You can not see I am ill. From the outside I look fine.
I want to explain the fatigue that comes with being chronically ill.
Fatigue in chronic illness explained aka “The Battery Analogy”
Watch fatigue in chronic illness explained in video format. The article has been updated after the making of this video. Read the entire article for the most up to date version.
Fatigue is not like being tired. When you are tired you simply take a nap and feel recharged when you wake up.
I do not feel recharged when I wake up from a full nights sleep (if I manage to get a full night at all) let alone feel recharged after a nap.
Waking up
Let me explain:
My energy levels are like a phone battery that does not charge properly. I can sleep a whole night and still feel like I spent the entire night being wide awake. Imagine your phone not charging properly. The connection between the charger and the battery keeps breaking up. You have your phone connected to the charger all night long, but upon waking you find that your phone only charged 50%.
This is how it is for me:
There are good days and bad day’s. Let’s say I am having a very good day.
I have had a solid 8 hours of sleep and I have just woken up. I start the day with half a battery – 50%. (Mind you this rarely happens, most days it’s more like 30%, the daily charge varies greatly.)
I open my eyes, my muscles are stiff and painful. I try to wake up for about 30 minutes, but just lay there in limbo. Not able to move yet. Finally I get my body to do what I want, get out of bed and get dressed.
My phone battery is now at 40%, I did not even have breakfast yet.
Breakfast and starting the day
I prepare some food and eat my breakfast, I have 35% left.
Now it is time to start the day: take the kids to school, go to work, do housework, whatever I need to do today. Let’s assume it’s a low pain day and my energy lasts for a while. Because when my pain is high, my charge depletes much faster. Everything I do simply costs me more energy. Not to mention the difficulty my brain has to perform the simplest tasks!
My brain feels like it’s in a constant state of thick mist, at times I can’t remember the simplest words. I walk into rooms forgetting what I was supposed to do and everything just goes so slow. The worse my fatigue, the worse my brain fog.
I have done my daily tasks to the best of my abilities, whether it is caring for kids, doing housework or going to an actual job. This takes up the rest of my battery. I am at 1% and is not even lunch time yet.
Lunch/naptime
Personally I am very lucky, I work from home and can take naps whenever I need them. Unless I have a scheduled call or have to do something outside. Let’s say I am able to take a nap to “recharge”. Many chronic illness fighters are not able to take a nap during the day because they are working or taking care of their children or doing other things preventing them to take a nap. But let’s say it is a good day and you are able to take a nap like me.
A nap takes a while. Just sleeping for 30 minutes won’t help me at all. I nap for 2 hours. At first I don’t realize where I am or what time it is, when I wake up. It takes a little time for me to get back to reality/ But when I do I feel a little recharged.
My battery is now at 20% this is all I have left to use for the rest of day.
Rest of the day
I get up from my nap – 15% energy left
I do some work or housework – 10% energy left
I start to cook dinner, but before I am finished my battery is empty again. My whole body hurts and I can’t stand up straight anymore. I still have 3 hours left in my day before I can go to sleep again, I want to cry. I am literally running on an empty battery.
Finally it is time to go to bed, I am exhausted. I totally overdid it today but now insomnia kicks in, and I stare at the ceiling for half the night.
The next day is not such a good day. I wake up with 30% battery…
Life while being fatigued
This is how life for someone with a chronic illness is on a daily basis. You can have days where you wake up with the battery charged for 70% and you can have days that upon waking you feel like you only have 20% for that day.
Overdoing it one day will take away your energy for the next day. The other way around works too, although to a much less extent. If you know you have a big day coming up and you need energy, you can rest beforehand and make sure you are as charged as you can possibly get before starting your big day. With resting I mean having 2 or 3 complete bed rest days to try and hamster up enough energy to get through the big day ahead. Sleeping for an hour or two do not help at all.
Pain is another factor, when my pain is high my battery depletes much faster. I may wake up with 50%, but because of my high pain that energy is gone within the hour.
This is the most basic and simple explanation though. There are many factors that deplete your charge that I haven’t even touched upon, like socialising or just having to talk to other people, stress, doctor visits (or getting ready and going anywhere basically), trying to learn something new, the weather, hormones and many more.
Feel free to share the battery analogy meme to raise awareness for the fatigue that comes along with being chronically ill.
This article is written by Natalie van Scheltinga, the founder of The Unchargeables. Read her story here.
Her dream for The Unchargeables is to reach every single chronically ill person on the planet and make them know that they are not alone. That they do not have to carry this burden by themselves. We are here to support each other.
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