Table of Contents
Before the storm, the world was a vibrant, sprawling ecosystem.
For Maya, life was a coral reef, teeming with energy and color.
A competitive figure skater in her youth, she moved with a dancer’s grace, her days a complex choreography of school, work, and ambition.1
The reef was resilient, bouncing back from the occasional stress, its currents of energy flowing predictably.
Then, the weather changed.
It started subtly, after a nasty virus she couldn’t seem to shake.3
The vibrant colors of her inner world began to fade.
A strange, dull ache settled deep in her muscles and bones, a constant, unwelcome companion that felt like knives being punched into her hips.5
Sleep, once a reliable recharge, became a cruel joke; she’d wake up feeling as though she’d run a marathon in her sleep, hungover without the party.3
A thick, disorienting fog descended on her mind, stealing words from her tongue and blurring the edges of her focus.8
This was the bleaching event.
The catastrophic storm that didn’t rage on the outside but deep within, leaving her once-thriving ecosystem shattered, silent, and unrecognizable.
The War Against the Ghost
The journey into this strange new territory began not with clarity, but with confusion and dismissal.
Maya was living in a desolate, bleached landscape, but from the surface, the world saw only clear water.
This disconnect marked the beginning of a long, painful war against an invisible enemy.
The Medical Maze and the Erosion of Trust
Maya’s initial search for answers became a years-long odyssey through a disorienting medical maze.
She described her symptoms in detail—the widespread pain in all four quadrants of her body, the crushing fatigue, the cognitive lapses—but doctor after doctor sent her away with platitudes.1
“All of your tests and exams are fine,” they would say, the normal results of blood work and imaging studies becoming a verdict against her own experience.10
Some suggested it was anxiety or depression; others told her it was “all in your head”.6
This prolonged invalidation was a trauma layered on top of the illness itself.
The medical system, the very institution meant to provide answers and care, was instead generating the kind of profound emotional stress known to trigger or exacerbate these conditions.5
With each dismissal, her trust in medicine eroded, but more damagingly, so did her trust in herself.
“The science says I’m fine, so I must be, right?” she wondered, a question echoed by countless others who feel the disbelief of others is the hardest part of the illness.1
This diagnostic journey is not a passive waiting period; it is an active, harmful phase of the illness, inflicting a deep psychological wound by suggesting one’s suffering isn’t real.
The Battle Plan That Backfires: Pushing Through the Crash
Eventually, a name was given to her suffering: fibromyalgia, and a related condition, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).15
Armed with a diagnosis, Maya adopted the only strategy our culture seems to value: she decided to fight.
She would push through the pain, power through the fatigue, and reclaim the life that had been stolen from her.
This warrior mindset, often encouraged by well-meaning but uninformed advice, proved to be a disastrous battle plan.
Each time she tried to force her body back into its old rhythms, she would crash.
This wasn’t just a bad day; it was a devastating, system-wide collapse known as Post-Exertional Malaise (PEM), the hallmark symptom of ME/CFS.17
A short walk or a focused hour of work could lead to days in bed, with every symptom magnified to an unbearable degree.19
In the language of her inner world, it was as if she were trying to scrub the bleached coral back to life with a wire brush.
The effort didn’t revive the reef; it shattered the fragile remaining structures, triggering a toxic bloom that left the ecosystem even more barren and depleted.
This “push-crash” cycle is not a neutral pattern of good days and bad days.
It is a progressive, damaging process.
Research and patient experience show that repeatedly triggering PEM can lower a person’s baseline functioning over time, sometimes permanently.21
It is a form of biological debt accrual.
Each crash digs the patient into a deeper energetic hole, making a return to the previous baseline harder and harder.
Pushing through is not a noble effort; it is a self-destructive act that inflicts further injury on an already damaged system.
The Steward’s Epiphany
The war against her own body was a war she could never win.
The epiphany came not in a moment of victory, but in one of total surrender.
After a particularly devastating crash left her unable to do more than stare at the ceiling for a week, Maya finally let go.
The Surrender
She realized she could not conquer her body; she had to learn to collaborate with it.
This was the profound psychological shift from “fighting the body” to “strategic management”.22
She stopped asking, “How can I force my body to do what I want?” and started asking, “What does my body need from me right now?” Her identity shifted from a warrior trying to reclaim old territory to a steward of a new, fragile landscape.
In the quiet of her room, she mourned the loss of the old Maya—the dancer, the ambitious student, the woman who could move through the world without a thought to the energy it required.1
This grieving was not an act of giving up, but of letting go of a fight that was unwinnable to begin a new, more sustainable journey.
At the edge of her blighted reef, she put down the wire brush and, for the first time, simply observed.
Understanding the New Ecology (The Science of the Crash)
As a steward, her first task was to understand the new rules of her internal ecosystem.
The reason her old battle plan failed lies deep within the body’s cellular biology.
The profound fatigue, pain, and cognitive dysfunction of fibromyalgia and ME/CFS are not psychological failings but symptoms of a complex, systemic biological illness.
The central nervous system is on high alert, a state known as central sensitization.
In this state, the brain and spinal cord amplify pain signals, essentially turning the volume of sensory input all the way up.
A light touch can feel painful, and a minor ache can become a debilitating roar.5
At the same time, the body’s immune system is in a state of confused, chronic dysregulation.
It shares features with autoimmune diseases, where the body’s defenses mistakenly attack healthy tissues, leading to persistent inflammation.23
This low-grade, constant state of alarm contributes to the flu-like malaise that so many experience.10
The most critical breakdown, however, happens at the cellular level.
Post-Exertional Malaise is the direct result of a catastrophic energy production failure.
The mitochondria, the tiny power plants inside every cell, become damaged and inefficient.
When a person with ME/CFS exerts themselves, their cells cannot produce enough energy (adenosine triphosphate, or ATP) to meet the demand.
This energy deficit is compounded by the production of harmful byproducts like oxidative stress, which causes further cellular damage.25
The result is a system-wide power outage.
Recent, groundbreaking research analyzing cerebrospinal fluid has shown that after exertion, the entire metabolic environment of the brain shifts dramatically.
Instead of producing energy and building blocks, the brain of an ME/CFS patient shifts into a state of consumption and dysfunction, providing a clear biological explanation for the post-exertional cognitive fog, pain, and total body collapse.28
This new understanding led Maya to the concept of the “Energy Envelope”.29
The reef’s carrying capacity—the total amount of energy it could safely generate and use in a day—was now drastically smaller.
The steward’s primary job was to stop exceeding that limit and instead learn its precise dimensions.
Table 1: The Biology of the Crash – Why “Pushing Through” Hurts
| The Feeling (The Symptom) | The Analogy (What’s Happening to the Reef) | The Biology (What’s Happening in Your Body) |
| Profound Exhaustion After Minor Activity | The Reef’s Power Plants Suffer a Blackout | Mitochondrial dysfunction leads to a cellular energy crisis. Your body cannot produce enough ATP (energy currency) to meet demand, and the process creates harmful oxidative stress, leading to a system-wide energy deficit.25 |
| Brain Fog / Can’t Think Clearly | The Communication Network is Overloaded with Static | Post-exertion, metabolic shifts in the cerebrospinal fluid disrupt neurotransmitter function and neural pathways. The brain literally runs out of the fuel needed for clear, fast processing.28 |
| Widespread Pain Flare | The Defense System Sounds a False Alarm | Central sensitization means the nervous system is already amplifying pain signals. Exertion adds inflammatory signals from the immune system and metabolic stress, causing this amplified system to flare dramatically.5 |
| Flu-like Sickness, Sore Throat, Swollen Glands | A Toxic Algae Bloom Spreads Through the Water | The immune system overreacts to the stress of exertion, releasing inflammatory cytokines that create the classic symptoms of sickness. It’s a real immune response, but to an internal trigger, not an external pathogen.20 |
| Delayed “Crash” 24-72 Hours Later | The Tide Goes Out, Revealing the Full Extent of the Damage | The biological consequences of over-exertion are not immediate. It takes time for the metabolic byproducts to build up, for the inflammatory cascade to peak, and for the full impact of the energy deficit to be felt across the body’s systems.20 |
The Art of Reef Stewardship (A Practical Guide to Pacing)
Acceptance and understanding were the first steps.
The next was to translate that knowledge into a new way of living.
Maya had to learn the art of reef stewardship, a practice centered on the principle of pacing.
Pacing is not about being passive; it is an active, strategic form of energy management designed to stay within the limits of the energy envelope, thereby avoiding the devastating cycle of push-and-crash.33
Charting the Tides: Becoming a Data Scientist of the Self
The first rule of stewardship is observation.
Maya had to stop guessing her limits and start measuring them.
She became a data scientist of her own body, using an activity and symptom diary to track her daily life.13
She noted not just what she did, but how she felt immediately after, and crucially, 24, 48, and 72 hours later, learning to spot the delayed signature of P.M.32
For many, wearable technology like a heart rate monitor can be a game-changer, providing objective data that helps identify the precise heart rate threshold that triggers a crash.
By keeping her heart rate below this value, she could prevent PEM before it started.13
Building Breakwaters: Managing All Forms of Exertion
A critical part of Maya’s new understanding was that “exertion” wasn’t just physical.
The energy envelope is a single, unified budget, and every stressor draws from it.
Cognitive exertion (like a long conversation or reading a complex document), emotional stress (an argument or even intense excitement), sensory overload (bright lights, loud noises), and orthostatic stress (the simple act of standing or sitting upright) were all significant withdrawals from her energy account.13
This insight transformed her approach to daily life.
It was no longer about managing a dozen different symptoms, but about managing one thing: her central energy budget.
She began building “breakwaters” to buffer her system.
She would break cognitive tasks into 15-minute chunks.
She learned to plan for rest after an emotionally charged phone call.
She wore earplugs in noisy stores and sunglasses indoors.
She did tasks sitting down whenever possible.
Each strategy was a way of conserving precious energy for what mattered most.
The Rhythm of the Reef: Pacing in Practice
With her limits charted and her breakwaters in place, Maya began to practice the daily rhythm of pacing.
This involved several key strategies:
- Pre-emptive Rest: Instead of only resting after she felt exhausted, she learned to rest before a planned activity to build up a small reserve.13
- Task Switching: She avoided fatiguing one system by alternating activities—for example, 15 minutes of reading (cognitive) followed by 15 minutes of quiet rest, followed by 10 minutes of gentle stretching (physical).33
- Breaking It Down: Large tasks were deconstructed. Cooking dinner wasn’t one activity; it was five small ones—chopping vegetables in the morning, taking a break, measuring spices in the afternoon, another break, and so on.13
- Establishing a Baseline: She found a level of activity she could consistently do every day without triggering PEM. This became her new baseline. Only after weeks of stability at that level would she attempt a very gradual increase, like adding one minute to her walk.33 This slow, methodical approach is the direct opposite of the harmful “pushing” inherent in graded exercise therapy.
Nourishing the Ecosystem: Complementary Supports
Pacing formed the foundation of her new life, but Maya also focused on nourishing her internal ecosystem.
She established a strict sleep schedule, going to bed and waking up at the same time every day, even on weekends, to support her body’s natural rhythms.9
She worked with a therapist to process the grief and anxiety that came with chronic illness.36
While vigorous exercise was harmful, gentle movement like tai chi and stretching, done carefully within her envelope, helped with stiffness.38
She also adopted an anti-inflammatory, whole-foods diet, which some patients find helps to calm the system-wide inflammation.38
These supports didn’t cure her, but they created a healthier, more stable environment in which her reef could begin to stabilize.
A Different Kind of Beauty
Maya’s life is not what it was.
The reef is not the bustling metropolis of her youth.
It is quieter, more delicate.
Some days, the fog still rolls in, and the aches are more pronounced.
But it is no longer a barren wasteland.
Through careful, compassionate stewardship, a new ecosystem has emerged.
It is alive, and it has its own unique, subtle beauty.
She has learned to find joy not in grand adventures, but in small, sustainable moments: the warmth of the sun on her face during a five-minute sit in the garden, a quiet conversation with a friend that doesn’t drain her, the satisfaction of preparing a simple meal over the course of a day.
The solution was not a pill or a procedure, but a new way of being.
This journey transformed her from a victim of her biology into an expert in her own care.
By surrendering the war, she won back her life—not the life she had before, but a new one, rebuilt with wisdom, patience, and a profound respect for the delicate reef within.
Works cited
- A life with fibromyalgia and a hopeful future – Patients Rising Stories, accessed on August 9, 2025, https://patientsrisingstories.org/story/life-with-fibromyalgia-and-hopeful-future/
- IamA 24 y/o female living with Fibromyalgia. AMA! – Reddit, accessed on August 9, 2025, https://www.reddit.com/r/IAmA/comments/2e3b2l/iama_24_yo_female_living_with_fibromyalgia_ama/
- Chronic Fatigue Syndrome: My 13 Year Crash to Cure Story – rebecca tolin, accessed on August 9, 2025, https://www.rebeccatolin.com/blog/chronic-fatigue-syndrome-crash-to-cure-story
- 8 Key DNA Regions More Likely To Be Altered In People With ME/CFS, Finds 27,000-Strong Study | IFLScience, accessed on August 9, 2025, https://www.iflscience.com/8-key-dna-regions-more-likely-to-be-altered-in-people-with-mecfs-finds-27000-strong-study-80341
- Fibromyalgia – Symptoms & causes – Mayo Clinic, accessed on August 9, 2025, https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780
- My Fibromyalgia Recovery Story: How I went from chronic illness to feeling great! – Maya Lombarts, accessed on August 9, 2025, https://mayalombarts.com/fibromyalgia-recovery-story/
- Liz’s Story | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – CDC Archive, accessed on August 9, 2025, https://archive.cdc.gov/www_cdc_gov/me-cfs/patient-stories/stories-liz.html
- Fibromyalgia: Causes, Symptoms, Diagnosis, and Treatment – Healthline, accessed on August 9, 2025, https://www.healthline.com/health/fibromyalgia
- Fibromyalgia – Diagnosis & treatment – Mayo Clinic, accessed on August 9, 2025, https://www.mayoclinic.org/diseases-conditions/fibromyalgia/diagnosis-treatment/drc-20354785
- Fibromyalgia – StatPearls – NCBI Bookshelf, accessed on August 9, 2025, https://www.ncbi.nlm.nih.gov/books/NBK540974/
- Evaluation of ME/CFS – CDC, accessed on August 9, 2025, https://www.cdc.gov/me-cfs/hcp/diagnosis-testing/evaluation-of-me-cfs.html
- Nicola’s Story | Client Stories – The Fibro Guy, accessed on August 9, 2025, https://www.thefibroguy.com/client-success/nicola-fibromyalgia/
- Pacing and Management Guide for ME/CFS, accessed on August 9, 2025, https://www.meaction.net/wp-content/uploads/2021/02/Pacing-and-Management-Guide-for-ME_CFS-9.pdf
- I have ME/CFS, AMA! : r/IAmA – Reddit, accessed on August 9, 2025, https://www.reddit.com/r/IAmA/comments/4e4m3h/i_have_mecfs_ama/
- Is fibromyalgia similar to ME/CFS? – ME Research UK, accessed on August 9, 2025, https://www.meresearch.org.uk/is-fibromyalgia-similar-to-me/
- The link between fibromyalgia and chronic fatigue syndrome – Medical News Today, accessed on August 9, 2025, https://www.medicalnewstoday.com/articles/fibromyalgia-chronic-fatigue-syndrome
- Clinical descriptions of ME/CFS – Wikipedia, accessed on August 9, 2025, https://en.wikipedia.org/wiki/Clinical_descriptions_of_ME/CFS
- Fast Facts: ME/CFS | ME/CFS | CDC, accessed on August 9, 2025, https://www.cdc.gov/me-cfs/about/fast-facts-about-me-cfs.html
- Fibromyalgia patient stories: The Roller Coaster of Diagnosis – WeAreMore, accessed on August 9, 2025, https://wearemore.life/fibromyalgia-patient-stories-roller-coaster/
- Post-exertional malaise – MEpedia, accessed on August 9, 2025, https://me-pedia.org/wiki/Post-exertional_malaise
- Patient and Caregiver Resources – Solve ME/CFS Initiative, accessed on August 9, 2025, https://solvecfs.org/me-cfs-long-covid/patient-and-caregiver-resources/
- Coping with the Impacts of CFS and FM | ME/CFS & Fibromyalgia …, accessed on August 9, 2025, https://www.cfsselfhelp.org/library/coping-with-impacts-cfs-and-fm
- What Causes ME/CFS Causes – CDC, accessed on August 9, 2025, https://www.cdc.gov/me-cfs/causes/index.html
- www.cdc.gov, accessed on August 9, 2025, https://www.cdc.gov/me-cfs/causes/index.html#:~:text=Immune%20system%20changes,attacks%20the%20body’s%20healthy%20tissues.
- Understanding Post Exertional Malaise (PEM) in ME/CFS – OMF, accessed on August 9, 2025, https://www.omf.ngo/pem-in-mecfs/
- Mitochondrial Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – American Physiological Society Journal, accessed on August 9, 2025, https://journals.physiology.org/doi/10.1152/physiol.00056.2024
- The Relationship Between Chronic Fatigue & Mitochondrial Health, accessed on August 9, 2025, https://www.ifm.org/articles/chronic-fatigue-and-mitochondrial-health
- Exertional Exhaustion (Post-Exertional Malaise, PEM) Evaluated by …, accessed on August 9, 2025, https://www.mdpi.com/1422-0067/26/3/1282
- Energy envelope maintenance among patients with myalgic encephalomyelitis and chronic fatigue syndrome, accessed on August 9, 2025, https://pmc.ncbi.nlm.nih.gov/articles/PMC5750135/
- Energy Envelope Theory – MEpedia, accessed on August 9, 2025, https://me-pedia.org/wiki/Energy_Envelope_Theory
- Unravelling the Connection Between Energy Metabolism and Immune Senescence/Exhaustion in Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – PubMed Central, accessed on August 9, 2025, https://pmc.ncbi.nlm.nih.gov/articles/PMC11940106/
- Pacing – Visible, accessed on August 9, 2025, https://www.makevisible.com/pacing
- Pacing – MEpedia, accessed on August 9, 2025, https://me-pedia.org/wiki/Pacing
- Pacing – The Ehlers-Danlos Support UK, accessed on August 9, 2025, https://www.ehlers-danlos.org/wp-content/uploads/2017/07/pacing-for-people-with-me-booklet.pdf
- 8: Treatment Options | ME/CFS & Fibromyalgia Self-Help, accessed on August 9, 2025, https://www.cfsselfhelp.org/library/8-treatment-options
- Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – Diagnosis and treatment, accessed on August 9, 2025, https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/diagnosis-treatment/drc-20360510
- Chronic Fatigue Syndrome | Diagnosis & Treatment – UCHealth, accessed on August 9, 2025, https://www.uchealth.org/diseases-conditions/chronic-fatigue-syndrome/
- Fibromyalgia: Treatment and Medications – WebMD, accessed on August 9, 2025, https://www.webmd.com/fibromyalgia/medicines-to-treat-fibromyalgia
- Donna’s Story | DrFuhrman.com, accessed on August 9, 2025, https://www.drfuhrman.com/success-stories/1094/donnas-story
