When I Told Myself POTS Is 'No Big Deal'

“No big deal.” These three words mock me now. They haunt me on a daily basis. Three apparitions of a life that is now dead and buried.

In my past life I was an overactive overachiever. A certified group fitness instructor, personal trainer, and health coach. I often taught three or more classes a day. No big deal. Those three words were even my mantra in my classes. When I pushed my cycle students to add more gear or increase their pace, “No big deal.”

When I told my strength training students to add more weight, “No big deal.” When I told the kickboxing class they had one more round of Tabata left, “No big deal.” Many of my students joked I should have t-shirts made with that slogan. The point of “no big deal” was that I wanted them to mentally minimize the pain or struggle in favor of the gains. Push yourself beyond what your self imposed limits are and that is where greatness is achieved.

Fast forward to a long bout of mycoplasma pneumonia coupled with two bouts of shingles. A two month clash of illnesses that would forever alter the course of my life. Once the pneumonia and shingles had passed, I was still left feeling sick. I knew something was off, but was told by doctors that my body was just recovering. But wouldn’t recovery indicate forward progression?

My fatigue turned into shortness of breath and heart palpitations. I was always lightheaded and dizzy, and even fainted and collapsed at times. I began to have migraines and trouble sleeping at night, waking up with severe nausea. I went back to the doctors. I saw a cardiologist, neurologist, ENT, and endocrinologist. I was perfectly healthy. But I knew I wasn’t healthy. After months of searching for answers, an electrophysiologist finally diagnosed me with postural orthostatic tachycardia syndrome (POTS).

POTS. I remember thinking, “POTS, no big deal.” They will fix all my symptoms and I will get back to my life. But POTS, as it turns out, is a big f***ing deal.

Before coming down with pneumonia, I had recently returned to a desk job while still teaching several group fitness classes a week. Thankfully, my job allows me the option to telework on an ad hoc basis. I went from making it into work every day, to only several days, to barely showing my face there at all.

A few weeks ago, my electrophysiologist suggested that I limit my driving, therefore forcing me into teleworking full time. No big deal.

No big deal as I stare at the same four walls every day. No big deal that my co-workers are now cats. No big deal that I have almost zero human interaction on a daily basis, except with my boyfriend who is a police officer, who works the night shift…And therefore completely different hours than me. No. Big. Deal.

I now only teach one fitness class, my beloved Saturday morning cycle. Waking up, driving to the gym, kicking butt during class, and then going about my day. All of which used to be no big deal. Now those same things are a very big deal. I never know how I will feel when I wake up. Is today going to be a good day or an extremely symptomatic one? Or will it fall somewhere in between? Will I be OK to drive? Will I survive 45 minutes on the bike? And will that be all of the effort I am able to expunge for the entire day or weekend?

What about household chores? The things most people do on a daily basis that they don’t even think twice about. Cooking, cleaning, laundry, taking out the trash. No big deal, right? Now any one of those things can completely exhaust me or cause me to have an episode. Often I can’t even finish the single chore I have started. Maintaining the house is now a very big deal.

Let’s not forget personal upkeep. You know, the basics such as showering, brushing your teeth, and blow drying your hair. No big deal. Now I often end up on the shower floor and forgo putting any additional effort into my appearance. My hair rarely sees a blow dryer. I rarely put makeup on, or pants without elastic. Forget about maintaining the house – maintaining myself has become a very big deal.

I’ve even had people tell me POTS is no big deal, “How bad can it be anyway? You don’t look sick. The other day I saw you with makeup on with your hair curled and you seemed completely fine.” Yes, but what they didn’t see is later that day when I was in the fetal position in bed, barely able to function because I overexerted myself. No. Big. Deal.

Hopefully through all of this rambling you have picked up on the common thread. For someone with POTS, everything is a big deal. The things we took for granted pre-POTS now mock us with how difficult they have become. I used to live life like it was no big deal. You worked hard and you played hard. Now both work and play, and everything in between, is a big deal.

I’m starting to come to terms with my new “normal.” I’m starting to celebrate the little victories, “Hey, I made dinner and did two loads of laundry tonight. It was no big deal.” Or, “Look at me, I stood up for 30 minutes and didn’t collapse. No big deal.” Those words are ironic now and I use them purposefully that way, because every victory is a very big deal. Every good day is a very big deal.

My battle with POTS is still fairly new. I’m not even quite through the grieving process and still seem to be stuck somewhere between the anger and fear phase. I’m still angry that I have this syndrome and I’m angry at how drastically it has altered my life. And I now fear doing the things that used to be no big deal to me.

But one thing I do know, is I’m not going to let it defeat me. There will be days when POTS wins, but there also will be days when I win. What I have to keep in mind is my life, whether now infiltrated by POTS or not, is a very big deal. And while POTS thinks I’m no big deal, I think I’m a big f***ing deal. And what I think matters more than what POTS does to me.

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Thinkstock Image By: bruniewska