Coping … and Hoping …

A Rhyming Little Poemlet About Keeping Our Inner Spark Going

Hello there, you! Yes, you!

If you’ve seen any other of my poems by now, you know that I don’t usually provide any preamble because I’d like to think they can stand on their own. As I also can do, from time to time, more often lately! : )

But since I’m new here and many of you don’t know me personally, I’d like to provide a bit of context for this one. I have Chronic Fatigue Syndrome (CFS) - Myalgic Encephalomyelitis (ME), with Post-Exertional Malaise (PEM) and Orthostatic Intolerance (OI), which is a whole lot of syllables and acronyms that basically mean I am mostly housebound, bedbound some days, and have to pace myself and go very, vry slowly even on the better days when I can, say, go out for a meal, socialize, and experience life like a “normie” instead of a “spoonie” (look it up if curious).

So. This CFS sh*t has been going on for me for 20 years, since I caught Epstein-Barr Virus when my then-five-year-old came home from kindergarten with mono. Mild for most of those years, it turned moderate-severe last May after a bout of pneumonia.

I’m coming up now, moderate with days of mild. A sunnier forecast. Hooray!

Mild CFS means: “Live like a regular person but take it easy and don’t overdo things.”

Moderate CFS means housebound most days.

Severe CFS means bedbound most or all days.

Long Covid is another form of CFS-ME. A.k.a. post-viral syndrome, CFS-ME actually can be brought on not only by a virus, but also by mold exposure, Lyme, stress, or trauma. Over 1.5 million in the US have diagnosed CFS-ME and there are likely many more who have not yet been diagnosed.

CFS does NOT just mean “tired.” Symptoms vary from person to person, and even minute to minute, but may involve numerous bodily systems and include:
*exhaustion, made worse by exercise or any physical or even mental exertion, and not relieved by sleep or rest
*rapid heartrate (tachycardia)
*dizziness, vertigo, often caused by drastic changes in blood pressure or heartrate
*headaches
*brain fog
*tinnitus (ringing in the ear)
*pain
*sensitivity to light, sound, temperature.

In my case, I also was born with an extremely rare genetic immune deficiency called Functional Natural Killer Cell disease (fNKD), which means my NK cells, white blood cell fighters who are the front line in the body’s battle against pathogens, are actually pacifists instead of warriors. (I keep telling them: “Hey! This is WWII! Kill the muthatf*ckers! This isn’t time to be a pacifist. Fight! Fight! FIIIIGHHHHTTT!!!”)

That wasn’t diagnosed until my 40s. Even as a child, I was home sick a LOT. My lower-middle-class single mom, once a year, would buy tickets to Broadway plays, and we’d have to end up not showing up because I was sick. Many years and no-show shows later, she finally stopped buying tickets to anything in advance.

Strange how vindicating it can be to finally have a label that can helps us feel, “Hey, I am not imagining things. I am not a hypochondriac. I am not overreacting. I am not lazy. I actually have a condition that is recognized by modern medicine.”

And of course, knowledge is power. So once we know WHAT we have, we can discover HOW we can treat it, and I believe we have to heal anything and everything on multiple levels: physically, mentally, emotionally, environmentally, energetically, spiritually. Food is medicine.

HEALTH AFFIRMATIONS
And our body hears every word we say, so I am am reclaiming now:
“I am healing and I am healthy. I am vital, vibrant, and vivacious.
I love myself, my body, and I love my life.”

What fNKD meant for me since birth was a tendency to get sick. A lot. Respiratory infections yada yada yada. Almost died 21 times last time I counted, but I’ve decided to stop counting and focus on LIVING.

Fortunately, I have the fNKD well under control by taking Immpower mushroom blend, which is clinically proven (and proven by my own lab tests and life experience) to boost NK cell activity. Hooray! Infrared sauna, acupunture, sunshine, all help too.

By the way, if you or someone you love are dealing with anything similar and you’d like me to share what supplements, treatments, medications, etc. actually are helping me recover, let me know, and I’m happy to do so. Everyone’s body is unique, and a HUGE key is listening to your own body, and your body’s needs may change from minute to minute as well as day to day and week to week, however there are definite tips and tools I’ve gained along the way.

Meanwhile, as I recover from this latest bout of CFS, I am very grateful to expand my universe from just bedroom, to bedroom and couch, to to bedroom, couch, and lovely garden, to taking neighborhood walks with my sweet pooch, to now adding dining, going to movies, enjoying social visits with family and friends … and from working five hours a week (professional book editor and ghostwriter) back up to fifteen—woohoo!

And I am beyond deLIGHTed to be finding my true comeUnity here on Substack!
I love it here and would love to connect more with any poets, creatives, visionaries, everyone on the path of heartful, mindful, grateful living and loving. Welcome!

Let’s support and celebrate each other, and this crazy-gorgeous life!

View from my bedroom window

For anyone with a chronic illness or disability, or who has had a long recovery period from any injury or condition, this poem is for you. And remember, you are a survivor and a thriver!

I see you.

We got this!

With Love, Sage

Backyard Garden

TODAY'S POEM: ”Coping … and Hoping …” I’m finding it dreary:
this feeling so weary,
my eyes full and bleary
(just venting here, dearie). Yet, still, am here coping,
toward wellness am loping
through “yes”sing and “no”ping,
heart beating, and hoping.
© 2025 Sage Taylor Kingsley