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.
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.
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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11 Replies to “Fatigue in chronic illness explained”
I was diagnosed with Fibro, Rheumetoid and Sarcoidosis. I also have bi-lateral kidney disease. I was in pain all day and exhausted for years. My inflammation markers are off the chart and my body doesn’t heal do to this. My lumbar discs in my back are bulging. The doctors put me on plaquenil and 800 Ibuprofen 4 times a day. I went gluten free 5 weeks ago and just started paleo. I am off the ibuprofen and the plaquenil and my inflammation in my back is finally starting to lessen. My therapist cannot believe the difference. I also lost 24 lbs. I am still exhausted– but even that is getting better as I have a lot of midday energy. I started Yoga yesterday. The food we eat is what keeps us in a state of illness. It might not work for all, but clean out your body for 30 days and see. Recipes free on pintereat, research Paleo. (Paleo is gluten free, chemical free eating) Great bread at wellness bakeries online too. I will get my inflammation markers drawn again after 3 months to see the difference.
Yeah I have noticed a big difference sine going sugarfree and gluten free. Am meaning to write an article about that too! It is very diferent for all of us, different foods cause different reactions. Anyway I am happy that changing your diet worked for you!
Me too. It is a shame doctors do not even attempt to help people in this way. It was never suggested to me, just more medications. I hope it continues to get better. Yoga yesterday was great. Im not saying it is easy to drastically change the way you eat, but worth trying for 21 days.
I have been sugarfree for over 2 years now. The big very painful inflammations I got in my muscles and joints all the time went away after a while. Now it is very mild compared to what it was.
Gluten free I am doing since 6 months, starting to notice a small increase in energy and less intense migraines. But it can still be much much better.
Since a week I stopped eating nightshades because apperently that is also bad for me. Am not sure if it helps yet.
Ugh, that sucks so bad. I have a friend with CFS and it has stopped her from doing a ton of the things she would like to do with her life. She has managed to dramatically improve her energy level via a plant-based, low fat, high carbohydrate diet and a regular exercise schedule, however, she will never be CFS free. I truly admire her. There are no miracle cures, yet she does everything she can, including researching her own genome to find triggers for her disease.
Thank you for writing this . It helps me explain to people what I go through having Small Fiber Neuropathy. To have an article about it makes it more real for them instead of it being “all in my head”. Thanks again!
Having a disc tear in my back and a frozen shoulder since October last year which was operated on in January and failed. I find this is my life every single day. It’s been so bad I wake with pain every 2-3 hours through the night and have got to yhe point I have now had to give up work. Having a second operation on my shoulder next month hope this works. I am over pain as nd having no energy.
I was diagnosed with Stg 4 Glucagonoma Pancreatic Neuroendocrine Cancer in 2011. I receive hormone/chemo injections every 4 weeks, and will until I pass. Besides the cancer kicking my butt, the monthly injections double the fatigue. No one understands this except the people that live with this daily. Great article, thank you.
What a great way to explain chronic illness fatigue!!!!
Thank you so much!!!