When Chronic Fatigue Syndrome Has No Beginning and No End

Let me begin by saying, this is a very incomplete story with no beginning and no ending. Perhaps it’s not even a story at all.

This is where I will start. In the days following getting sick with chronic fatigue syndrome, most of my memories have been lost, obscured by the thick fog that has occupied my brain space for three years now. I remember less of the “who, what, where” type of memories. (Where was I in the days that followed? Who was I with? Was the weather nice?) I remember more of the bodily feeling as I transitioned overnight from being a healthy teenager, to being indefinitely ill.

One memory that is seemingly insignificant always surfaces to the forefront of my mind when I think about the “beginning” to my story.

I’m 19 years old, and I am at a house party.

Every fiber of my being is screaming that something isn’t right – the crowd around me is moving too fast for my eyes to process, and the ground seems to be shifting underneath me. I have the uneasy sensation that I’m standing on what feels like a turbulent airplane, and lean against the wall for extra support. (To be clear, I am 100 percent sober.)

There’s a throbbing in my temples, and my bones are aching with exhaust – I’ve left the crowd of people to seek refuge in the quiet of the bathroom.

Panic began to rise in my gut. I’ve lived on this earth for 19 years now and I never remembered gravity being quite this heavy before. As I sink to the floor of the bathroom, I notice the bathroom mat. It’s a picture of a toucan holding a margarita, who seems to be mocking me with a huge grin. underneath are the words “It’s 5 o’clock somewhere. Relax.” sprawled in huge cartoonish letters.

I had been feeling “off” for over a week now, but had been to the doctors twice. After running copious amounts of blood work, the doctor had assured me that nothing was wrong, and I was “probably just overly stressed between work and school.”

Maybe the doctor and the bathroom mat toucan were right. I just needed to relax. Could this be all in my head? Could it be some weird manifestation of anxiety presenting itself in a very somatic way?

I dragged myself up from the floor and went back outside to force myself to socialize, despite the internal screaming from my body begging me to stop and rest. The very next day, I was unable to get out of bed at all. Although I’m not a doctor, I had the intuition to sense that there was something far more sinister than just a “little anxiety” going on inside of me.

In the days that followed, I did not return to work or school, and I lived within a strange twilight.

Although June was my favorite month, light had now become unbearable and I was forced to draw the thick blinds over my window. The darkness in my bedroom even during the mid summer afternoon created the illusion that perhaps it was always 5’clock. After all, the days had no beginning and no end. They all kind of melted together into some sort of oozing, colorless, and liquid thing — I was never sure if it was 1 p.m., 5 p.m., Monday, or a Thursday. I guess it didn’t even matter anyway.

When I was able to get out of bed, I was moving in a strange slow motion. It felt as though invisible weight had been shackled to my ankles, and a 100 pound backpack was crushing my upper body in a tight death grip. I constantly felt as though I had just run a complete uphill marathon (while having the flu),yet I’d been walking less than half a mile a day.

That was the first month of my life as a “sick” person – and my last month of thinking of sickness as a self-limiting malady with a clean three part arch of “Struggle, receive treatment, then heal.”

Instead, my life has become learning to live inside the ellipsis. I am essentially hanging in limbo, unable to return to my previous health.

The truth is, there is no ending to this story.

At least, not the one you want to hear. There’s no resolve about how I traveled the far corners of the earth to find a cure, and came back stronger, wiser, and healthier than ever.

That’s not how my story goes. (At least not yet.)

I still live in my own time zone, as do many others with chronic fatigue syndrome. On my bad days I find myself drifting in and out of consciousness. The doctors have no answers for me, and my waking thoughts are mostly occupied by dreaming up elaborate heists to burn this evil fatigue out of my body for good.

See, the beautiful and terrible thing about this story is that there is no ending. Maybe I’ll eventually be able to  overcome my chronic fatigue syndrome, and maybe I won’t. Maybe I’ll always be doomed to live inside my own time zone in which it’s always 5 o’clock, and I feel perpetually frozen and unable to move forward.

But perhaps it’s about learning to live despite knowing that there might not be a clear resolve, and finding meaning anyway. Maybe one day I’ll wake up and realize that it despite everything, I have moved forward and it is no longer 5’oclock.

Getty Image by benjaminjk