MOONFLOWERS (Severe & Crashed Community)

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By April 2025, on virtually every page of this website, you will find this *moonflower* icon.  It links to content especially tailored to the Severe M.E. & "Crashed" Community.  

We owe a great deal of gratitude to members of our community who live with the most severe symptoms (whether from being temporarily "crashed" or enduring an extended period (for many of us, years) of the worst neurological and cognitive symptoms, including unrelenting deep muscle pain and profound exhaustion.  

It is this community and us at our severest symptoms during a crash that have made it impossible to dismiss ME/CFS as being overtired or emotionally fatigued.  It is when every part of our body screams something is wrong that medical professionals have not been able to overlook the physical, measurable markers that indicate profound un-wellness, even if they could not find a name or a singular diagnosis.  

And with dynamic disabilities where symptoms can vary day to day, hour to hour and minute by minute, it is vitally important that we are able to access resources in an instant.

So, in honor of the health warriors who survive in the harshest of circumstances, often isolated in darkened, quiet rooms, we refer to you as moonflowers -- fragrant wildflowers that bloom at night. 

Because of this rare quality of blooming in the darkness, moonflowers are considered beacons of hope during dark times.  

"I sat out on the porch in the darkness and watched the moonflowers bloom " ~Unknown

Rest is no longer an option.  It is a necessity.  Here, we suggest best practice for experiencing comfort and quiet so that your times of rest are soothing physically and mentally.  

Beautiful images, soothing sounds, everyday aids and gently supportive thoughts can each contribute to the comfort and quiet you need and deserve.

Expert advice and simple recipes for your caregiver or yourself to prepare.

Even a bedridden body is actively using several living systems.  And in the rooms where you rest, much can be done to soothe your senses & maintain your vitality.

Can you scream into a recording app?  Imagine the mix of sounds in a cosmic rap that between you and some other aching soul? What if you could get a friend to make it into an audio mix; then lay down a few words like *angry*, *terrified*, *lonely*, *despair*, *longing*...what if someone else felt the connected because you had the courage to scream?  What if your scream saved a life?

Can you speak 5 things that are white? Snow, clouds, my grandmother's hair, mashed potatoes, computer paper.  Or are your 5 things blue?

What if you could give yourself permission to make it all okay?  

Here's a thought: When have you ever watched a movie or read a book where the only sounds were of joy and pleasure?  This is how you know that your part of the drama matters.  This is how you know that your existence is part of the human story.  

Express yourself.  

What if instead of rehashing the latest news; the worst experience at a doctor's office; or how unfair the disability system is in your country, you made another choice?

What if you brought the person having severe symptoms a bouquet of flowers; quietly set out a tray of warm tea, cool drinks, a healthy snack, a gourmet chocolate?

What if you drew the curtain, checked the temperature of the room; changed the bedding; removed the everyday trash accumulating at their bedside; left them a care basket with cleansing wipes, fresh pajamas, printed out pictures of a family event, remembered to have a designated Zoomer to include them in activities when they had to stay in bed?

How much more healing, loving and just plain decent would it be to use your time and energy to bring them quiet comfort?

Maybe surprise them with noise reduction earplugs, so they can hear the soothing sounds & filter out the sharp, piercing ones.