Chronic Illness Advocacy & Adaptive Living with ME/CFS, MCAS & Long Covid
Finding hope in the midst of ambiguity, uncertainty, and illness.
Hi, I’m Carol — the Ticked Off Codess. I live with multiple complex conditions including HyperPOTS, Dysautonomia, ME/CFS, and Long Covid. Life with chronic illness is unpredictable and often overwhelming, but I’m still here — trying, failing, falling down, and getting back up again. This blog is my space to share what it means to live with courage, persistence, and a little bit of (well-earned) rage.
What You’ll Find Here
Ticked Off Codess is a chronic illness advocacy blog sharing real, experience-driven content about living with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), Mast Cell Activation Syndrome (MCAS), HyperPOTS, Dysautonomia, and Long Covid. From detailed treatment protocols like the MCAS Kitchen Sink Protocol to practical guides for adaptive daily living — including how to shower while bedbound — this blog documents the messy, complicated reality of navigating complex chronic conditions.
Whether you’re newly diagnosed, deep in a rolling PEM cycle, or supporting someone who is, you’ll find honest stories, evidence-informed strategies, and a community that understands. Topics include post-exertional malaise (PEM) management, heart rate pacing, energy envelope tracking, caregiver coordination, and home environment adaptations.
Musings
Receiving a new diagnosis can be overwhelming — and navigating life afterward even more so. Over the years, writing these musings has helped me process, persevere, and find the strength to keep going. By sharing both the light and the dark moments honestly, I hope to offer a sense of connection and remind others that they’re not alone in their journey.
Awareness
I’ve become a statistic — but others shouldn’t have to. Early education and awareness are vital in the fight against tick-borne diseases, Infection-Associated Chronic Conditions (IACCs), and the systemic failures that lead to delayed or inadequate diagnoses. By shining a light on these issues, we can help others avoid the same fate — and push for change.
Research
Knowledge is power — especially when living with tick-borne infections and chronic illness. Staying informed and digging into the research has been essential to understanding my conditions and reclaiming some control over my health.
Blog
- How I Shower Lying Down with Severe ME and HyperPOTS
Reading Time: 8 minutesA 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… Read more: How I Shower Lying Down with Severe ME and HyperPOTS - MCAS Kitchen Sink Protocol: How I Manage Mast Cell Activation Symptoms
Reading Time: 19 minutesTL;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… Read more: MCAS Kitchen Sink Protocol: How I Manage Mast Cell Activation Symptoms - How I Recovered from Rolling PEM: Part 3 – Quality of Life After Rolling PEM Crash Cycles
Reading Time: 8 minutesDiscover what life looks like after I recovered from rolling PEM. From pain reduction to cognitive clarity, Part 3 of my recovery story reveals how I reclaimed stability and joy.
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