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Lying Down Shower Routine for Severe ME/CFS & HyperPOTS

Reading Time: 9 minutes

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.

(more…) “Lying Down Shower Routine for Severe ME/CFS & HyperPOTS”

The MCAS Kitchen Sink Protocol: How I Manage Mast Cell Activation Syndrome With a Layered Treatment Approach

Reading Time: 22 minutes

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.

MCAS kitchen sink protocol illustration showing medications, supplements, and treatments for mast cell activation syndrome
Illustration of the MCAS Kitchen Sink Protocol, a comprehensive approach to managing mast cell activation syndrome using a variety of treatments including antihistamines, supplements, injectables, and mast cell stabilizers.

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.

(more…) “The MCAS Kitchen Sink Protocol: How I Manage Mast Cell Activation Syndrome With a Layered Treatment Approach”

How I Recovered from Rolling PEM: Part 3 – Quality of Life After Rolling PEM Crash Cycles

Reading Time: 12 minutes
Split-screen illustration showing a journey of recovery from rolling PEM. On the left, a woman lies in bed under the label “Rolling PEM,” representing illness and exhaustion. On the right, the same woman sits upright in a wheelchair, smiling, under the label “Life After,” symbolizing improved quality of life. Below, bold text reads: “How I Recovered from Rolling PEM – Life After Crash Cycles. Read the Blog Post.”
Visual representation of recovery from rolling PEM: from bedridden days to regaining stability and joy. Read Part 3 of the journey on the blog.

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.

Life Beyond Rolling PEM: How Recovery Felt Day by Day

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.

(more…) “How I Recovered from Rolling PEM: Part 3 – Quality of Life After Rolling PEM Crash Cycles”

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:

🚨 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)].

(more…) “How I Got Out of Rolling PEM: Part 2”

How I Escaped the Horror of Rolling PEM: Part 1

Reading Time: 9 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 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:

Part 1: My Nightmare Summer of Long COVID-Induced Rolling PEM

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.

(more…) “How I Escaped the Horror of Rolling PEM: Part 1”

How I Escaped the Horror of Rolling PEM

Reading Time: 2 minutes

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.

A woman pushing a huge boulder up a hill is a metaphor that can illustrate the challenges and struggles of living with rolling PEM. The woman represents someone with ME/CFS who has to deal with constant fatigue and pain. The boulder represents the burden of PEM that weighs them down and makes every movement difficult. The hill represents the unpredictability and variability of PEM that makes it hard to plan ahead and cope with changing symptoms. The image can also convey the sense of frustration and hopelessness that some people with ME/CFS may feel when they face rolling PEM.
A woman pushing a huge boulder up a hill is a metaphor that can illustrate the challenges and struggles of living with rolling PEM. The woman represents someone with ME/CFS who has to deal with constant fatigue and pain. The boulder represents the burden of PEM that weighs them down and makes every movement difficult. The hill represents the unpredictability and variability of PEM that makes it hard to plan ahead and cope with changing symptoms. The image can also convey the sense of frustration and hopelessness that some people with ME/CFS may feel when they face rolling PEM.

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

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.

Rolling PEM: What It Is & How to Avoid It | ME/CFS Guide

Reading Time: 8 minutes
Rolling PEM infographic showing a red wave pattern with overlapping cycles, illustrating how post-exertional malaise can be triggered frequently, causing new PEM cycles to begin before prior cycles have ended. By @TickedOffCodess.

If you have ME/CFS or Long COVID, you may be familiar with the term post-exertional malaise (PEM), which refers to the worsening of symptoms after physical or mental activity that would not have caused a problem before illness. [1]Symptoms of ME/CFS | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome …. https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html Accessed 3/19/2023. PEM can last for days, weeks, or longer and can affect any aspect of your health, such as fatigue, pain, sleep, cognition, mood, and more. [2]ME Association. 2021. “Symptoms: Post‐Exertional Malaise (PEM).” ME Association. Last modified November 3, 2021. … Continue reading

If you developed PEM after COVID-19, rolling PEM can be especially tricky to recognize because you may still be learning what your new limits are. The declining baseline might be mistaken for “still recovering from COVID” rather than a pattern of cumulative overexertion.

What is Rolling PEM?

But did you know that there is another type of PEM that can be even more harmful? It’s called rolling PEM and it occurs when you don’t recover fully after each day or crash and the PEM accumulates gradually over time. [3]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 3/19/2023. This means that you get progressively worse over months or years as you fail to recover completely from each incidence of overactivity.

(more…) “Rolling PEM: What It Is & How to Avoid It | ME/CFS Guide”

References

References
↑1 Symptoms of ME/CFS | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome …. https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html Accessed 3/19/2023.
↑2 ME Association. 2021. “Symptoms: Post‐Exertional Malaise (PEM).” ME Association. Last modified November 3, 2021. https://meassociation.org.uk/medical-matters/items/symptoms-post-exertional-malaise-pem/ .
↑3 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 3/19/2023.

Sensory Overload

Reading Time: 2 minutes

Carol laying on pillow and wearing dark sunglasses and noise canceling headphones.
I spent half of June and half of July living in sensory overload.

This is an excerpt from an IG post I wanted to share in June 2021 that I never got around to posting.

⚠️ ⚠️ This is sensory overload!!!!!

Out of the 8 senses, 2 of them are acting up, and 3 of them are overloaded.

It has been 43 days since my sense of smell and taste began acting up. Smells and tastes come and go. They can be working fine & two hours later they go off grid. Or sometimes yummy things taste like fish.

My sense of sight, sound, & touch are through the roof! I’ve experienced sensory overload for a large chunk of my life, but this is sensory overload on STEROIDS.

I’m spending all day in a quiet, dark room with eyemask/sunglasses and noise canceling headphones. Any little touch or vibration of my bed sends my body into fight or flight.

I went downstairs to work on my pills, but the sound of the TV was too overwhelming. Despite wearing noise canceling headphones it felt like my head was inside a pinball machine. With every little 🛎 ding blasting in my ears.

This is Dysautonomia. My nervous system is unbalanced and right now the sympathetic system is dominating.

The autonomic nervous system is in charge of processing stimuli, and Dysautonomia has messed up the body’s ability to process the world around me from noises, temperatures, lights, smells, tastes, and touches.

The last time my sensory overload was this horrible was during/after Super Bowl Sunday when my body was battling a Covid re-infection.

I’m feeling trapped, and doing what I can to stay away from triggers until my sympathetic nervous system is more stable.

With aggressive rest and pacing with a heart rate monitor, I was able to stabilize the sensory overload. In hindsight, the extreme sensory overload was due to rolling crashes. I had been in a perpetual crash since August 2020.

Long Covid: Frightening Nightmares IRL

Reading Time: 4 minutes

Thanks to Long Covid, I’m reliving parts of my worst living nightmares: the nightmares of living with untreated Lyme disease and co-infections and the agony of my concussions all over again.

Obscure and low visibility image of person. The text on the image reads: “Long Covid presents NIGHTMARES IN REAL LIFE.. neurological symptoms similar to post concussion syndrome and neurological Lyme”

The similarities between Long Covid, late-stage neurological Lyme, and post-concussion syndrome are uncanny. Add breathing difficulties on top of neurological symptoms, and everything seems compounded.

I keep telling myself, these symptoms should feel more manageable this time around because I’ve had them before. But they feel much more challenging – I don’t have school or work to distract me from these terrifying symptoms. There’s no escaping them.

(more…) “Long Covid: Frightening Nightmares IRL”

Nondisabled Privilege

Reading Time: 3 minutes

I knew I was privileged when I got accepted into college and received a full 4-year scholarship. It takes plenty of privilege to succeed in high school, and it takes even more, to graduate from college.

I’ve lived a privileged life, no doubt about it. But you see, some of that privilege came tumbling down as my health issues interfered with my daily life and higher education pursuits.

I was denied the privilege granted to those who are nondisabled or without a chronic illness.

alt=There is privilege in pursuing higher education, but there is greater privilege in pursuing it without a disability or chronic illness.

Within the matter of first 2 months of school, I developed a sinus infection, then the flu, which led to bronchitis on top of my ongoing medical conditions.

I was drowning in health issues and sickness, and begging my professors for a life vest. Most professors were understanding and accommodating.

There was one professor who consistently questioned and invalidated my experiences.

Her ableist views influenced how little leeway she was willing to give me.

Her ableist views based on knowing someone with Celiac disease and her own personal experience with an incurable illness dictated how she treated me.

I felt ashamed for being unable to push through my health problems as she had done; I felt inferior, begging for accommodations from her.

I needed accommodations. And I naively thought I could be open to my professor about my health struggles.

Interactions with this #AbleistEducator either after class or during office hours centered on her saying dismissive things about my symptoms. I couldn’t possibly be experiencing the symptoms I described from Celiac disease. I couldn’t possibly be as sick as I described; I didn’t look sick after all. 

I requested flexibility in her attendance policy.

I had documented chronic health problems: chronic and episodic symptoms, which caused difficulties with regular class attendance and completing work.

I was still completing all my coursework even though I was having trouble attending class and meeting deadlines.

This professor made me feel that my chronic illness detrimentally threatened the integrity of her course. I don’t think she ever considered how my chronic conditions threatened my dignity and wellbeing.

Swipe to see some of the correspondence between this #AbleistEducator and me.

Swipe to see how I poured it all out for my professor in the last email and never heard back from her.

I wasn’t begging for a grade I didn’t deserve; I was simply begging for accommodation.

Even while I experienced the privilege of pursuing higher education, I was denied the privilege granted to those who are nondisabled. 

As Allan G Johnson points out in Privilege, Power, and Difference: 

  • “Nondisabled people don’t have to worry about their disability status being used against them when trying to fit in at work or whether teammates will feel comfortable working with them”
  • “Nondisabled people can assume that they will fit in at work and in other settings without having to worry about being evaluated and judged according to preconceived notions and stereotypes about people with disabilities”
  • “Nondisabled people are more likely [..] to be given a second chance when they fail, and to be allowed to treat failure as a learning experience rather than as an indication of who they are”

Nondisabled students and students without a chronic illness don’t have to worry about proving a disability or their chronic illness to their professors. 

Nondisabled students and students without a chronic illness don’t have to deal with the exhaustion of disability or chronic illness. 

So you see, there is a far greater privilege to pursuing higher education without a disability or chronic illness.