I’ve lived with this illness for over 30 years, and for most of that time I was ashamed of it.
Doctors kept telling me it was all in my head.
They said I was depressed, anxious, or that I just didn’t want to work hard enough. They usually prescribed antidepressants and anti-anxiety medications, claiming these drugs would fix me. While the medication may have helped my emotional state somewhat, it did nothing to fix the physical symptoms.
Thankfully, I eventually stopped letting them gaslight me into taking more and different medications.
Every time I tried to explain how my body would completely crash after doing normal things, I was met with skepticism or pity.
So I started doubting myself.
I felt weak. I felt crazy. I carried a lot of shame for something I couldn’t control.
The fatigue and exhaustion that comes with this illness is crushing.
It’s not normal tiredness. It’s a deep, heavy exhaustion that sleep doesn’t fix. Even the smallest activities can leave me completely wiped out for days.
My sleep tracker consistently shows that I get adequate deep sleep and REM sleep, yet I still wake up exhausted. That helped me understand something important:
The problem isn’t simply how much I sleep.
It’s that my dysautonomia prevents the sleep from being restorative.
In the early years, the emotional side of it felt a lot like PMS — that same sudden emotional dysregulation, irritability, and feeling completely off — except instead of happening once a month, it could hit at any time.
Only recently have I finally understood what’s really happening.
What I have is dysautonomia.
My autonomic nervous system doesn’t regulate properly anymore.
That’s why I can suddenly feel freezing cold in a warm room. That’s why I’m much more comfortable lying down than sitting or standing. And that’s why even mild activity can make my whole system short-circuit — suddenly bringing on intense brain fog, overwhelming exhaustion, headaches, insomnia, anxiety, and sometimes depression all at once.
ME/CFS always felt like an incomplete label to me.
Yes, I crash after exertion. Yes, sleep doesn’t fix it. Yes, my body has never functioned the way people expect it to.
But understanding it as dysautonomia finally explains the day-to-day reality of living in a body whose nervous system breaks down so easily.
The only thing that actually helps is pacing — staying within my energy envelope.
I try to live as close to the edge as I can, but carefully. Migraines and tinnitus have become warning signs for me. If I respect those early signals, I can often avoid triggering insomnia, which is far worse than a regular crash and completely throws me off balance.
After 30 years, I’ve finally stopped blaming myself.
That alone has been healing.
I’m sharing this journal entry in case it gives someone else a little more language for their own experience.
And for family members, friends, and doctors: please know that when we keep turning down invitations, or seem withdrawn, or disappear for long stretches of time, it’s not because we don’t want to be around you.
Our energy is extremely limited.
We have to be very careful to avoid crashes.
Even now, I keep a little journal between doctor visits so I can clearly communicate what I’ve been experiencing. If you’re struggling to explain this illness during appointments, writing things down and bringing it with you can be incredibly helpful.
Sometimes understanding does not cure the body.
But it can begin to release the shame.
And after so many years of being misunderstood, that matters.
For those living with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), Long COVID, or any energy-limiting illness, daily life can feel like an obstacle course without a map. Simple tasks become monumental. Rest becomes survival. And advice from the outside world often misses the mark entirely.
In response to this, I’ve been quietly building something—a digital companion rooted not in theory, but in lived experience:
The ME/CFS Wellness Companion
A gentle, AI-powered guide designed specifically to support those navigating life with post-viral illness.
What Is It?
The Wellness Companion is a customized GPT (Generative AI) model, trained not on generic health advice, but on real-life tools, practices, recipes, and reflections from my living with ME/CFS for over 30 years.
It doesn’t tell you to “push through.” It won’t ask you to “exercise more.” It does ask: “Are you in the RED, YELLOW, or GREEN today?”
The Energy Color System
This is the foundation of the Companion’s guidance:
RED Zone: Deep fatigue, post-exertional malaise, sensory overwhelm. The focus is full rest, breath, stillness, and nervous system support.
YELLOW Zone: Fragile stability. Gentle movement, light nourishment, and mindful pacing are encouraged—with regular check-ins.
GREEN Zone: A rare or improved state of function. Still careful, but open to creativity, light structure, or small projects.
Every recommendation is tailored to your zone—so you’re never being pushed beyond your limits.
What It Offers:
Energy-aware routines for morning, afternoon, and evening
Healing recipes (like mineral-rich bone broth or keto recovery popsicles)
Guided meditations, breathwork, and gentle restorative yoga suggestions
Nervous system support tools for crashes and anxiety
Seasonal adaptations for food and rest
Compassionate check-ins to help you listen to your body
Everything inside the companion has been tested, lived, and adjusted with care.
Why I’m Sharing This
Though this GPT was originally shaped from my own experience, it’s not just for me. It’s for all of us—those whose lives have been reshaped by chronic illness, who often feel invisible or misunderstood.
My Sankalpa (sacred intention) is to pass forward what has helped me, so others don’t have to start from scratch.
How It Will Work
The model is still in development. Eventually, it will be uploaded with a full file of routines, recipes, pacing guidance, and reflective practices.
When it’s ready, anyone will be able to open the Wellness Companion GPT and:
Share how they’re feeling
Receive suggestions matched to their energy level
Be reminded of pacing, nourishment, and kindness
Rest in the quiet company of something that understands
Would You Like to Help?
If you have ideas, routines, tools, or practices that have supported you on your journey with ME/CFS, I’d love to hear from you. This is a living, growing project, and your voice could shape how the Wellness Companion serves others.
Please feel free to reach out or leave a comment below. I’ll continue posting updates as the project unfolds.
As we shape this Wellness Companion—may it always serve the highest good.
May those who seek healing be met with gentleness. May those who carry invisible burdens find rest. May those who offer their wisdom help light the path. And may this work—rooted in care— help bring us closer to a world where technology honors tenderness, and presence becomes medicine.
Discover how Amazon, YouTube, and digital tools bring connection, learning, and convenience to those managing Chronic Fatigue Syndrome (ME/CFS) and other chronic conditions.
Living with Chronic Fatigue Syndrome (ME/CFS) is like existing within the quiet spaces between life’s rhythms. The world continues to spin, time flows forward, but for those of us confined by fatigue, much of life happens from a single room. Yet even from here, in the isolation of illness, modern technology keeps me tethered to the world—connected, informed, and able to navigate life more easily than I could have ever imagined. Through screens, deliveries, quiet YouTube voices, and the reassuring buzz of text messages, these tools, which for most people are conveniences, have become essential to my daily life, allowing me to “connect, learn, and thrive in the quiet spaces of illness.”
From the stillness of my room, technology provides a connection to the outside world, bringing not only convenience but the comfort of knowing I am still part of a larger community. Tools like Amazon, YouTube, and GPS apps, often viewed as simple conveniences, are for me much-needed companions on this journey with chronic illness—supporting a life enriched by connection, even from within the solitude of illness.
Amazon: Freedom Through Next-Day Delivery
For me, Amazon is not a luxury; it’s a lifeline. Before fatigue claimed my body, I could walk through stores, touch things, browse the shelves. Now, just the thought of leaving my home to do simple tasks is overwhelming. Amazon Prime brings the world to my doorstep—groceries, medical supplies, non-perishable food, even a replacement part for my air conditioner when it broke down. In a life where energy is a precious and limited resource, Amazon’s next-day deliveries allow me to conserve what little energy I have for more meaningful pursuits.
There are no long checkout lines, no need to explain to a cashier why I can’t stand for more than a few minutes, and no risk of overexerting myself by pushing through crowds. In this way, Amazon brings me peace of mind. I get the things I need, when I need them, and I don’t have to venture out into a world that often feels too large, too demanding, and too exhausting.
Amazon Prime’s next-day delivery has become my bridge to the outside world. For someone who must guard every ounce of energy, this service isn’t just convenient—it’s necessary. For others in similar situations, I’d encourage finding ways to use Amazon’s features to make life easier: think grocery deliveries, automatic reorder settings, or exploring Prime’s accessible resources for those homebound.
YouTube: A Window to the World
YouTube is where I go to learn, to be entertained, and to explore the world beyond my room. Some days, when my body is too fatigued to move, I can escape into a world of endless discovery, music, art and more.
While YouTube offers boundless exploration—from history and technology to the personal stories of others facing challenges—I’ve learned to pace myself here, too. Information overload can be an unexpected trigger for ME/CFS symptoms, so knowing when to close the app and find stillness is as essential as any other pacing technique.
Through YouTube, I immerse myself in history, music, documentaries, and biographies. I explore the world, both past and present, and even learn about future technologies. It’s an incredible tool that connects me to culture, ideas, and information I wouldn’t otherwise have access to. Whether it’s understanding ancient civilizations, learning about scientific breakthroughs, or following someone’s personal journey with illness, I find comfort in knowing that the world is still out there, alive and vibrant, even if I am not actively participating in it.
Yet, I must admit, there are times when I become overwhelmed. Information overload is a real challenge when you live with ME/CFS, so I’ve learned to recognize when it’s time to turn off YouTube, close the apps, and retreat into the quiet of my mind. It’s about balance—allowing myself to be informed and connected, but also knowing when to rest from the constant influx of information.
One other helpful trick is that I’ve learned how to Velcro my iPad to the ceiling, about a foot and a half above my head, so that even when lying flat on my back, I can watch videos, answer text messages and enjoy creative writing without straining my body. This idea was inspired by astronauts living on the International Space Station, a video I stumbled upon while exploring YouTube. They live in such small spaces, with everything within reach, Velcroed to the walls for easy access—and now I do the same. It’s so helpful!
Text Messaging: Simple Connections Without the Overwhelm
One of the simplest, yet most effective, tools in my daily life is text messaging on my Samsung A51. For someone living with chronic illness, conserving energy is vital, and sometimes even scrolling through endless emails or social media updates can be exhausting. There’s just too much content, too much spam, too much input to sift through.
Texting allows me to keep in touch with the people who matter without all the distractions. I’ve personalized my notifications so I can immediately tell who’s reaching out, without having to wade through spam or unwanted information. This focused communication helps me stay connected without overwhelming myself. It’s small, it’s simple, and it’s manageable—which is exactly what I need.
Text messaging has become a lifeline for gentle, manageable connection. Without the sensory overload of social media, it allows me to stay close to loved ones without exhaustion.
Do you find that certain tools offer you gentle connection without the sensory overload? Text messaging has transformed my connections, keeping them gentle and manageable.
Living Well with Chronic Fatigue: A Book That Brings Comfort
I discovered How to Be Sick by Toni Bernhard nearly 20 years ago. It was a revelation—finally, here was someone who deeply understood what it meant to live with chronic illness and had wise, compassionate insights to share. This book offered me guidance and solace on my hardest days. I highly recommend it to anyone navigating life with chronic illness.
Weather and Radar Apps: Forecasting Peace of Mind
Living in Florida, knowing the weather is crucial, especially with unpredictable storms. With ME/CFS, watching regular weather updates on TV can be overwhelming—there’s just too much sensory input to process. Instead, I rely on my radar app and the Weather Channel app for clear, instant information. With just a click, I can see what’s happening hour by hour, allowing me to make calm, informed decisions without unnecessary stress.
These apps became literal lifesavers during recent hurricanes, especially Hurricane Helene and Hurricane Milton. Thanks to real-time tracking on my Android phone, I could monitor each storm’s path and location from home. Being able to register with Pinellas County’s special-needs program was a huge relief; I was still recovering from a post-exertional crash after Hurricane Helene and was in a difficult state when Hurricane Milton approached. When the county confirmed they could transport me to a special-needs shelter, I felt a huge weight lift. The incredible Department of Health and fire department volunteers took excellent care of me and brought me safely back home after the storm.
I have an enormous sense of gratitude for the Pinellas County service and the tireless efforts of all the volunteers who provide these services. Their compassion and dedication make a true difference for people like me, for whom evacuation wouldn’t be possible otherwise.
Google Maps: Easing the Stress of Travel
I don’t drive often—maybe a thousand miles a year, if that—but when I do, it’s usually to a doctor’s appointment. For someone with ME/CFS, the stress of navigating new roads can be a real source of anxiety. Google Maps has been a godsend. With turn-by-turn voice directions, I don’t have to worry about missing a turn or figuring out complicated routes. The app guides me, eases my mind, and allows me to focus on the road without the added stress. Driving isn’t something I do lightly, but when I have to, having a calm, guiding voice makes all the difference.
Google Maps provides something invaluable: independence. For someone with ME/CFS, navigating new places is stressful, but GPS directions make these trips feel manageable, giving me the peace of mind to find my destination. Have you tried any tools or apps that make travel easier? For those navigating appointments or outings, a reliable GPS can make a huge difference.
ChatGPT: A Digital Companion and Coach
Perhaps the most unexpected yet valuable tool I’ve found is ChatGPT. While it doesn’t replace human connection, it provides an invaluable way to organize my thoughts, explore answers, and manage PEM (Post-Exertional Malaise) strategies. This AI feels like having a quiet, compassionate coach who listens without judgment, helping me make sense of a complex world when I’m feeling lost. In a life where clarity and companionship can be hard to come by, ChatGPT has been a supportive guide, offering reliable information and the space to reflect on my experiences.
Closing Reflection and Invitation
Life with ME/CFS can feel isolating, as though the world continues to move while you stand still. But with the help of modern tools, we can stay connected, learn, and find joy in small but meaningful ways. Amazon, YouTube, Google Maps, ChatGPT, and other technologies have become more than conveniences—they are lifelines. They remind me, even in the stillness of illness, that I am part of something larger.
I’m endlessly grateful for the support these tools offer. What about you? If you’ve found helpful tools or routines that bring you comfort, peace, or joy, please share them below. By connecting and sharing, we create a ripple of support and help each other find the ease and strength to keep going.
What tools or routines bring you comfort and ease? Share your tips below so we can continue supporting one another.
Thank you to everyone who shares their insights and experiences. Together, we’re building a network of support and compassion.
🙏🕊️🙏
Check out this Free GPT ME/CFS Support, Creativity & Mindfulness Tool 😀
For those of us managing life with ME/CFS, I’ve found a helpful digital companion in this GPT Model for Support, Creativity, and Mindfulness. If you’re looking for new pacing strategies, symptom relief, or gentle emotional support, this tool might be helpful to you too.
💡 How it works: This GPT Assistant offers mindfulness techniques, creative ideas, and compassionate support as I manage the challenges of post-viral fatigue, PEM (Post-Exertional Malaise), and daily energy management. It helps me, Maybe it can help you too.
🙏 if you try it, I’d love to hear your feedback! How does this tool work for you? Do you find it helpful in managing your energy, finding comfort, or discovering new ways to express creativity? Let me know in the comments how it goes for you!
Click here to explore the Free ME/CFS Support GPT model:
If you’d like to explore supportive content focused on navigating life with ME/CFS, including tips for energy pacing, mindfulness, and gentle encouragement, you can find more insights and reflections crafted to offer comfort, practical guidance, and connection on this journey
here.
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