“Don’t Irritate the Invisible Beast!”

by | May 10, 2022 | Awareness Day, BHC News, Long COVID, ME/CFS, Patient Voice

**Trigger Warning: Chronic Illness**


“Don’t Irritate the Invisible Beast!”

Morning birds awake my unrefreshed insomnia ladened eyes as another day has begun. A glimmer of hope flashes through my mind, what if today the Invisible Beast has left my body; will I be “normal”?

I cautiously open one eye and then the other to see what lurks ahead. My feet hit the floor and the walls start spinning. I feel my heart race faster than a Jockey on a dusty track. My body warns me that the Beast is still here. A bright caution sign flashes before my eyes, DON’T IRRITATE THE INVISIBLE BEAST!
Stumbling to the Lou, I notice my legs fill with a sluggish weak jelly substance. Is a shower in my plans? Not today! The warm water may irritate the Beast. Relief floods me as I look in the mirror and don’t see the 90-year-old body that I feel. My bed is chanting to my fatigued body, “Come back and be stuck with me today!” My mind wants to break free from the trapped crib cell I exist in.

I close my eyes to turn down the knob of pounding in my brain. The slightest bit of light, sound and movement will wake up the Beast. It’s difficult to process when someone wants to chat. I stumble trying to pull lost words from my brain. The person replies with something important; all I hear is Wah, Wah, Wah!

Zaps of stabbing and burning throughout my body remind me to be ready for battle. I swallow some of my favorite breakfast food that has been placed on my bed tray. A luxurious pampered dream? NO! My stomach and bowels roll around in protest to the substance that should give my lethargic body energy. Once enjoyment to food, now stinky irritable reactions.

The Beast attaches to my body like a parasite. When people see me on a good day, they can’t see the Invisible Beast. I know it’s still stalking me so I cautiously use a wheelchair to take my disabled body out. Seeing the world outside my room is like climbing Mount Everest: exciting, but so exhausting! I give it my all and get demeaning glares from passersby because they can’t see the debilitating cruel Beast.

I never know when the Beasts grouchy presence will take my body and mind down the dark torture hole. In the hole lives body builders with metal baseball bats, they viciously hit me like a whack-a-mole game. Defeated I crash! Along comes the careless monster truck to run right over my broken body.

I listen to a little soft music to distract me from the pain. I remember whatever you do, don’t irritate the Invisible Beast! Once he is mad, I don’t know how long he’ll set up camp on my body- a day or months?

Oh, shoot! The beast is awake! My mind thinks of ways to evict him. My heart cries for relief. Somedays I want to explode the Beast with fuming anger. I hate him for snatching my life from being an active person. I dream of running and hiking. I’d gladly go to work and clean my house if I could escape the Beast.

On dark days I scream in his face, “Nasty Beast, why did you choose me? Please leave!” I desperately reach out to my support: family, friends, and providers. “Believe me! Help me as I live with this Beast! Please see me and encourage me to keep being the warrior I am.

Believing that the Beast’s temper could improve helps me live with M.E. and Long Covid. Over time I’ve learned to stop fearing the Beast and stun him with kindness. Pacing will train him to chill out. Hope propels my fighting spirit forward! I am not the Invisible Beast! I am still here, needed and enough. I will patiently give my body extra love and compassion, as I learn to dance carefully with the Invisible Beast.

Amy has a Bachelor’s degree in Elementary Education. Prior to getting sick, she lived it up with her two children as an adventurous stay-at-home mom. She led her family on traveling adventures and spent time in nature. Some of her hobbies included running marathons and practicing yoga. She lives in Salem, Utah, with her husband and children.

This poem was shared at the ME/CFS and FM Awareness Day Virtual Event on May 11th, 2022.

#MillionsMissing #MillionsMore #Hope4MECFS #Hope4FM #Hope4LongCOVID

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