Blog

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. 

Why Ticked Off Codess? | A Chronic Illness Advocacy Blog by Carol

Reading Time: 6 minutes

Hello, I’m Carol, and I’m a ‘Ticked Off Codess.’ This chronic illness advocacy blog was born from years of frustration, resilience, and a refusal to stay silent. In this post, I’ll delve into what it means to be a ‘Codess’ and why I’ve got every reason to be ticked off.

Chronic illness advocacy blog — a quote by Carol of Ticked Off Codess about channeling frustration into advocacy for Lyme disease, ME/CFS, MCAS, and Long COVID
The Short Version: I'm Carol — a software engineer living with Lyme disease, ME/CFS, MCAS, and Long COVID. After years of medical dismissal, misdiagnosis, and fighting to be heard, I channeled my frustration into this chronic illness advocacy blog. Ticked Off Codess is where I share real treatment protocols, adaptive living strategies, and the unfiltered truth about navigating life with multiple complex chronic illnesses. If the medical system has ever failed you, you're in the right place.

As someone who has struggled with chronic illness most of her life, I’ve had to fight for my health in more ways than most can understand. I was raised to believe in equality and perfection. Yet, I was always treated differently because of my gender. Any disappointment was not acceptable and often met with anger from my parents.

(more…) “Why Ticked Off Codess? | A Chronic Illness Advocacy Blog by Carol”