THE RELENTLESSNESS OF CHRONIC FATIGUE: WHY WE ARE BRAVE TO KEEP RESTING

Photo: Amani Omejer

Photo: Amani Omejer

For the last 10 years, I have had something intense going on with my body: injuries, viruses, infections, extreme fatigue, severe pain, etc.

I’ve received the diagnoses of Post-Viral Fatigue and Chronic Fatigue on various occasions, but I believe these to be labels for lots of different things all going on at once.

I’ve been lying here trying to find words to describe my experience, but doing so is really fucking difficult. Instead, I wish I could give someone a day in the body of Amani token when they ask me what I feel like every day. Or let friends step into a Symptoms Simulator when they ask me how I am in that moment.

But unfortunately neither of those things exists, so using words it is.

It is shit. Really shit. There are benefits, of course there are — increased sensitivity in my body, for example. I am so much more aware of my body’s needs and reactions to things than ever before, and only seem to get more so.

But fuck the benefits right now — I wanna look at and voice what is hard, what is relentless, what drains me every day, and leaves me wondering whether I want to be alive if this is what is happening in my body and mind constantly.

On days/weeks like this, finding the positives, feeling the empowerment and self-connection that comes from it, feels like bullshit. And sometimes, it is. All I can see is overwhelm, pain, exhaustion, and fear. So much fear.

And I believe in the therapeutic power of ranting, moaning, and indulging in feeling sorry for yourself when something is difficult — when I do, the feelings pass. When I don’t, and desperately try to be alright or positive, they linger, and trip me up or kick me sideways, leaving me ass-over-tit.

It is a minefield. A hotpot of symptoms, with my body being the bread that’s dunked in it. Mine changes daily, hourly, and often on a momentary basis. One minute I will have energy, the next my muscles have completely emptied. Or the other way round.

There are the usual characters of fatigue, pain, and fogginess, along with other regular symptoms. They each have their usual spots they linger or ways they show up in my system, but even these familiar characters vary in their disguises, intensities, and locations.

Fatigue, pain, and fogginess, have become blanket terms for some feelings, but are a lot more complex, confusing, and varied. “I’m really tired” could mean thirty different types of experience for me.

Different dots on my pain subway show up every day, keeping me on my toes, sometimes literally.

Some moments the pain-train hits all stops at once, and I hurt everywhere. Other times it is stopped at just eight or nine stops all at once and I only hurt there, all in slightly varying ways or intensities. Some places it is a deep ache or throb, and other times or places it is an acute stabbing.

The word fogginess feels like the understatement of the century. If a black, thick, and heavy fog, that not even having cat’s eyes spread throughout the middle of it would mean you could drive in it, counts, then it is the appropriate word to use.

No wonder I rarely feel present to what or who is around me, or like myself when that is happening inside my head…

It is hard to feel positive when this is happening. I feel helpless, lost, scared, alone, and confused. Often all I can do is dissociate from my body in order to do something distracting, only to crash ten minutes, a few hours, or a day later.

It doesn’t matter if I do something nourishingly distracting or destructively distracting, I still crash… I just might have happier memories to keep with me whilst I’m crashing if I did something nourishing.

Other times when I feel too ill to move or function at all, I numb myself with Facebook or Netflix or something else. I do this a lot,but in moments I feel I’m going to break from the intensity of my experience, this feels like all I can do.

Even when doing this, the symptoms and the emotional pain are still there. Somehow just having distraction away from the intensity and feeling slightly numb makes it more manageable, but doing so hurts my heart during and after.

I feel scared of the intensity of my experience, but I also feel scared of the unknown, the future down the road. I feel scared of what will happen later on if I feel this ill now — the ironic and hilarious quality of anxiety that stops me from resting and takes me out of my present and into a future that doesn’t matter right now.

But that’s the thing, it does matter when I’m holding hands with anxiety — all the uncertainties in my life come flooding forward, and sit on my face, leaving me unable to see anything else.

Pain, fatigue, and other symptoms trigger a panic response in me that I end up feeling frozen in. I get stuck in a cycle of symptoms and fear, and awareness of this cycle only perpetuates it.

Earlier it took me three hours to walk a route that usually takes 20 minutes because I was so fucking exhausted and sore that I had to keep lying down for rests in the grass.

I feel like a shadow of the person I used to be, and this breaks my heart often, but if I see myself and my life through a more compassionate lens, I see the brilliance and honest truth that I am, even when I feel the furthest from it.

My physical or emotional experience isn’t who I am, and it isn’t who you are either.

It is part of my experience, and it is part of yours, but it will never be your whole.

Previously published on Rebelle Society.