How I Got Out of Rolling PEM: Part 2

Reading Time: 34 minutes

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?

🚨 If You’re in Rolling PEM Right Now

I know what it’s like to be in the thick of it—too sick to think straight, too crashed to plan, too exhausted to read a 34-minute blog post. If that’s you right now, you don’t need to read this whole thing. Start here:

1. Practicing Aggressive Rest Therapy (ART) — The single most important thing I did. Stop everything nonessential and rest like it’s your job.
2. Asking for Help and Delegating Tasks — You cannot pace your way out of rolling PEM alone. Let someone else carry what you can’t.
3. Breaking Down Tasks and Doing Them Supine — When you do need to do something, this is how to do it without crashing harder.
4. Pacing with a Heart Rate Monitor — Your body can’t tell you the truth right now. A monitor can.
5. Monitoring Symptoms and Noting Signs of PEM — Learn to catch a crash before it catches you.

Bookmark this page and come back to the rest when you’re ready. It’ll be here. 💛

Have a caregiver or partner? Share this guide with them: [Caregiver Guide (PDF)].

What You’ll Find in This Post

Getting out of rolling PEM wasn’t one thing—it was a combination of strategies layered on top of each other over several months. If I had to name what made the biggest difference, it would be three shifts: committing to Aggressive Rest Therapy as a non-negotiable foundation, using a heart rate monitor to pace by data instead of guesswork, and finally getting my comorbidities (especially Hyper POTS and MCAS) under enough control that my body could actually benefit from rest. Everything else I share here—setting boundaries, tracking HRV, breaking down tasks, using mobility aids—built on top of those three pillars. You don’t have to read this post start to finish. Use the Table of Contents below to jump to whatever feels most relevant to where you are right now.

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.

A Note Before We Begin

Before I share what helped me, I want to be honest about something: I had advantages that not everyone has. I have a loving, understanding partner who stepped up in ways that made pacing possible. I don’t face the financial pressure of needing to work through crashes. I live in a quiet, accessible home. These aren’t things I earned—they’re circumstances I’m deeply grateful for, and I know they made strategies like aggressive rest and delegation realistic for me in ways they aren’t for everyone.

I also want to name the barriers that make pacing difficult or impossible for many people with ME/CFS: lack of support from people who believe you, lack of income or financial stability, and lack of accessible environments. These are structural problems, not personal failures, and they deserve far more attention than they get.

Your Mileage May Vary. ME/CFS is not one-size-fits-all. What helped me may not help you, and what worked for my body may not be safe or accessible for yours. Please treat this post as a story, not a prescription, and work with a medical provider before making changes to your care plan.

Disclaimer: I am not a medical professional. The content of this blog is based on my personal experience and self-directed research. Nothing here should be interpreted as medical advice, diagnosis, or treatment. Use of this information is at your own risk. Full disclaimer at the bottom of this post.

I share my story because I believe lived experience matters. If you can pace, I hope this helps you refine your strategy. If you can’t, I see you—and I’m writing this in solidarity with you, too. 💛

For more on the privileges and structural barriers I’m acknowledging here, read my full reflections on pacing access and equity →

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.

If you have a caregiver or partner who wants to help but isn’t sure how, I created a two-page guide you can share with them: [Download the Caregiver Guide (PDF)].

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

For months, I had one explanation for everything wrong with my body: ME/CFS. The dizziness, the gut problems, the pain that migrated without warning, the sleep that never restored me—all filed under the same diagnosis. One enemy. One explanation. It was simpler that way.

Then I saw my heart rate data and realized my resting heart rate was spiking 60-plus beats per minute just from sitting up—and I understood that I wasn’t fighting one condition. I was fighting a dozen, stacked on top of each other, each making the others worse.

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.

There was a period when I genuinely believed ME/CFS was responsible for everything happening in my body. Every new symptom—the dizziness, the gut problems, the pain that moved around like it had its own agenda—I filed under “ME/CFS is getting worse.” And in a way, that made things simpler. One enemy. One explanation.

But then something happened that cracked that story open. I’d been tracking my heart rate with the Polar H10, and I noticed my resting heart rate was spiking 60-plus beats per minute just from sitting up. Not walking. Not standing. Sitting. I showed the data to my electrophysiologist, and she confirmed what the numbers were screaming: my Hyperadrenergic POTS was nowhere near controlled.

That was the moment I realized I wasn’t fighting one thing—I was fighting a dozen things stacked on top of each other, and they were all making each other worse. The POTS was spiking my heart rate, which was burning through energy, which was triggering PEM, which was worsening my MCAS, which was driving inflammation, which was disrupting my sleep, which was making everything harder to tolerate. It was a cascade, and ME/CFS was at the center of it—but it wasn’t the only player.

Once I started treating the comorbidities as separate conditions that deserved their own attention—not just as “more ME/CFS symptoms”—things began to shift. Not overnight. Not dramatically. But the constant noise in my body got a little quieter, and for the first time in months, I could hear what my body actually needed underneath all that chaos.

---

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. My MCAS Kitchen Sink Protocol is one example of how this layered approach works in practice.

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. For a full breakdown of the layered approach I use, see my post on the MCAS Kitchen Sink Protocol.

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 mobility and accessibility aids specifically helped me:

• Reducing orthostatic strain: Unlike other pacing strategies that manage how much I do, mobility aids changed how my body was positioned while doing it. A transport chair meant I could get to the bathroom without my heart rate spiking from standing and walking. A cushioned bath mat let me shower lying down. These weren’t just energy-savers—they removed the orthostatic trigger entirely.
• Preventing falls and injury: With presyncope and syncope happening regularly, safety became as important as energy conservation. Grab bars, anti-slip mats, and the transport chair meant I wasn’t risking a fall every time I moved.
• Preserving dignity and autonomy: This is the part that doesn’t show up on a heart rate graph. Being able to brush my teeth, eat a meal, or get clean—even in adapted ways—meant I was still participating in my own life. A lap desk repurposed as a food tray, an electric toothbrush used lying in bed—these small modifications kept me from losing myself entirely to the illness.
• Making caregiving sustainable for my partner: Aids didn’t just help me—they made it easier for my partner to help me safely. A transport chair is easier to push than supporting someone’s full weight. These tools protected both of us.

💡 Like every strategy in this post, mobility aids helped me conserve energy and reduce my risk of PEM. What made them distinct was how they addressed the physical and safety barriers that other pacing strategies couldn’t.

 

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

I almost pushed through on a day that would have cost me a week — because my data told me I was fine.

That morning, my Oura Ring showed an HRV reading well above my recent baseline. On paper, it looked like my best recovery night in weeks. But my body told a different story: heavy, foggy, wired-but-tired. I chose to trust my body over the number, and by evening it was clear I’d narrowly avoided a serious crash.

That experience changed how I use Heart Rate Variability — and it’s why I want to share both the power and the pitfalls of HRV-informed pacing.

For anyone unfamiliar, HRV measures the variation in time between heartbeats. It’s essentially a window into your autonomic nervous system — how balanced your “fight or flight” and “rest and digest” responses are at any given moment. For someone like me, living with Hyperadrenergic POTS layered on top of ME/CFS, my nervous system almost always defaulted to high alert. HRV gave me objective feedback on how strained or recovered my system was, which meant I could adjust my pacing before a crash hit — not after.

How I Tracked It

I used different tools for different windows of data. Overnight, I wore an Oura Ring and used SweetBeatHRV to see how my body recovered (or didn’t) while I slept. In the morning, before I moved or did anything, I’d take a reading with Elite HRV or HRV4Training paired with my Polar H10 chest strap. Lying completely still with the chest strap gave me the cleanest, most consistent numbers — and consistency mattered more than any single reading.

What the Numbers Told Me

Over time, I learned to read my HRV the way you learn to read weather patterns — not as a single forecast, but as a trend.

When my HRV was low compared to my personal baseline and my resting heart rate was creeping up, I knew my system was under stress. Those days were non-negotiable rest days. I paused everything, leaned into aggressive rest, hydrated, and did grounding exercises. No exceptions — because I’d learned what happened when I ignored those signals.

When my HRV was stable or slightly higher than usual, and my resting heart rate looked normal, and I wasn’t feeling crash symptoms — then I could cautiously do something small. Maybe journal for a few minutes. Maybe listen to a short meditation. Maybe reply to one message. Nothing ambitious. Just one small thing, and then I’d check in with myself again.

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 dominance as a form of overcompensation—a pattern common in some people with ME/CFS.

I remember the morning it clicked. I checked my Oura Ring data and saw an HRV reading that was significantly higher than my recent average. On paper, it looked like my best recovery night in weeks. I felt a surge of hope—maybe today I could sit up a little longer, maybe reply to a few messages, maybe even listen to a podcast.

But something felt off. My body was heavy in a way that didn’t match the numbers. My thinking was slow and thick, like wading through fog. I was wired but exhausted—that specific combination that I’d learned to dread.

I almost ignored it. The data said I was recovering. My body said otherwise.

That day, I chose to trust my body. I stayed horizontal, kept the room dark, and did nothing. By evening, the heaviness had deepened into what would have been the start of a crash—except I’d caught it. If I’d trusted the number and pushed through, I would have lost days.

That experience taught me something I now consider essential: HRV is a tool, not a verdict. A high reading can mean genuine recovery—or it can mean your nervous system is overcompensating, swinging into parasympathetic dominance under stress. I learned to never read HRV in isolation. I always cross-reference it with my resting heart rate, my sleep quality, my symptom load, and honestly, how I feel when I first open my eyes. The number is one voice in the conversation. My body gets the final word.

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

I want to be upfront about this one: when my ME specialist first suggested I try low-dose Abilify, I hesitated. Abilify is an antipsychotic medication, and the stigma around that label was hard to get past. I’d actually been on it before and noticed improvements in my energy and mood, but I’d stopped — partly because of cost, and partly because I didn’t want to be on “that kind” of medication.

But my specialist explained something that changed how I thought about it. At the doses typically prescribed for psychiatric conditions, Abilify works one way. At very low doses — between 0.25 and 2.5 mg daily — it appears to do something quite different. It acts as a dopamine system stabilizer, meaning it can nudge dopamine activity up or down depending on what the brain needs. And dopamine matters a lot in ME/CFS: it drives motivation, energy, mood, and motor function, and research suggests that people with ME/CFS may have reduced dopamine activity, particularly in brain regions that regulate motivation and movement. Low dopamine levels may also contribute to neuroinflammation — the kind of immune response in the brain that fuels fatigue, pain, and cognitive impairment.

That clicked for me. It wasn’t about treating a psychiatric condition. It was about addressing a neurological one.

The research backed this up. A retrospective study from Stanford’s 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/

So I went back on it. My specialist started me at 0.25 mg daily, which we later adjusted to 1.5 mg. I’m hopeful it will help reduce my PEM and improve my overall quality of life — and this time, I’m not letting stigma make that decision for me.

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.

Breaking down tasks and doing them supine helped me in ways that overlapped with other strategies in this post—conserving energy, reducing orthostatic stress, and supporting recovery. But what made this approach uniquely powerful was how it changed my relationship with daily life:

• It made the impossible feel possible again. When I couldn’t brush my teeth, wash my face, and brush my hair in one go, breaking them into separate steps with rest in between meant I could still do all three—just not at once. That shift in thinking was everything.
• It reduced cognitive overload. Focusing on one micro-step at a time instead of an entire task cut through the brain fog. I wasn’t trying to plan a sequence—I was just doing the next small thing.
• It gave me back a sense of accomplishment. Completing even one step—brushing my teeth while lying in bed—was a small win. Those small wins accumulated into something that looked like a life, even at my most severe.
• It was endlessly adaptable. On worse days, I broke tasks into even tinier steps or skipped some entirely. On slightly better days, I could combine two steps. The framework flexed with me instead of setting me up to fail.

---

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.

Symptom monitoring shared a foundation with every other strategy in this post—it helped me pace better and crash less. But what it added that nothing else could was pattern recognition:

• I found my hidden triggers. Some were obvious (walking to the bathroom). Others surprised me—too much conversation, thinking too hard about a problem, even certain sounds. Without tracking, I never would have connected those dots.
• I learned my body’s early warning language. A rising heart rate, a sore throat, that specific flu-like heaviness—these became signals I could act on before a full crash developed. Over time, I got faster at reading them.
• I created a shared language with my care team. Logged patterns gave my doctors something concrete to work with. Instead of “I feel awful all the time,” I could say “cognitive activity over 15 minutes consistently triggers a crash 2–4 hours later.” That specificity changed how they treated me.
• I learned the difference between “feeling okay” and “being okay.” Some of my worst crashes came after periods where I felt deceptively fine. Tracking showed me that feeling okay in the moment didn’t mean I had capacity to spare—it sometimes meant I was in the eye of the storm.

---

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)

I need to be upfront about something: Aggressive Rest Therapy was the hardest thing I did in my entire recovery—harder than any medication adjustment, harder than setting boundaries with my family, harder than accepting a bedside commode. Not because it was physically demanding. Because it asked me to do nothing, completely and deliberately, for months. And for someone who spent her life fixing, managing, and pushing through, nothing was the most radical act imaginable.

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.

I want to paint an honest picture of what ART looked like in practice, because “strict horizontal rest in a dark, quiet room” can sound almost peaceful from the outside. It wasn’t. It was some of the hardest, most boring, most emotionally grueling work I’ve ever done.
A typical day during my most aggressive ART phase looked something like this:

I’d wake up—or rather, I’d become aware that I was awake, because I kept the room dark enough that there was no real difference between night and morning. I wouldn’t reach for my phone. I wouldn’t sit up. I’d lie still and do a body scan, slowly checking in with each part of my body to see where I was that day.

After maybe 30 minutes of stillness, my partner would bring me water and my morning medications. I’d take them lying down. Then I’d begin my Yoga Nidra practice—about 90 minutes of guided meditation, eyes closed, completely still. This was my anchor. It gave the first hours of my day a structure that wasn’t about doing, but about being.

Meals were brought to me. I ate lying on my side or slightly propped. No conversation during eating—just fuel.

The afternoons were the hardest. Not because of pain, though there was plenty. The hardest part was the nothingness. No scrolling, no texting, no audiobooks on bad days. Just me, the dark, and my thoughts. I’d do another body scan. Sometimes I’d practice Metta meditation. Sometimes I just lay there and let time pass.

On a “good” ART day, I might send one or two short text messages, or my partner might read me a few lines from something. On a bad day, even that was too much.

Evening was medications, maybe a very gentle conversation with my partner—five minutes, no more—and then the long stretch toward sleep, which was its own battle with insomnia, adrenaline surges, and restless legs.

That was it. That was the whole day. And I did some version of that for months.

It sounds miserable, and some days it was. But here’s what I want you to understand: inside that stillness, something was happening. My nervous system was quieting. My crash cycles were lengthening. The floor beneath me was slowly, imperceptibly, becoming more solid. ART didn’t feel like healing while I was in it. It felt like survival. But looking back, it was the foundation everything else was built on.

---

ART shared core benefits with every other strategy I’ve described: it conserved energy, reduced crashes, and supported recovery. But ART did something the other strategies couldn’t do on their own—it created the conditions for everything else to work:

• It broke the PEM cycle when nothing else could. At my most severe, I was crashing from crashing. Pacing adjustments, mobility aids, and delegation all helped—but I was still in rolling PEM until I committed to the radical stillness of ART. It was the circuit breaker.
• It revealed my actual baseline. When I stripped away all nonessential activity, I could finally see how little capacity I truly had. That was painful to confront, but it was the truth I needed. Every other pacing decision I made afterward was built on that honest foundation.
• It reframed rest as a skill, not a failure. This was the mindset shift that changed everything. I stopped viewing rest as what I did when I couldn’t do anything else, and started treating it as the most important thing I could do. ART taught me that rest isn’t passive—it’s a practice that requires discipline, intention, and self-respect.

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

There wasn’t a single dramatic moment when I realized I was no longer in rolling PEM. It wasn’t like waking up one morning and feeling better. It was more like realizing, sometime in the middle of an ordinary afternoon, that I couldn’t remember the last time I’d crashed for days straight. That the floor beneath me had stopped shifting. That I’d had three weeks — maybe four — of something I hadn’t felt in months: stability.

It crept in so gradually that I almost missed it. One week, I noticed I could brush my teeth two nights in a row without paying for it the next day. Another week, I managed a short conversation with my partner that didn’t leave me flattened. Small things. Ordinary things. The kind of things that used to be invisible because they cost me nothing — and had become extraordinary because they once cost me everything.

Getting here wasn’t about finding a miracle. It was about doing a dozen unglamorous things, consistently, for months. Committing to aggressive rest even when it felt like nothing was happening. Wearing the chest strap. Setting the boundary. Asking for the help. Tracking the symptom. Taking the medication. Lying in the dark when every part of me wanted to be somewhere else, doing something — anything — that felt like living.

None of it was easy. All of it mattered.

If you’re in the middle of a crash that feels like it will never end, I want you to hear this: you are not weak for needing rest. You are not lazy for needing help. You are not broken for needing a strategy just to brush your teeth. You are surviving something that most people will never understand — and the fact that you’re reading this, however slowly, however many breaks it took, means you haven’t given up.

Start where you are. Do one thing. Give yourself credit for still being here.

And when you’re ready, I’ll be in Part 3 — where I’ll share what happened next. How small pockets of stability turned into something that started to look like a life again. It’s not a story of total recovery. But it is a story 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. 💛

For caregivers and partners: [Download the two-page Caregiver Guide (PDF)].