**Trigger Warning. This poem may be difficult to read for some individuals. Please take care. Here is a link to BHC’s Crisis Resources page.**

Slowly Dying

I’m on earth, and I no longer feel like I’m living; instead, I’m slowly dying. It’s like being in a different time zone and plane, where time doesn’t exist. You are an observer – a deep feeler. Things that once matter don’t anymore – only people, love, kindness, peace, glimpses of joy, empathy, and compassion. Maybe that’s the point of living, to learn these qualities?

It feels like slowly dying, but being stuck in an immobile body filled with pain to watch others live. Events, entertainment, and celebrations no longer exist because my body doesn’t have the energy and strength because of Post Exertional Malaise. I fight to be there for loved ones. I hear about their life’s. It lifts me while I’m slowly dying.

What I feel inside is a battle that’s taken over my body. I fight with all I have, and I can feel it’s not enough. I don’t want to tell anyone this. I want them to have hope for me and the life we once had together. I borrow their hope to get through another day. I hope for a cure a release from this daily feeling of slowly dying.

My Bateman Horne Center provider gives me hope as she compassionately cares for so many suffering from this illness. My specialist there is willing to meet through Telehealth and understands the toll it takes for a short appointment. All of my specialists who listen and believe me give me strength to persevere.

Leaving my bed is a huge deal. I use precious energy saved up to get help from other specialty doctors. I go out with hope to feel alive. Long exhausting appointments and no help. There is no cure! “Sorry, I can’t help you!” I hear, but pay your bill.

Money, money, money!!!!! No help, but pay your bills while you’re slowly dying. Drain your bank accounts for tests and care. Plea with insurance to cover my costs. Wait on hold with pharmacies. Pop pills all day long to stay alive while I am slowly dying. Here is an IV to keep you here. Lay there slowly dying every day…..

This breaks my heart. To see my husband work so hard and our accounts be drained. He can’t fix me even though he wishes he could. He worries seeing his sweetheart slowly dying. Every night, he faithfully comes to my bedside with food that he’s made for me to care and keep me alive. He separates my hundreds of pills in daily compartments. He hates pills. I hate depending on them to survive. He holds me tight. I feel loved. I cling to him, a love intertwined through triumph and tragedy.

I wait for 8 pm to go to sleep to get a break from this prison of solitary confinement my body is trapped in. Just to wake up and exist in bed all day again, slowly dying. Severe Myalgic Encephalomyelitis from Long Covid is a disease that feel like slowly dying.

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 submitted as part of the Reflections of ME/CFS and FM and Long COVID Awareness Day Virtual Event on May 14th, 2024.