Exploring the ups and downs of chronic illness
Exploring the ups and downs of chronic illness
When a Shower Becomes a Battleground "Adapt or die." It sounds dramatic, but for those of us living with MS and POTS, it’s a daily reality. In this post, I share how a simple case of COVID triggered a terrifying systemic failure, turning a relaxing shower into a fight for consciousness. Join me as I navigate the messy, unglamorous, and resilient reality of chronic illness—and why self-care sometimes means just surviving the morning.
Are you tired of feeling like the camel whose back is perpetually about to break? As a mental health counselor living with MS, I know the old 'straw' analogy falls short—especially when dealing with the cumulative, delayed effects of chronic illness and stress. My latest post explains why stress is more like a slow, accidental 'drinking spree' than a pile of straw. More importantly, it shows you how to move from being the passive victim of circumstance to the empowered person who chooses their 'last call,' embracing the critical difference between fault and responsibility.
Living with Multiple Sclerosis often means adjusting expectations and finding new ways to spend time together, especially during busy holidays like Thanksgiving. While I may not always have the energy for massive cooking projects or travel, one tradition that always brings us pure joy is creating a story, one sentence at a time, with my daughter, Maddy. It’s a low-energy, high-imagination activity that reminds us both of the magic we can still find in the everyday.
This year, we cooked up a truly wild, whimsical Thanksgiving adventure involving a missing ingredient, a tiny dragon, a flying cat, and a grumpy turkey.
We hope you enjoy reading our completely unexpected holiday tale!
I was the capable, steady leader—The Driver—until chronic illness shattered that identity. The ultimate lesson of MS is that I can't swap my hand for a healthier one. I had to face the No Redeal Reality and learn to modify the game.
I realized I wasn't just fighting for accommodation; I was actually fighting for acceptance—the fundamental acknowledgement that my reality is real. My cardiologist gave me that gift, telling me I wasn't making it up. But when bureaucratic systems like the IRS deny you what is rightfully yours and demand proof, they drain the finite energy you need to manage a migraine that’s lasted three weeks.
My husband's journey and my cat, Charlie, taught me the blueprint: Strategic Success. I am choosing the kindest path by not wasting energy performing capability for a hostile system. Are you wisely redirecting your energy, or letting the system wear you down?
"I spend nights stitching up the loose threads of my soul. In the morning I'm bulletproof." - Noah Kahan
That lyric perfectly describes life with chronic illness—and life when you know you need a change. For too long, I've listened to the soft voice of fear telling me to stay safe and comfortable, even if it meant being miserable.
Now, I'm finding the courage to face what can't be changed, and change what I can. It's scary, but staying stuck is scarier.
It's shocking for me to think about now. In contrast, today I wasn't sure I would make it through my 9-5 workday. Golden me from back then would tilt my head with one eyebrow up hearing the struggle I was currently having.
'What do you mean, you’re mostly sitting… how bad can it be?'
Yet, by 2 pm today, I had my feet up, hoping to encourage blood to get back to my heart and brain. Walking the last few clients out of my office, I've had to sneakily close my eyes and hold on to the walls as the world goes black. Repeating to myself 'please don’t pass out in front of a client' quietly in my head.
My body may have different plans, but I still want to be the fun, go with the flow, exciting person I can remember. Maybe it is more about balance. Maybe we are not meant to be full black cat or Golden. It’s possible that our job as a person, parent, or for me, as a therapist, is to find and embrace moments of each.
In a world where everyone tries to fit in, some of us can't help but stand out. From the unique name to the collage of colors in my hair, I was always easy to find on the "Guess Who" board. But as my life with MS has unfolded, my uniqueness has taken on new layers, from the cane I use to the strange medical symptoms that leave even specialists shrugging. It's an exhausting, and sometimes painful, kind of unique. Yet, I'm learning that my "weirdness" is also my superpower—not in spite of my struggles, but because of them. My experiences have taught me to see the world differently and to find the jewels hidden in the ash, helping me to connect with others who feel just as complicated and misunderstood as I do.
When I told my supervisor the world turns black when I stand up, she said, 'It does?! Every time?' Yup. Every time. They wonder why I prefer telehealth. This is a day in my life with a chronic illness, where a simple shower feels like a monumental task and an unexpected conversation in the office can be the most recharging part of the day. It's a day of navigating appointments, family needs, and a body that has other plans. This is the unshowered truth of what an invisible illness looks like.
