Living with severe ME and HyperPOTS means my body doesn’t tolerate being upright — not even long enough to wash my hair over a sink. For the longest time I just… didn’t know what to do about it. Washing hair in bed sounded like something that shouldn’t be this complicated, but the actual doing of it? Couldn’t figure out how to make that happen from flat on my back.
The first time anyone actually named what was happening to me, I was at my first appointment at the Stanford ME/CFS clinic, about six months after my first COVID infection in 2020. I was working from home at the time and I told the doctor something I hadn’t really examined closely until I said it out loud: I could manage full-time work, but I was struggling with basic activities of daily living. Showering. Cooking. The ordinary stuff. I’d been triaging my energy toward work all week and then spending every weekend in bed, not relaxing, just recovering, so I could show up again on Monday. The doctor recognized it immediately. Post-exertional malaise. PEM.
This is my ME/CFS diagnosis story. It took 18 years, countless doctors, and a trail of misdiagnoses before my symptoms finally had a name.
Fall of 2007. I was back at Scripps College after a summer of pulling espresso shots just to survive — and drinking most of them myself. I’d transferred Starbucks stores so I could keep working while studying, and the free coffee was less a perk and more a lifeline. I can still smell the arabica beans, that warm roasted sweetness hanging in the air of every shift, clinging to my clothes when I got back to my dorm.
May is Lyme Disease Awareness Month. This is the story I don’t usually tell in full.
“It’s a spider bite.”
That’s what my pediatrician said when my mom brought me in with a bullseye rash after one of my camping trips. I was in 8th grade. I remember looking at the ring on my skin and thinking it didn’t look like any spider bite I’d ever seen. But he was the doctor, and I was a kid, so we went home.
That rash was textbook Lyme disease. Nobody tested. Nobody even considered it. It was the start of a Lyme disease misdiagnosis that would take years to unravel.
A step-by-step lying down shower routine for when standing isn’t an option
The first thing I notice is the warmth. Warm water running over my feet, my legs, my shoulders — all while I’m lying flat on the shower floor. My partner adjusts the handheld shower head. The bathroom is already warm from the space heater we turned on an hour ago. For the next 45 minutes, I don’t have to be anywhere. I just get to be clean.
If your body seems to overreact to everything—foods, stress, heat, even your own hormones—you might be dealing with mast cell activation syndrome (MCAS). It’s what happens when your mast cells dump histamine and other inflammatory chemicals at the wrong time, in the wrong amounts, for reasons nobody can fully explain. The symptoms can hit your skin, your gut, your brain, your heart—sometimes all at once, sometimes in rotation, sometimes for no clear reason at all.
TL;DR: I reduced my MCAS symptoms—itching, hives, flushing and more—by following a comprehensive “MCAS kitchen sink protocol” combining antihistamines, mast cell stabilizers, and supplements. This post breaks down what I used and how it helped me reclaim my life.
Living with mast cell activation syndrome (MCAS) can feel like fighting an invisible enemy. If you’re like me, you know how unpredictable and exhausting MCAS can be—flushing, itching, hives, headaches, nausea, fatigue, brain fog. It’s a condition where mast cells release inflammatory chemicals in response to common triggers like food, stress, hormones, or even mild infections.
If you’re deep in post-exertional malaise, I need you to know this: recovery is real. I’ve recovered from rolling PEM, and while it wasn’t linear or perfect, it changed everything. In this post, I’ll walk you through what life looks like after surviving the crash cycles that defined my existence for months.
For a long time, my world revolved around surviving the next crash. Each day brought its own landmine. I couldn’t plan, couldn’t hope, couldn’t even exhale — because rolling PEM was always looming. But once that cycle loosened its grip, something surprising happened: I started to come back to life.
In Part 1, I shared how I spiraled into rolling PEM. In Part 2, I walked through the pacing, heart rate monitoring, and recovery tools that helped me crawl out. Now — Part 3 — the part I wish someone had written for me when I was at my worst: what life actually looks like on the other side. The healing. The unexpected joys. The fear of relapse. The hard-won stability that slowly (and I mean slowly) returned.
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:
🚨 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:
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)].
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 managed to get 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:
I was one of the unlucky ones who developed Long Covid after contracting COVID-19 in March 2020. Long Covid is a term used to describe the persistent and debilitating symptoms that some people experience after recovering from acute-covid. Some of the common symptoms are fatigue, brain fog, shortness of breath, chest pain, and muscle aches. For me, the worst symptom was the breathing difficulty. I felt like I was constantly suffocating, and my oxygen saturation dropped with any physical activity.
Hello, and welcome to my blog. In this series, I want to share my experience with rolling PEM, how I overcame it, and how my quality of life improved.
If you are unfamiliar with the term, PEM stands for post-exertional malaise, a core symptom of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). It is a severe worsening of symptoms after physical or mental activity exceeding one’s energy limits. Rolling PEM is when you don’t recover fully after each day or crash, and the PEM accumulates gradually over time. This accumulation of PEM means you get progressively worse over months or years as you fail to recover entirely from each incidence of overactivity. [1]How Hannah Finally, Finally Learned How to Pace – and How it Helped. https://www.healthrising.org/blog/2021/03/04/hannah-pacing-heart-rate-monitoring-chronic-fatigue-syndrome/ Accessed 3/23/2023.
I know how devastating rolling PEM can be because I experienced it myself. 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 managed to get 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).
I want to inspire and encourage others struggling with rolling PEM or ME/CFS by sharing my story. Raising awareness about this condition can hopefully contribute to more research, support, and recognition for people with ME/CFS.
So, let’s get started!
You can find the other parts of this series at these links:
References
| ↑1 | How Hannah Finally, Finally Learned How to Pace – and How it Helped. https://www.healthrising.org/blog/2021/03/04/hannah-pacing-heart-rate-monitoring-chronic-fatigue-syndrome/ Accessed 3/23/2023. |
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