Fatigue in chronic illness explained

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 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.

invisible-illness-fatigue

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 spend the whole 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%.

I open my eyes, get out of bed and get dressed.

My phone battery is now at 40%, I did not even have breakfast yet.

empty-battery

Breakfast and starting the day

I prepare some food and eat my breakfast, 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.

This takes up the rest of my battery. I am at 1% and is not even lunch time yet.

Lunch/naptime

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.

After 2 hours I wake back up, first not realizing where I am or what time it is. When I get back to reality I do feel a little recharged.

My battery is now at 20% this is all I have left to use for the rest of day.

fatigue-in-chronic-illness-explained-1

Rest of the day

I get up – 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.

I still have 3 hours left in my day before I can go to sleep again. I am literally running on an empty battery.

Finally it is time to go to bed, I am exhausted. I totally overdid it today and insomnia kicks in.

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 bedrest 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.

This is a fantastic article written by Natalie van Scheltinga http://spooniesforlife.com/whats-wrong-with-me/

Although I went to bed last night and fell asleep by 10:30 PM after reading (a must in order to fall asleep for me), I had my typical toss and turn night and woke up having to hit snooze on my alarm for 2 hours, dragged myself out of bed to make coffee, then moved to the couch to rest for the morning. I have to study for my Pathology exam tomorrow, however, my brain isn’t awake enough yet (it’s not just my body that suffers) to study, so I’m waiting for that to happen! On top of the fatigue, my entire body is aching, and I’m experiencing severe pain in my hips (from my soccer tendonitis injury) and my back (from the scoliosis and fibromyalgia). Let me tell you, it is fun times! However, I will continue to smile and press on because I have SO MUCH to be thankful for in my life – amazing family, friends, school, a new career I’m passionate about, my hobbies, etc. 🙂

To all of my fellow “spoonies”, I hope you enjoy your Monday!

Xoxo Lex

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4 thoughts on “Fatigue in chronic illness explained

  1. You nailed it, Lex! In my opinion, the fatigue is the worst part of the fight. I have many days when the pain is minimal or even nonexistent but the fatigue still ruins my plans 😦
    It is also VERY difficult to explain to “normal” friends and family why ONE day of activity knocks us out for THREE days. I often (half jokingly) say that I can only do something/anything for “one day in a row”. Oh, I miss the days when I could go, go, go for days on end. I miss the feeling of accomplishment… cleaning the entire house… doing ALL the laundry and grocery shopping and running ALL the errands at once. For now, I set one goal for each day. Sometimes it’s small, sometimes a bit bigger. It depends on my battery charge 🙂
    You are not alone, Lex! Fight On!!

    Liked by 1 person

    • Thank you for understanding, it is readers and real people like you who keep me going! The “healthy” will never truly understand, no matter how much they see it or you try to explain it. I was diagnosed in grade 7 20 years ago, so all I remember is running around pain and fatigue free as a child, and then at puberty everything changed. Wish this life could have been different, but they were the cards I was dealt. Trying to do something good with what I’ve got, but some days it’s harder than others! The fatigue is definitely awful, and gets worse as the years go on. Hang in there my dear. xo

      Liked by 1 person

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