What Someone With Chronic Fatigue Does With Their 'Spare Time'

Today was just an average day.

I woke up, exercised, got dressed and went to work. After work I got home, had dinner and went to bed to do it all again the next day. Sounds normal, right? However, if I said to you I only work five hours per day yet still seemingly achieve so little, what would your response be?

“What do you do with all that time?!”

Today was just an average day.

I woke up, took my medication, did my physiotherapy, showered, got dressed, and went to work. After work I came home, had dinner, took more medication and went to bed.

“I wish I had all that time in the morning to do whatever I liked!”

Today was just an average day.

I woke up at 10 a.m. — I slept through my alarm. I couldn’t get to sleep last night as I was in too much pain. I peel myself out from under my sheets and, bleary eyed, swallow eight different pills and three different liquid medications. I run to the bathroom, feeling sick to my stomach, I involuntarily throw up undigested food from the night before. I am in so much pain, so exhausted I wonder how I will survive the day. I pull on my trainers and my workout gear and grit my teeth through physio. Half asleep I climb into the shower, the prolonged standing up nearly makes me pass out. Legs purple from blood pooling, I get out the shower and lie down until the room stops spinning.

I throw on my clothes and attempt to eat something, energy feeling like a distant memory I go to work. I work for five hours, always on my feet, always on the ball, always trying my hardest. Always exhausted. I get back home, fall through the door and slump on the sofa. I manage to climb up the stairs to change out of my work clothes. Head pounding I find something to eat. I then take another 10 pills and climb under my sheets. Head spinning with thoughts from the day I slowly drift into the abyss.

“You’re so lucky! I wish I could have a lie-in!”

Today was just an average day.

I got called lazy, received judgmental looks when I said I was tired after a five-hour shift. I watched bemusement cover people’s faces as they couldn’t fathom why I was so exhausted all the time. I only work for five hours right? The thing is, that is five hours on a normal person’s clock. One waking hour for a person with chronic fatigue takes the equivalent energy as at least four hours does for a healthy person. Imagine working for 20 hours straight with only four hours sleep in between. It is like everything happens in slow motion whilst simultaneously flashing you by. Hours take the energy of days yet what happened two minutes ago is already nothing more than a fuzz in your brain. You feel like you’re constantly on the go and can’t understand where all the time has gone.

“I am tired, too!”

I am not just tired. If you are tired you can sleep a little longer and shake the feeling off. With chronic fatigue I don’t have ability do that. No matter how much you sleep you can’t shake the cloud of exhaustion that covers you every day. You fear for your future, you can barely afford to survive as it is, what if it just gets worse?

Next time you say to someone with chronic fatigue that they are lucky for having so much “spare” time just remember this one thing: We have fought so hard to be able to work in the first place. Please do not belittle our success.

Today was just an average day. 

A day people didn’t understand.

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Thinkstock photo by cyano66