A short time ago I suffered the worst patch of chronic fatigue that I have experienced for the longest while. I couldn’t have written this update when it was at it’s worst. Even lifting my head from the sofa was too much like hard work. Trying to eat with the lightest of forks felt like I was trying to lift a bag of sugar.
My limbs felt like dead weights, they shaked and flailed as I tried to perform even the simplest of movements. They trembled like they were sacks of water when I asked them to be still. Every request for my body to move left me panting.
Of all the things that I experience with endometriosis, it is the fatigue that I dread the most. For me it the worst sort of body betrayal. It makes me feel like I am trapped in my own body, weighed down by my own skin and fighting against a perpetual feeling of slipping into unconsciousness.
I have spoken at length about what endometriosis pain feels like. Today I want to talk to you about my chronic illness nightmare. The thing I dread the most. The heavy burden that is chronic fatigue.
How and why I felt bad
I spent three days feeling terrible after overdoing the dancing at a Christmas party. Just three hours of forgetting about illness, letting my careful pacing go had led to me feeling miserable for three whole days.
I didn’t regret the decision to do this at all. In fact I knew it would happen. I had scrimped and saved my energy for days beforehand to give me the briefest window of normality.
However it was still brilliant reminder of why those of us who suffer with chronic fatigue shouldn’t overdo things, and I want to use my most recent experience to explain the despair that is fatigue, to those of you who know it well, and those of you who still use the word “exhaustion” for a busy day, or a hangover, or a couple of hours of missed sleep.
The very worst sensation is a lack of control. Not knowing when this long, dark, heavy fatigue will leave you. In many ways I was extremely lucky to only have three days of exhaustion for a mere three hours of play. That’s a pretty good ratio. I’m not always so fortunate.
The downside of managing
Subsequently I’ve pondered just how I shot myself in the foot with the dancing. Not because of how poorly I felt in the days after, but because my incredibly rare instance of “living without boundaries” had made those I was with think that I was okay, or worse still that I was getting better. That perhaps this chronic illness of mine wasn’t quite as bad as I was making out.
Very few people see someone with chronic fatigue when they are at their worst. You only ever see me when I am at my best. When I am carefully navigating around the small talk of the office, or when I have won the battle with my body to make it out of the house. No one but my nearest and dearest sees me when I am pale with the labour of fatigue, my eyes the merest hint of open. Struggling to talk and to move I am so laden and tired.
When all I can manage are groans, whimpers and shaking hands. Hardly anyone else sees that. Only someone else that has experienced fatigue first hand can know what that feels like. How lost and muddled you feel, your mind racing all the while, begging your body to stay awake.
Judging my chronic illness or my fatigue simply by what you can see is a flawed model at best, like trying to estimate the size of an iceberg when most of it sits silently underwater.
What experiencing fatigue feels like
It’s incredibly difficult to explain how chronic fatigue feels to someone who has not experienced it. Particularly when others’ experience of tiredness relates to time without sleep rather than the dark depths that fatigue creates. I have never experienced drowning, but I’d equate the sensation to that. Willing your body to float as you sink helplessly deeper towards the bottom of an ocean.
By comparison I welcome the normal sort of tiredness. The tiredness that people not burdened by illness complain of. Tiredness that comes from actually using energy, from burning the candles form both ends, from missing sleep (occasionally out of choice). Tiredness that has a purpose, a reason, acts as a warning for when you need to rest. Tiredness that means something, it a result of fun had or energy spent.
I get no choice when it comes to fatigue. It is my master, and it decides how I feel, what I can do and if I will be able to work. No amount of sleep will sate it, no food, no drink. Only patience, pacing and time.