Since being diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ‘tired’ has become one of my most commonly used words. It’s a word we all use. Everyone gets tired, whether it’s at the end if a busy day, or as you drag yourself out of bed early in the morning, we all experience it. But the more I use the word the more I realise that what I mean when I say it, can be very different to what other people mean.
For me it has almost become like a code word, or shorthand, for the millions of other words that I keep trapped in my mouth. It’s as much about what I am not saying as what I’m saying.
To me those six letters are so much more than an adjective. It’s the ache in my muscles that weighs down my body, until it feels almost too bruised and heavy to move. It’s the sadness and guilt I feel when I have to cancel something I really wanted to do. ‘Tired’ is the thing I see when I look in the mirror. It is the paleness of my skin and dark circles round my eyes. ‘Tired’ is the darkness and weariness that sometimes creeps into my spirit, making me wonder how many more days like this I can take.
When I say ‘I’m tired’ I mean that this day will be hard. I will ride the roller coaster of being happy one hour and sad the next, because my emotional regulation has given up and gone home. My head will be filled with a fog so dense that forcing my brain to concentrate feels like a particular kind of torture. I will be irritable and say things I don’t mean, the words I want to say will get mislaid somewhere between my brain and my mouth. I will be endlessly frustrated with myself and my inability to ‘cope better’, when really I am frustrated with the direction my life has taken.
‘Tired’ is the black hole that I am being perpetually pulled in to. The opponent I have to fight, who has a fondness for changing the rules of the game when they feel like it. It haunts my good days and my bad days. It is the monster that I will sometimes let you catch a glimpse of, but will mostly keep hidden away. Some days I worry it is all I am and ever will be.
But whilst ‘tired’ is more than a word to me, I am more than those five letters.
I believe have a value that comes not from what I do or how I feel, but from who I am. I have no less worth on the days when I can’t get out of bed than on the days where I can pretend all is well. I am a daughter, a sister, a friend, and I am loved. I am creative, clever, empathetic, thoughtful and strong. I am so many other things before ‘tired’. There will be days when I will need reminding of that fact.
I may be tired today but I refuse to give up on the hope that tomorrow will be better. Maybe one day there will come a day when energy is no longer a distant memory.
In the mean time I still have dreams to chase and I’m not done yet.