When Chronic Fatigue Syndrome Feels Like an Energy-Sucking Vampire
Chronic fatigue syndrome (CFS) fatigue. The invisible illness vampire. The blood- (or energy-) sucking beast ever at your shoulder, teeth in your neck.
CFS fatigue is invisible. Many people with CFS have no visibly discernible symptoms. Only the bags under our eyes point to the constant torture people with CFS endure, swimming through every minute in a soup of muscle pain, brain fog and exhaustion. Constant CFS fatigue wears down your soul. It is the slow drip-drip-drip of your dreams, your carefree nature, your excitement, your spontaneous joy.
People with CFS are, in every single minute of every single day, exhausted.
CFS fatigue is a tiredness like nothing you have ever felt before. It feels a little like you simultaneously have the flu, a hangover, and ran a marathon the day before. The fatigue can build each day until it is an unrelenting crush. If you push too hard, ignore the blinking orange light — the warning sign — CFS fatigue feels like an overwhelming tide. It feels like wanting to lie down on the ground, right here, right now, and cry. It feels like being 2 years old again, helpless and hopeless and utterly devastated by a tiredness you can’t even recognize, let alone articulate.
People who have not experienced CFS fatigue are not privy to its unsavory habits. They are not privy to its indiscriminate attack, the sting of its sharp teeth. They wonder why you seemed fine one minute, and now suddenly can’t make decisions. Why your eyes go blank and you don’t blink. They can’t understand what’s it’s like being too tired to actually close your eyes, and too tired to focus them either. How you don’t know how exactly who you are, let alone what you want now.
CFS fatigue is with me from the moment I wake to the moment I drift off, wrecked every night. It is, in fact, also with me when I sleep, as my body fails to recharge overnight and my exhaustion stalks my dreams. Numerous times a day, CFS fatigue forces me to lie prone for half an hour/an hour/two hours, a pillow or whatever scrap of material I can find over my face, to snatch precious dark moments of recovery. Come to think of it, a coffin for a bed would come in handy.
CFS fatigue means I have to plan every day in advance. The threat of an all-encompassing fatigue “crash” means if I am going out anywhere, I need to know how I’m going to get there, how long I will be out, the proximity to seating, noise levels, temperature, access to snacks, how I am going to get home. CFS fatigue is why I can no longer go to the supermarket. The lights, stimulation overload, choice, decision-making and physical load is the perfect fatigue storm, rendering me stuck in bed for hours, groceries strewn on the bench.
Supermarkets, surprisingly, seem to be CFS sufferers kryptonite. Better just stick to the blood…
Caitlin Phillips-Peddlesden is an international development practitioner who currently works with Oxfam Australia has lived and worked in Belize, Samoa and Australia. She has had myalgic encephalomyelitis/chronic fatigue syndrome for 18 months. She cares about social justice, dogs, and dreams of riding bikes again some day.
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