Until 3 1/2 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 ie. 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, as comes 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 petrol station) most days, but your chances of running out of fuel are also much greater than someone who is accustomed to run his 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 metres, it will come to quite an abrupt stop. Your car won’t keep moving forward because you so badly want to reach the next petrol station right? You might even see the petrol station 500 metres ahead, but that won’t get your car to it....well not without spending a huge amount of physical effort to get there anyway.
Well it’s a bit the same for me when my weird wonderful 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 km/h to 0 km/h 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, the 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.
Another example is if you head out on a desert road, you’ll probably chose to put a canister full of petrol in your boot to make sure that you have a back up plan should you run out of fuel along the way. It’s a bit the same when chronic fatigue is part of your daily life. You have to plan your days always allowing for a little reserve of energy in case the unforeseen cramps in. Let’s make things clear though, a reserve is called a reserve for a legitimate reason. It is only to be used in case of emergency as once you start tipping into that reserve, this is energy that is taken away from tomorrow’s usual allowed amount. Once you use the fuel canister stored in your boot, it doesn’t replenish automatically does it? Well it’s the same with fatigue. Once you tip into your reserve, you’ll either have to tweak the rest of your day to consume less energy, get additional rest/sleep to recharge or if neither are possible, you simply have to accept that tomorrow’s energy tank may only be a quarter full instead of half full to start with. Tipping into your reserve can have a huge flow-on effect.
To further feed the car analogy, say that your car is undergoing repair...well I think it is safe to say that it will no longer be available for you to use for a certain period of time. As a result, you may need to catch a ride with someone to get you places. Well when energy is limited, you may also have to rely on other people to get you through a day. Sometime just a little, sometimes more heavily, it all depends on how good you’ve been at keeping up with your fatigue management plan. Relying on other people isn’t always easy, particularly when you are used to be your independent self. That being said, you soon realise that sometimes you gotta do what you gotta do to get you to where you need to be until you car is in operating mode again.
When you deal with chronic fatigue, choosing where and when to use your energy ALWAYS comes at a premium. To put it simply, you make choices based on what will bring you joy. Not everyone has the luxury to run their car on premium fuel, but if you chose to do so you’ll do it because you are trying to do what’s best for your engine right? I guess what I’m trying to say here is that no decisions are made blindly with chronic fatigue. When I plan to spend time with people that are dear to me, it most inevitably comes at a cost to me. It’s a cost that I’m willing to waiver but knowing that the quality time spent with a dear one is equally appreciated by both parties is a must. Once I start getting the vibe that the balance is off, I may try a few more times to make sure that my own perception isn’t biased, but eventually I’ll have to make decisions based on self care and maintaining my already fragile well-being. It’s rarely a win-win situation but the people who truly understands that the quality time spent together comes at a premium will eventually step up.
If your car runs out of petrol you generally have a couple of options available to you. You may be able to walk to the nearest petrol 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 weird and wonderful things e.g.: 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 to only 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 baseline 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 40 year old body is stuck in that of an elderly person (no offense to older readers here). 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 though the 42.2km 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.
Everyone is different, but check out the following blog which provides some tips on fatigue management.
Read about the spoon theory which is another way to explain fatigue.
#Encephalitis #Encephalitissurvivor #encephalitisrecovery #encephalitisawareness #fatiguemanagement #fatigue #braininjury #emptytank #chronicfatigue
In one of my next blog I’d love to talk about how people from your entourage can help you get through a bad fatigue flare and minimise risks of generating one...watch this space!