POTS: The Weight of Chronic Illness

My Chronic Life: Entry Two

Nobody tells you that you can mourn a life you’re still living. That you can wake up in the same house, love the same people, and still feel the loss of everything that used to be possible. It doesn’t arrive with a moment you can point to; instead, it slowly accumulates until the distance between who you were and who you are now is impossible to ignore.

This is the weight of chronic illness.

Thankfully, my illness does not threaten my life, but it challenges who I believed I was. The lighthearted adventurer now spends most of her time at home. The rock climber and the horse trainer may never return, and the yoga teacher is on pause, trying to re-shape what her body can handle.

When I wrote my first blog on POTS, I briefly touched on this longing. As I work towards acceptance, I’m processing much of the sorrow from losing my old life. But, as with all forms of loss, grief comes in waves. Before I move forward, it's important to recognize the depth of what I experience internally to reach acceptance. Skipping this would be a disservice to anyone walking a similar path. It’s not easy. Even for a perpetual optimist.

So, before I return to discussing acceptance, let me stay here for a moment, in the heaviness.

I was a very active person, loving the outdoors and all the adventures that come with living minutes from Kananaskis Country. I also loved to train horses. It was a deep, defining part of who I was. I built partnerships with both people and horses that required patience, physical presence, consistency, and trust. I trail rode in the mountains, trained teams to drive, and worked my horses daily. I loved being outside, connected to animals and the natural world. I never questioned whether I would have the stamina to show up. I never thought about limits that might one day prevent me from doing what I loved.

Then my illness began pulling the ground out from under me, slowly at first, and then all at once.

After long training days, I started noticing weakness in my legs, a buckling at my knees and ankles that would nearly bring me to the ground. I chalked it up to working too hard or not eating enough to sustain my level of activity. Eventually, weakness, fatigue, dizziness, and brain fog began appearing during sessions. I had to limit the time I could spend running, walking, and standing. I found myself sitting in the sand of the round pen mid-session just to catch my breath and rest my legs. I started to forget which horses I had already worked with that day, and sitting in the saddle began to feel so unstable that I shifted my focus to groundwork to avoid falls.

Then one day, I felt especially unwell. I left the barn early and went home for a nap, something that had never happened before. When I woke up a couple of hours later, I could not move. I called for my husband to help me out of bed. I couldn't make it to the bathroom without his assistance. Once there, I fell, and we both knew something was seriously wrong.

I spent the next four days in the hospital undergoing tests, looking for everything from vitamin deficiencies to MS, even poisoning. No answers came. I was sent home and began the long wait for referrals, imaging, and further testing.

Working with horses became physically impossible. After months without answers and an inability to reach the barn, I made the difficult decision to sell my horses. My pair were a driving team, and one was a challenging project that needed training I could no longer provide. Selling them was not a choice; it was necessary. Even when you fully understand, the grief can remain. This turning point marked the start of another kind of adaptation.

As the seasons changed and more tests came and went without clear answers, my family and I eventually got ponies to live on our farm. My husband knew I needed some connection to horses, and thought ponies might be a gentler fit for my new reality. They’re smaller, more manageable, and don’t require training. The kids adore them, and they have been a wonderful introduction to the horse world for my decidedly non-horsey husband. This shift brought a measure of comfort amid the uncertainty.

I now rely on timers to remind myself to feed our animals. I have timers for almost everything these days. The brain fog is real and relentless. I have burned countless dinners by walking out of the kitchen and simply forgetting I was cooking. Now I keep a stool by the stove as a not-so-subtle reminder that something is on the heat. Our dog, King, has figured out that my brain is unreliable and has learned to beg for a second dinner each night. Sometimes I remember I already fed him. Sometimes I don't. He is a very clever, very well-fed pup.

I share this to show what daily cognitive dysfunction looks like. It's not simply forgetting a name or misplacing keys, it's rebuilding life around external reminders for a brain that no longer retains the details it once did. Double feeding the dog or overfilling water troughs is harmless, but forgetting school pick-up leaves me completely undone.

Last year, my brother got married in Italy. I was not there. I knew, before I even let myself imagine going, that the travel, the disruption to routine, the social demands, and the physical requirements would push my symptoms beyond easy recovery. So, I stayed home. Watching from a distance while my family gathered was difficult, marking another significant absence that chronic illness imposed.

Missing his wedding is one of the clearest markers of how much my world has contracted, not because I am unwilling, but because my body makes certain choices for me. That distinction matters deeply, and I am not sure others fully understand it from the outside. These misunderstood boundaries often arise after events like this, shaping how I relate to others.

There are friendships that have faded. I have cancelled plans too many times, declined too many invitations, and gone too long without responding to people I genuinely care about. Not because I don't want those connections, but because the energy required to show up socially and the cost I pay afterward are something I cannot always afford. Friendships need tending, and chronic illness leaves little energy for that once the basics are covered. Despite these losses, I focus my limited energy on what matters most.

I fiercely protect my presence for my husband and children. With limited energy, that is where my efforts go. Still, this comes with its own heaviness. I am painfully aware of the gap between who I am now and the partner and mother I once was. I feel it on days when I cannot fully engage, when I sit out, leave early, or ask for help yet again.

I look out at the mountains from our property every day. I remember moving freely through that landscape, my body a willing and reliable partner. I look at those same mountains now and think about hiking them with my family, and rock climbing with my husband. Then I think about what it would take, what the risks would be, whether my body might fail me somewhere that failing would be too dangerous. The mountains are still there, and I am still here, imagining.

Now, I’m figuring out what work is possible. It needs to be physically manageable, not too mentally demanding, and flexible enough for a body without a predictable schedule. Most jobs require consistency, but chronic illness gives skill and drive alongside days when neither is accessible. That gap brings its own grief: lost potential with no clear outlet, the frustration of wanting to contribute and not knowing how.

What I want anyone reading this to understand is that grief and gratitude can exist together.

I am deeply grateful for what I have: a loving, supportive family, friends who understand, neighbours who offer support, and animals I adore on land that grounds me. And still, I allow myself to grieve what I have lost. Both are true, and neither cancels out the other.

The weight of chronic illness is not something you outgrow or discard. It resurfaces each time a new loss occurs, a milestone shifts, or you watch another do effortlessly what once was second nature. It insists on being felt again and again.

I am learning to let myself feel it, without letting it define me. It is harder than it seems, but it feels like the truest path forward.

If you are carrying a weight like this, the kind of heaviness that arrives slowly and keeps persisting, I see you. You are not failing at acceptance by feeling the loss. You are human. You are allowed to mourn the life you had, and the life you imagined, while still building something beautiful in the life you are living now.

One day, the grief will soften, leaving room for more acceptance and gratitude to take hold.

One day at a time, you will learn to carry the weight of chronic illness.

This is a chapter of life I cherish and miss. I can't do this today, but I refuse to stop searching for what I can do. A full life is still possible, it just looks different from what I planned.