with the point that I am trying to put across.

What happens if you constantly run your car on an empty tank? Well, you may be able to make it to your destination (or the gas station) most days, but your chances of running out of fuel are also much greater than someone who is accustomed to run their car on a full tank, right? If you’ve run out of fuel while driving before, you know first-hand what happens when the last drop is used. Your car pretty much goes in lock down mode and after a few 100 meters, it will come to quite an abrupt stop. Your car won’t keep moving forward because you so badly want to reach the next gas station,right? You might even see the petrol station 500 meters ahead, but that won’t get your car to it…well, not without spending a huge amount of physical effort to get there anyway.

It’s a bit the same for me when my brain runs out of energy. Things start to shut down — sometimes gradually, and sometimes pretty abruptly. One minute I might interact in a somewhat “normal” manner, and the next, whoosh — things start to crumble one by one right in front of my eyes. Just like a car, my brain may give me warnings signs alerting me to the fact that my fuel light has now lit up, that my fuel is running low and that a pit stop will soon be required or else shut down mode will occur. Other times, it will go from 100 miles an hour to zero in a split second, as if the fuel tank was punctured and the fuel is now gushing out on the ground. The speed at which things start to crumble is usually determined by my initial state of fatigue, the time of the day and the environment where I find myself at when shut down mode kicks in. If I’m at a place with lots of people and noise, my brain has to work extra hard to process all the stimuli, so even with a full tank the brain energy will drain out pretty quickly…like a car, the faster you go, the more fuel you use and the faster your gauge will start leaning towards “E.”

If your car runs out of gas, you generally have a couple of options available to you. You may be able to walk to the nearest gas station, borrow a fuel canister to refill your car or you may have to call a friend/family/roadside assistance to come and help you out. You will eventually refill your car one way or another and off you’ll go again. You may get to your destination a bit late, have a bit of explaining to do, but generally that’s as bad as things will get.

That’s where the brain/car analogy stops, unfortunately. The impact of a brain shutting down can be quite devastating and can include various effects. Your body may stop responding as it should and do lots of unusual things: loss of coordination, shaky hands, foggy brain, heart rate ramping up and down randomly, vision going blurry, speech slurring, feeling nauseous, struggling to control your body temperature, headache and hypersensitivity to noise or light, only to name a few. From here on, you may get very confused, you may stop being able to make sense of what’s happening around you, and you may get very emotional from losing all control over you body. You are aware of what’s happening, you experience every second of it, but not much can be done to slow or stop you from going down the slippery slope apart from seeking quiet place and resting. Unlike a car, you may not be able to hit the road again so quickly either. It may take days/weeks for you to replenish your energy tank sufficiently to recover enough to operate “normally”…or to whatever your new normal might be.

I now know that fatigue is very different from being tired, or normal levels of fatigue that we all experience from time to time. Fatigue is physical and mental exhaustion that is hard to shake off, even with huge amount of sleep. Fatigue is that awful, awful feeling of emptiness right in the middle of your chest. Fatigue is struggling to get out and about your usual life in spite of all the motivation/good intention in the world. Fatigue is feeling like your body is stuck in that of someone older than you. Fatigue is like having to run a marathon going up and down a mountain range…in knee deep mud. You eventually see the finish line in the distance, but will no doubt need the help and encouragement of those you love the most to get through the 26.2 miles and to cross the finish line.

Lucky me, I love to run and I have never been one to choose the easy road, so I know I will always find that little bit of extra motivation and determination to try to bounce back, to implement the right fatigue management measures to eventually win the battle over a set back and fatigue. Does it still suck? Absolutely. Do I still feel quite misunderstood by most people surrounding me? Absolutely. But I hope that I keep trying to be the best I can be, that I manage to offer my loved ones the best that I have to offer on any given day.

Women sitting on a big rock by the ocean

Follow this journey on the author’s blog.

A version of this story originally appeared on the author’s blog.

Photo by Timur Romanov via Unsplash.
Originally published: March 24, 2020
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