How I Got Out of Rolling PEM: Part 2

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In these blog posts, I will tell you how I got into rolling PEM and what it did to my health and well-being (part 1). I will share how I got out of rolling PEM with the help of pacing, heart rate monitoring, and other strategies (part 2). I will also share with you how my quality of life improved after breaking the cycle of rolling PEM and what I learned from this journey (part 3).

You can find the other parts of this series at these links:

• Part 1: My nightmare summer of Long Covid-induced rolling PEM
• Part 2: How I got out of rolling PEM?
• Part 3: How did my quality of life improve?

Part 2: How I got out of rolling PEM?

Getting out of rolling PEM with very severe ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) was not easy. It took me a lot of time, patience, and trial and error to find the best way to manage my condition and avoid triggering more crashes. I had to learn to listen to my body and respect its limits, even when I wanted to do more or felt pressured by others. I had to balance rest and activity without overdoing it or underdoing it. I had to monitor my heart rate, symptoms, and energy levels and adjust my pace accordingly. I had to accept that I couldn’t do everything I used to do and focus on what I could do instead. I had to deal with the frustration, guilt, and grief of losing my abilities and independence. I had to cope with the isolation, loneliness, and stigma of having a misunderstood and invisible illness. I had to find support and understanding from people who cared about me and knew what I was going through. And I had to hope that one day, things would get better.

I needed to do a combination of things to get out of rolling PEM. What helped me was the following:

• Asking for help and delegating tasks: This approach allowed me to conserve energy better, reduce my stress, prioritize self-care, and find a sense of community.
• Setting boundaries: This was essential as it helped protect my limited energy and prevent overexertion, stress, and symptom flare-ups.
• Pacing with a heart rate monitor (HRM): This type of pacing aims to decrease time spent above AT (anaerobic threshold) to avoid using the broken energy system in ME/CFS.
• Getting co-morbidities under control: This was important to me to reduce the amount of stress my body was experiencing from flares. 
• Calming down the Autonomic Nervous System (ANS): Being hyperadrenergic impeded me from getting good rest during the day and night. I found that activities that promote parasympathetic activity were helping my Hyper POTS medications work more effectively.
• Using heart rate variability (HRV) to inform pacing: Tracking overnight and morning HRV allowed me to analyze the state of my ANS and pace accordingly. 
• Using mobility and accessibility aids: Mobility aids helped me reduce physical overexertion, dizziness, and syncope (fainting). Accessibility aids made it easier to do specific tasks like showering or other activities of daily living.
• Introducing low-dose Abilify (LDA) per ME specialist’s guidance: My ME specialist recommended I return to low-dose Abilify to see if it would help reduce PEM.
• Breaking down and modifying tasks to do them supine: Breaking down tasks into multiple steps with rest in between steps helped me incorporate pacing into my daily life.
• Monitoring symptoms during activity and noting signs of PEM: Monitoring symptoms during activity and noting signs of PEM allowed me to pace myself according to my energy limits and avoid overexertion. I could stop doing an action before the signs of overexertion kicked in. 
• Practicing Aggressive Rest Therapy (ART): Aggressive Rest Therapy taught me to listen to my body, respect my limits, and prioritize my well-being.

It took me several months of doing these things consistently to get out of rolling PEM. 

💡 Pacing Reminder:
This blog post is over 25 minutes long—because getting out from rolling PEM deserves depth and detail. If you live with ME/CFS or another energy-limiting illness, I encourage you to pace your reading just like you pace your energy.
Feel free to bookmark the page, break it into smaller sections, or use a read-aloud tool while lying down. Take breaks, rest your eyes, and come back when you’re ready.
This blog isn’t meant to be read in one sitting—it’s here to support you however and whenever you need it.

Acknowledgments

Before anything else, I want to acknowledge the privilege I’ve had in being able to pace for ME/CFS. Pacing—balancing rest and activity to avoid symptom crashes—isn’t a cure, but it’s a vital strategy for managing this chronic, often devastating illness.

But the reality is: not everyone with ME/CFS has the option to pace.

Many people face serious barriers that make pacing difficult or even impossible. I want to name some of those barriers here—not to offer solutions, but to affirm that these structural inequities are real and must be addressed.

• Lack of support: Some people don’t have partners, family, friends, or providers who believe them, understand their limits, or offer help. Instead, they’re pressured to push through or are met with judgment and disbelief.
• Lack of income: Many can’t afford to stop working, even when working makes them sicker. Navigating disability systems is a job in itself, and financial instability often leads to gaps in medical care, nutrition, housing, and basic survival.
• Lack of accessibility: From stairs and bright lights to noise and social stigma, many environments are hostile to people with ME/CFS. The world is often designed without us in mind—physically, emotionally, and socially.

I share my story not because I have all the answers, but because I believe lived experience matters. Writing this blog is my way of contributing to a growing movement of people with ME/CFS who are demanding recognition, respect, and rights.

If you’re someone who can pace, I hope this blog helps you refine your strategy. If you’re someone who can’t, I see you—and I’m writing this in solidarity with you, too. No one should have to fight this hard just to be believed, supported, or safe.

Together, our stories shape the future. And I hope mine helps push that future in the right direction.

Privilege

First and foremost, I want to acknowledge the privilege I have in navigating this illness with the support of a loving and understanding partner. Their care, encouragement, and belief in my healing have made a profound difference. Not everyone with ME/CFS has someone who respects their boundaries, understands their condition, or offers daily support without guilt or judgment. I recognize how rare and meaningful that is.

I am also privileged in ways that many others are not. I don’t face the same financial pressures that force so many people with ME/CFS to work beyond their limits. I live in an accessible, quiet home tailored to my needs. These circumstances allow me to focus on recovery strategies that would be far more difficult—or impossible—without them.

I do not take these privileges for granted. They are not a reflection of merit, willpower, or “doing recovery right”—they are the result of structural and circumstantial advantages. I recognize that the systems we live in are unequal, and that many people with ME/CFS are denied the support, care, and resources they deserve. This blog is written with deep awareness of those disparities and in solidarity with those facing them.

Your Mileage May Vary (YMMV)

This blog shares what helped me manage and get out of rolling PEM. My journey involved a lot of trial and error, and the strategies that worked—like pacing, resting around activities, tracking symptoms, or trying specific medications—may not be helpful or accessible to everyone.

ME/CFS is not one-size-fits-all. Symptoms vary, root causes are still debated, and what helps one person might harm another. Please treat this post as a story, not a prescription. I encourage you to work with a medical provider or ME-informed practitioner before making changes to your care plan.

I offer this blog in the spirit of mutual aid and awareness, hoping it sparks curiosity or comfort—but never pressure or comparison.

Disclaimer

The content of this blog is based on my personal experience and self-directed research as someone living with ME/CFS. I am not a medical professional, and nothing on this site should be interpreted as medical advice, diagnosis, or treatment.

This blog is intended for informational and educational purposes only. Always consult with your doctor or a qualified healthcare provider before starting or stopping any treatments, supplements, or interventions related to ME/CFS or any other health condition.

I do not endorse or recommend specific products, services, or therapies. Use of the information provided here is at your own risk. I cannot be held liable for any outcomes that result from actions taken based on this content.

Asking for help and delegating tasks

Asking for help and delegating tasks was one of the most essential coping strategies I used to improve my pacing and quality of life.

At one point, I felt like I was mentally drowning. The list of things I couldn’t keep up with—filing medical claims, paying bills, and completing SSDI disability paperwork—kept looping in my mind. Even though I physically couldn’t handle them, they weighed heavily on me. The stress alone was draining.

Eventually, I reached out. I asked my partner for help, and I posted in online ME/CFS support groups for suggestions. The difference was immediate and transformative.

For example, when I had to fill out disability forms, my partner stepped in to make the process manageable. He read one question at a time and typed up my answers. We took breaks in between to avoid overwhelming my system. This wasn’t just assistance—it was pacing in action.

He also helped me review the PEM Avoidance Toolkit, and together we began tracking my symptoms using its tables. This gave me a clearer picture of what triggered my crashes and helped me identify patterns in my rolling PEM. The toolkit became more than a document; it became a framework we could both follow to prevent setbacks.

Monitoring my symptoms and noting PEM signs didn’t just help me avoid setbacks—it helped me finally exit the constant crash cycle. I still live with ME/CFS, but I’m no longer trapped in rolling PEM. Now, with more awareness, better pacing, and early intervention, I have a more stable baseline and more predictability in my day-to-day life.

As I let go of the need to do everything myself, it felt like a giant weight had been lifted. But the benefits didn’t stop at emotional relief. Delegating and asking for help impacted nearly every aspect of my health:

How Asking for Help Supported My Recovery

• Energy Conservation: Delegating tasks allowed me to preserve my limited energy for critical things like eating, hygiene, and gentle movement. This significantly reduced my risk of overexertion and PEM.
• Stress Reduction: Offloading responsibilities helped dial down the mental strain that can trigger symptom flares. With less stress, my nervous system felt calmer, and I could focus on healing.
• Prioritizing Self-Care: Once I stopped spending all my spoons on paperwork and logistics, I had more capacity to rest, listen to music, practice gentle breathing, or simply exist without pressure.
• Fostering Connection: Reaching out to ME/CFS support groups gave me validation and solidarity. I was reminded I wasn’t alone—and that connection became medicine in its own right.
• Improving Well-Being: Letting others support me created space for physical, emotional, and mental recovery. I could breathe again. Over time, this balance laid the groundwork for lasting improvements.

 

Letting go of control wasn’t easy. But by asking for help and allowing others to step in, I built a more sustainable life. Delegation wasn’t a sign of weakness—it was a powerful act of survival.

Setting boundaries

Boundaries are the limits and rules we set in relationships. People with healthy boundaries can say “no” when they need to ^[1]Therapist Aid. “Setting Boundaries: Info and Practice.” https://www.therapistaid.com/therapy-worksheet/setting-boundaries. Accessed April 8, 2023.. But for many of us with ME/CFS, setting boundaries can be incredibly difficult. Guilt, shame, fear of being misunderstood, or losing vital connections often hold us back. Despite these challenges, setting boundaries became a non-negotiable part of managing my illness. It helped me avoid overexertion, reduced stress, and prevented flares ^[2]Reddit. “Setting boundaries : cfs.” https://www.reddit.com/r/cfs/comments/nfsh3h/setting_boundaries/. Accessed April 8, 2023. ^[3]Inspiring Change London. “ME/CFS: 12 Steps For Setting Boundaries – Inspiring Change London.” https://inspiringchange.co.uk/mecfs-12-steps-for-setting-boundaries/. Accessed April 8, 2023..

Growing up, my family routinely crossed my boundaries. I became the fixer—the one everyone leaned on. When my grandmother became ventilator-dependent after West Nile Virus, I took on the massive responsibility of handling her care and finances, even though I lived thousands of miles away. I coordinated Medicaid coverage, hired a lawyer, and even oversaw the renovation of her home through an accessibility advocate so she could return from long-term care. I did all this while my body was collapsing under the weight of ME/CFS.

I didn’t want to disappoint my grandmother, who I love deeply, but trying to hold everything together nearly destroyed me. The stress was immense—and it made me sicker.

Eventually, I had to plead with my family to respect my limits. I sent them a message explaining how ill I was and how much help I needed from my partner. I even asked my partner to call them to reinforce the severity of my condition. It was one of the hardest things I’ve done—but one of the most important.

Steps That Helped Me Set and Maintain Boundaries

1. Know your boundaries. I had to get clear on what I needed—from myself and others. That meant more rest, fewer stimuli, and more help with logistical tasks. For instance, I needed my parents in Florida to take over paperwork and manage my grandmother’s home renovation.
2. Communicate clearly. Using direct, assertive language helped. Instead of softening my message with apologies, I said things like, “I need some quiet time right now. Can you lower your voice or step into another room?” or “I appreciate the invite, but I’m not well enough to join. Can we reschedule?”
3. Enforce the limits. When someone pushed past my boundaries, I reminded them. For example: “We agreed you’d call before coming over—please don’t show up unannounced,” or “I can’t talk about my brother right now. Let’s change the subject.”
4. Adjust as needed. My needs changed, and so did my boundaries. Sometimes I had more bandwidth, sometimes less. I might say, “My health has improved—I’d love to go out quarterly,” or “Lately, I’ve been crashing more, and I need help with meals and errands.”

Eventually, I reached a point where I couldn’t even answer my phone. That forced my family to finally respect my limits. Setting boundaries protected my energy, reduced stress, and shielded me from worsening symptoms. It also reclaimed space for my well-being—and reminded me that self-respect and self-preservation are not selfish. They’re survival.

Pacing with a heart rate monitor (HRM)

Pacing with a heart rate monitor is a strategy that some people with ME/CFS use to help manage symptoms and avoid post-exertional malaise (PEM). The goal is to stay within one’s energy envelope—the limit of activity that does not trigger PEM. A common way to define this limit is by identifying the anaerobic threshold (AT), the heart rate beyond which the body starts consuming more energy than it can sustainably produce ^[4]American ME and CFS Society. “Pacing.” https://ammes.org/pacing/. Accessed April 8, 2023..

I decided to try pacing with a heart rate monitor because of the potential benefits it could offer. By tracking my heart rate, I could avoid going above my AT—which can fluctuate depending on factors like illness severity, stress, noise, or even social interactions ^[5]American ME and CFS Society “Pacing.” https://ammes.org/pacing/. Accessed April 8, 2023.. Pacing with a monitor helped define a safer activity level, made me aware of previously hidden limits, reduced overexertion and flares, and ultimately improved my quality of life ^[6]CFSSelfHelp. “Pacing by Numbers: Using Your Heart Rate to Stay Inside the Energy … Continue reading.

I first bought a MioPod armband, which connected to an app on my phone where I could set my target heart rate zone and monitor my heart rate in real time. It worked well at first and helped me avoid going above my anaerobic threshold.

But after some time, the company behind MioPod shut down and stopped updating the app. It eventually became incompatible with my phone, and I lost access to my data and settings. I also noticed accuracy issues—especially when I moved my arms or sweated.

After some research, I learned that chest straps are generally more accurate than wrist or arm-based monitors. I switched to a Polar H10 chest strap and paired it with the HeartGraph app, which many in ME/CFS pacing groups recommend. Because the standard Workwell Foundation guidance of staying below resting heart rate plus 15 bpm (RHR+15) didn’t work for me due to Hyper POTS, I instead used 50% of my max heart rate as a cap.

This approach showed me just how hard my heart was working, even at rest. It also gave me objective confirmation that my POTS wasn’t under control, which aligned with how terrible I was feeling.  Pacing with an HRM not only helped me stay within safer limits, but also made it clear that I needed help managing this comorbidity. That realization pushed me to seek professional treatment—something I’ll discuss in the next section.

Managing co-morbidities

Comorbidities are medical conditions that occur alongside another illness. For people with ME/CFS, comorbidities are common—and they often make symptoms more severe and life even harder to manage. ^[7]MEpedia. “Comorbidities of Myalgic Encephalomyelitis.” https://me-pedia.org/wiki/Comorbidities_of_Myalgic_Encephalomyelitis. Accessed April 8, 2023. Common ones include fibromyalgia, irritable bowel syndrome (IBS), orthostatic intolerance (OI), mast cell activation syndrome (MCAS), Ehlers-Danlos syndrome (EDS), sleep disorders, migraines, anxiety, depression, autoimmune diseases, and chemical sensitivities. ^[8]U.S. ME/CFS Clinician Coalition. “Clinical Management.” https://mecfscliniciancoalition.org/clinical-management/. Accessed April 8, 2023.

At first, I felt like I was chasing symptoms in a game I couldn’t win. Every new flare brought confusion and frustration—until I began to realize that not all of my symptoms were coming from ME/CFS or Lyme+. Conditions like POTS, MCAS, IBS, migraines, insomnia, and anxiety were all layering extra stress onto my system. Once I started actively managing these comorbidities, I noticed a shift: my baseline stabilized, and my body became just a little more manageable.

How Managing Comorbidities Helped Me

• Symptom Relief: Comorbidities often mimic or worsen ME/CFS symptoms. For example, anxiety intensified my pain and stress, OI made me dizzy and faint when upright, and allergies triggered widespread inflammation. Treating each one provided small but meaningful relief—making it easier to cope with ME/CFS itself.
• Improved Energy Levels: Sleep disorders drained my energy. IBS compromised hydration and nutrient absorption. Hyperadrenergic POTS left me constantly depleted, especially with my resting heart rate spiking 60+ bpm just from standing. Treating these helped reduce my daily exhaustion and gave me a little more capacity to function.
• Enhanced Sleep Quality: I dealt with multiple sleep disorders—including insomnia, narcolepsy, and REM-related adrenaline surges from dysautonomia. Poor sleep worsened everything: pain, cognition, fatigue, and mood. Over time, addressing these issues helped reduce night-time awakenings and morning crashes.
• Reduced Pain and Discomfort: Conditions like fibromyalgia and hEDS created persistent muscle and joint pain. Migraine flares were especially brutal. Managing hEDS and migraines led to a noticeable reduction in daily discomfort, making my ME/CFS symptoms more tolerable.
• Better Mental Health: Anxiety and depression are common with ME/CFS, but they’re not “just” emotional. They affect pain tolerance, motivation, treatment compliance, and even inflammation. Therapy, nervous system regulation, and medication helped reduce emotional spirals and boosted my resilience.
• Optimized Overall Health: Targeting comorbidities across body systems—immune, endocrine, cardiovascular, and neurological—helped me avoid downstream complications. For example, treating thyroid issues, small fiber neuropathy, or immune dysfunction with tailored protocols improved how my body handled stress and recovery.
• Personalized Treatment Plan: With help from my care team, I’ve developed a comprehensive plan tailored to my comorbidities. That includes medications (e.g., beta-blockers, antihistamines), supplements (e.g., magnesium, quercetin, mitochondrial support), lifestyle tools (e.g., abdominal binders, compression), and therapies like somatic work and pacing adjustments.

Examples from My Journey

Managing my comorbidities meant treating conditions like:

PCOS – I started hormonal therapy to regulate symptoms.

Primary Immunodeficiencies – I began IVIG, which helped stabilize my immune system.

Migraines – I added preventive meds and magnesium, which reduced attack frequency.

IBS – Dietary changes and gut-focused support improved digestion and nutrient absorption.

Hyper POTS – Med adjustments, an abdominal binder, and compression wear (as prescribed by my electrophysiologist) helped reduce blood pooling and improve circulation.

MCAS – I adjusted my supplement protocol, avoided histamine-rich foods, and optimized my antihistamines with my doctor’s guidance.

Caution and Perspective

Managing comorbidities is not a cure for ME/CFS. It doesn’t fix the underlying disease process. But it can lower the total symptom burden and reduce the frequency or severity of PEM crashes. That said, some treatments can trigger side effects or worsen ME/CFS if not carefully tailored. It’s essential to work with clinicians who understand both the primary illness and its overlapping conditions. ^[9]U.S. ME/CFS Clinician Coalition. “Clinical Management.” https://mecfscliniciancoalition.org/clinical-management/. Accessed April 8, 2023.

For me, managing comorbidities gave my body breathing room. It helped create a more stable foundation—one where healing felt possible.

Calming down the Autonomic Nervous System (ANS)

One of the biggest obstacles to my recovery was how constantly activated my nervous system felt. I lived in a state of “fight or flight,” even when I was trying to rest. This hyperadrenergic state—common in people with ME/CFS and POTS—kept me wired, tense, and unable to fully relax, let alone heal. My body was flooded with stress hormones, making sleep shallow, rest ineffective, and symptoms worse. I realized that unless I actively supported my parasympathetic nervous system—the “rest and digest” mode—my other treatments wouldn’t be as effective. I needed to calm my autonomic nervous system (ANS).

The ANS regulates involuntary functions like heart rate, digestion, and blood pressure, and it often becomes dysregulated in people with ME/CFS ^[10]The ME Association, 2018. https://meassociation.org.uk/wp-content/uploads/MEA-Summary-Review-Dysfunctional-ANS-in-MECFS-24.01.18.pdf. Calming it can improve overall stability and reduce the intensity of symptoms.

For me, Hyperadrenergic POTS was the main driver behind this constant sense of physiological alarm. This form of POTS involves excessive adrenaline production, which led to a rapid heart rate, high blood pressure, anxiety, tremors, and sweating. I knew I needed a two-pronged approach: medications and meditation.

My doctor prescribed medications to reduce heart rate, blood pressure, and adrenaline levels. I take beta-blockers like propranolol, as well as Corlanor and clonidine.

To complement my medications, I turned to meditation—but it wasn’t easy at first. My sensory overload was so intense that listening to guided audio meditations was overwhelming. The sound, even when gentle, felt like too much for my overstimulated system. So instead, I drew on a practice I had learned long ago: body scans.

 

I began calming my ANS by lying still and directing my attention to individual parts of my body, one at a time. I would focus on a single area—like my toes, my hands, or my jaw—bringing awareness and relaxation to each spot before moving on. This simple but powerful practice grounded me in the present and helped release tension without additional sensory input. It became my entry point into regulating my nervous system.

As my nervous system gradually stabilized, I was able to tolerate more. That’s when I introduced two forms of guided meditation that became daily tools for healing: Yoga Nidra and Metta.

Yoga Nidra is a guided, deeply restful meditation typically practiced lying down. It leads you through body awareness, breath, and visualization exercises to induce a state of profound relaxation. It helped slow my breathing, ease muscle tension, and settle my heart rate. I practiced it every morning for about 90 minutes, giving my day a calm and centered start.

Metta meditation, also known as loving-kindness meditation, involves silently repeating compassionate phrases like “May I be at peace” or “May all beings be safe.” This practice helped me cultivate emotional balance, reduce anxiety, and build resilience against the emotional toll of chronic illness ^[11]NC State University Yoga, n.d. https://yoga.dasa.ncsu.edu/meditation/metta-meditation/.

Together, these practices helped shift my system from survival mode into healing mode.

Using mobility and accessibility aids to get out of rolling PEM

One of the clearest turning points in my illness came when walking—even short distances—began to trigger presyncope and syncope. At first, my partner used a transport chair to help me get to the bathroom. Eventually, even that became too taxing, and we switched to a bedside commode. These changes felt significant, but they were necessary acts of adaptation, not defeat.

Mobility and accessibility devices became essential to preserving my quality of life. With severe ME/CFS, every bit of energy counts, and these tools allowed me to use mine more wisely. They weren’t just aids—they were strategies that supported my safety, dignity, and autonomy.

Here’s how they helped:

• Conserving energy: With virtually no energy reserves, even basic tasks left me depleted. Devices like transport chairs, rollators, and wheelchairs reduced the physical strain of moving around. For example, using a transport chair allowed me to get to the bathroom without risking collapse or triggering PEM.
• Preventing overexertion: ME/CFS punishes exertion with post-exertional malaise—a worsening of symptoms that can last days or weeks. These tools helped me stay within my energy envelope by minimizing unnecessary movement and strain.
• Improving accessibility and safety: Devices like grab bars, shower chairs, and anti-slip bath mats allowed me to complete essential tasks like bathing or hygiene with less risk. One of the most helpful additions was a cushioned bath mat that allowed me to lie down in the shower—a safer and more energy-efficient way to clean up.
• Using manual assistance and modified tools: Small shifts made a big difference. Instead of using a manual toothbrush, we switched to an electric one. I brushed my teeth lying in bed while my partner brought over the toothbrush prepped with toothpaste and a cup of water. A friend sent me a lap desk that we repurposed as a food tray. Meals were brought to my room, and I ate lying down or propped on my side. These adaptations helped me preserve energy and maintain hygiene and nutrition in a way that fit within my physical limits.

 

Ultimately, using mobility devices and hands-on assistance wasn’t about giving in—it was about honoring the reality of my condition and adapting in ways that allowed me to live with more comfort, dignity, and control. I’m deeply grateful for the ways these tools helped me reclaim parts of my daily life that might have otherwise been lost to illness.

Using HRV to inform pacing

Heart Rate Variability (HRV) became one of my most valuable tools for managing energy and preventing crashes with ME/CFS. HRV measures the variation in time between heartbeats and serves as a window into the autonomic nervous system (ANS)—particularly its balance between the sympathetic (“fight or flight”) and parasympathetic (“rest and digest”) branches.

For someone like me, living with Hyperadrenergic POTS on top of ME/CFS, my nervous system often defaulted to high alert. HRV gave me objective feedback on how strained or recovered my system was, helping me adjust my pacing before a post-exertional malaise (PEM) crash hit.

How I Tracked HRV

• Overnight HRV: I used both the Oura Ring and SweetBeatHRV to track HRV while sleeping. These tools helped me assess how well my body recovered overnight and whether I was trending toward balance or burnout.
• Morning HRV: Each morning, while lying supine and still, I used Elite HRV and HRV4Training with a Polar H10 chest strap. This setup minimized movement-related artifacts and gave me consistent baseline data.

How I Interpreted the Data

• A low HRV reading (compared to my personal baseline), especially when paired with an elevated resting heart rate, indicated that my system was under stress. On those days, I paused all nonessential activities and leaned into aggressive rest, hydration, and grounding strategies.
• A stable or slightly elevated HRV, when aligned with normal resting HR and no crash symptoms, suggested I could cautiously proceed with light activities like journaling, listening to a meditation, or replying to a message.

Caution: High HRV Can Be Misleading

One of the most important things I learned was that a sudden spike in HRV didn’t always mean my body was well-recovered. Sometimes, when my system was under significant strain, it would swing into parasympathetic dominanceas a form of overcompensation—a pattern common in some people with ME/CFS.

In these cases, HRV looked “excellent” on paper, but I felt heavy, foggy, and wired-but-tired. I had to learn not to treat a high HRV reading as a green light without contextual clues like:

• Symptom tracking
• Resting heart rate
• Sleep quality
• Recent physical or cognitive exertion

 

How HRV-Informed Pacing Helped Me

• Caught stress early – I could intervene before PEM set in.
• Validated rest – Data helped me pace smarter, even when I felt “fine.”
• Reduced boom-bust cycles – By proactively adjusting plans, I avoided major crashes.
• Increased confidence – HRV gave me a system for adjusting effort without relying on guesswork.
• Improved recovery windows – Over time, my crashes became shorter and less destabilizing.

Introducing Low-Dose Abilify

 There is currently no cure or FDA-approved treatment for ME/CFS, but some patients have found symptom relief through the off-label use of certain medications. One such medication is Abilify (aripiprazole)—commonly prescribed for psychiatric conditions like schizophrenia and bipolar disorder. However, when taken at very low doses, Abilify appears to work differently and may provide significant benefits for people with ME/CFS, particularly in reducing fatigue, cognitive dysfunction, and post-exertional malaise (PEM).

Abilify functions as a dopamine system stabilizer, meaning it can either increase or decrease dopamine activity depending on the brain’s needs and the dosage. Dopamine plays a critical role in motivation, mood, energy, and motor function. Research suggests that ME/CFS is associated with reduced dopamine activity, particularly in areas of the brain like the basal ganglia, which regulate motivation and movement. Low dopamine levels may also contribute to neuroinflammation, an immune response in the brain that can lead to fatigue, pain, and cognitive impairment.

At low doses—typically between 0.25 and 2.5 mg daily—Abilify may enhance dopamine signaling and reduce neuroinflammation. These effects can potentially lead to improved energy, mood, focus, and a reduction in PEM. A retrospective study from the Stanford University ME/CFS clinic found that 52% of 101 patients experienced moderate to significant improvement with low-dose Abilify, and 12% reported full remission of symptoms. ^[12]Abilify Shows Promise in Retrospective Chronic Fatigue Syndrome (ME/CFS) Study – Health Rising. https://www.healthrising.org/blog/2021/03/09/abilify-chronic-fatigue-syndrome-promise/

Based on this research and my previous experience, my ME/CFS specialist recommended I try low-dose Abilify again. I had previously noticed a boost in energy and mood while on the medication, but discontinued it due to cost and concerns about the stigma surrounding antipsychotic drugs. However, after gaining a better understanding of its unique effects at low doses and its potential to reduce PEM, I decided to give it another chance. I’m hopeful that it will help me manage my symptoms more effectively and improve my overall quality of life.

Breaking down tasks and doing them supine

One of the most effective strategies I used to avoid post-exertional malaise (PEM) and manage my energy levels with ME/CFS was breaking down tasks and performing them in a supine (lying down) position.

Breaking down tasks meant dividing even the simplest activities into smaller, manageable steps that I could complete in short bursts with rest in between. For example, instead of brushing my teeth, washing my face, and brushing my hair all at once, I did each step separately with long rest breaks—sometimes spreading them out over the entire day.

Doing tasks supine meant performing activities while lying down, which helped reduce orthostatic stress and conserve energy. This position allowed me to avoid symptoms like dizziness, shortness of breath, or fatigue that often occurred when I stayed upright too long. I brushed my teeth while lying down in bed, using an electric toothbrush that my partner brought to me along with a cup of water. I also read, wrote, or meditated while lying on my side with proper support.

This combined strategy of pacing, task simplification, and positional modification significantly improved my ability to participate in daily life without triggering PEM. Here’s how it helped me:

• Energy conservation: By breaking tasks into steps and resting between them, I prevented overexertion and stayed within my energy limits.
• Reduced orthostatic intolerance: Lying down helped me avoid dizziness, lightheadedness, and other symptoms triggered by upright activity.
• Less muscle strain and pain: Supine positioning reduced the physical stress on my muscles, which were often weak or sore.
• Improved focus and mental clarity: Focusing on one small step at a time helped reduce cognitive overload and brain fog.
• Enhanced recovery and rest: Doing activities in a restful position supported better recovery and overall well-being.
• Boosted morale: Completing small tasks gave me a sense of achievement, motivation, and control.
• Adaptability: This approach allowed me to stay engaged with daily life, even when my symptoms fluctuated.

In summary, breaking down tasks and doing them supine was a vital part of how I managed PEM and got out of rolling PEM. It allowed me to work within my body’s limitations, protect my energy, and maintain a sense of participation and dignity while living with severe ME/CFS.

Monitoring symptoms and noting signs of PEM

When I was in the thick of rolling PEM, even the smallest effort—brushing my teeth, having a short conversation, or walking across the room—could lead to a debilitating crash. I knew I had to get smarter about how I spent my energy. That’s when I started actively monitoring my symptoms during and after activity.

I tracked how I felt in real-time—not just what I was doing, but how long, how often, and how intense it was. Whether I was texting a friend, walking to the bathroom, or sitting upright for a few minutes, I paid attention to what it cost me. This helped me start identifying my true limits.

Just as importantly, I learned to spot early warning signs of PEM—like rising heart rate, brain fog, sore throat, dizziness, or that flu-like heaviness that often signaled I was about to crash. When I caught these signs early, I immediately stopped what I was doing, returned to bed, and prioritized recovery. Doing this consistently helped me reduce the severity and duration of PEM episodes.

Over time, this kind of symptom tracking became central to my pacing strategy, and it gave me real wins in my recovery:

• I planned my day around my real-time energy limits, using tools like task rotation, pre-emptive rest, and breaking tasks into micro-steps.
• I identified my PEM triggers, including certain movements, overstimulation, and cumulative effort—even things like too much conversation or thinking too hard.
• I intervened early at the first hint of trouble, which often prevented a full crash.
• I logged patterns and shared them with my medical team to fine-tune my treatment and accommodations.
• I learned how to listen to my body, not just when it was screaming, but when it whispered.
• I built pacing skills that gave me a sense of control and momentum, even while severely limited.
• I reduced the intensity of crashes, which helped me regain small pockets of stability—and from that stability, I began to build.

PEM Avoidance Toolkit

One of the most helpful resources I’ve found for managing ME/CFS is the PEM Avoidance Toolkit by the Open Medicine Foundation. This guide was developed with input from both patients and experts, and it offers practical tools for preventing and managing post-exertional malaise (PEM)—the hallmark crash that often follows even minor physical, mental, or emotional exertion. ^[13]PEM Avoidance Toolkit – Open Medicine Foundation. https://www.omf.ngo/pem-avoidance-toolkit/ Accessed 4/12/2023.

The toolkit helped me in several powerful ways:

• Understanding my limits and patterns: It helped me recognize my personal warning signs for PEM, track my symptoms and triggers, and better understand my baseline—the amount of activity I can safely handle.

• Pacing and planning with purpose: I learned to schedule my days based on energy availability, break tasks into manageable parts, and build in rest before I crash. This proactive approach helped me stay more stable and reduced my symptom flares.
• Managing everyday life with ME/CFS: From hydration and nutrition to sleep hygiene and medication tracking, the toolkit provided tips I could implement right away. These small changes added up to big differences in how I felt day to day.
• Creating an emotional support system: The toolkit encouraged me to lean on others—my partner, online support groups, and medical providers—and offered guidance on how to navigate the emotional rollercoaster of chronic illness, including isolation, grief, and guilt.
• Recovering more quickly when I do crash: I created a personalized crash recovery plan, so when PEM hit, I had a step-by-step protocol to help me rest, hydrate, medicate, and communicate what I needed—without having to make decisions in the fog of a flare.

The PEM Avoidance Toolkit didn’t cure my ME/CFS, but it gave me structure, language, and tools I didn’t have before. Most importantly, it empowered me to take action within the limitations of this illness—and that sense of agency made a world of difference.

Practicing Aggressive Rest Therapy (ART)

When I was at my sickest—bedbound, crashing from minimal exertion, and living in a state of constant post-exertional malaise (PEM)—I realized that traditional pacing wasn’t enough. I needed a more radical intervention: Aggressive Rest Therapy (ART).

ART isn’t just about “resting more.” It’s a structured, intentional practice of prioritizing complete physical, cognitive, and sensory rest as a central therapeutic intervention—especially critical for those with severe or very severe ME/CFS ^[14]Bateman Horne Center. “Activity Management and Pacing.” https://batemanhornecenter.org/activity-pacing/ ^[15]Me & More. “Aggressive Rest Therapy (ART) and Aggressive Resting.” https://www.meandmore.net/blog/aggressive-rest-therapy-art-and-aggressive-resting. Accessed April 30, 2025.. It meant removing all non-essential activity. No multitasking. No “powering through.” No “just this one thing.”

Every bit of energy was protected like gold.

What ART Looked Like for Me

• Strict horizontal rest in a dark, quiet room for most of the day, especially during flares.
• No screens, conversations, or sensory input unless I had surplus capacity.
• Intentional rest blocks, even if I felt slightly better—using timers to stay accountable.
• Minimalism in everything: minimal talking, minimal upright activity, minimal decisions.
• Pre-emptive rest before and after any activity, no matter how small (e.g., brushing teeth, texting, sitting up).
• Symptom journaling and HR tracking to avoid crossing my energy envelope.

This level of discipline felt extreme at first—but it was the only thing that started to turn the tide.

How It Helped

• It broke the PEM cycle. At my most severe, I was in a near-constant state of rolling PEM. By halting all non-essential exertion, ART gave my body the quiet conditions it needed to begin recovering, even slightly.
• It stabilized my baseline. Instead of constantly bouncing between minor upticks and deep crashes, I started to find a new “floor” where my symptoms were still intense but more predictable.
• It built energy reserves. Through sustained, high-quality rest, I began experiencing moments of clarity and capacity—moments I hadn’t felt in months.
• It taught me my true limits. ART forced me to confront how much even small tasks drained me. That awareness was painful, but essential—it helped me redefine what “pacing” meant based on lived data, not guesswork or guilt.
• It shifted my mindset. I stopped viewing rest as something passive or shameful and started treating it like a prescription. ART reframed rest as a skill—something I had to practice, refine, and honor.

While ART didn’t “cure” me, it gave me the breathing room I needed to begin healing from a state of collapse. It allowed my nervous system to quiet, my body to conserve energy, and my symptoms to become less volatile. It gave me the chance to stabilize—and from there, to slowly rebuild using other strategies.

For anyone with very severe ME/CFS, I believe ART is not just useful. It’s foundational.

Conclusion: Rebuilding From Rock Bottom

Overcoming rolling PEM wasn’t about finding a miracle cure—it was about learning how to live differently. It meant respecting my limits, tuning into my body, and accepting help when I desperately wanted to do it all myself. Every strategy I shared—pacing with a heart rate monitor, setting boundaries, delegating tasks, managing comorbidities, and more—was a piece of the puzzle.

Was it hard? Absolutely. But it gave me something I didn’t think I’d get back: a sense of stability. And from that stability, I could start rebuilding.

If you’re in the middle of a crash that feels endless, please know this: you’re not weak for needing rest. You’re not lazy for needing help. And you are not alone in this.

This illness asks a lot from us—but with the right tools, the right people, and the right mindset, it is possible to carve out space for healing.

Start where you are. Take one step. And give yourself credit for surviving what most people could never understand.

And once I found stability, something unexpected happened: I began to recover small pieces of my life.

In Part 3, I’ll share how my quality of life started to improve—what changed, what continued to challenge me, and what healing actually looked like day to day. It’s not a story of total recovery, but it is one of progress, perspective, and hard-won hope.

👉 Click here to read Part 3: How Did My Quality of Life Improve?

If you’ve made it this far, thank you for walking with me. You’re not alone—and your story doesn’t end here either.