Why My Life With POTS Is Like a Hallmark Movie


What do you do when you are stuck in bed for the better part of 15 months? Watch an awful lot of lot of Hallmark movies, of course. While they are certainly predictable and perhaps a little too saccharine at times, they are low intensity, don’t require much thought, and upbeat— all things that work well for me right now. Having seen dozens of these movies the last year, I’ve discovered they all follow the same pattern.

It goes like this:

  • Life is going well
  • A sudden change turns everything upside down
  • Main character slowly starts to adjust and find happiness again
  • Another dramatic plot twist occurs that generally requires the main character to make a tough decision, reflecting on the deep, heartfelt lessons she has learned over the course of the show and what really matters most in life, and oftentimes choose between her old life and new
  • A decision is made and the best possible outcome emerges. Everyone lives happily ever after.

One common subplot of the Hallmark movie is the dream sequence. The main character wakes up to find that her life has totally changed — for better or worse.  At the end of the movie, she awakens, once again, to realize the “new life” was somehow just a dream and she is able to go back to her old life with a new found perspective to enrich and improve her life.

****

I have been home bound and mostly bed-bound with postural orthostatic tachycardia syndrome (POTS) for over a year. A couple months ago I attempted to attend my son’s Eagle Court of Honor.  He has been working diligently on getting his Eagle Scout award for the last five years, including earning numerous merit badges and culminating in a 90+ hour service project that involved his family, neighbors, and community. I was so proud of his accomplishment and determined to attend his Court of Honor. Yet, I showed up and was immediately overwhelmed by the light, noise, and chaos around me. I started to crash and ended up passed out on the couch in the foyer. (Fortunately, I was able to make it back in just long enough to see him be given his award, before my husband promptly wheeled me out and back home.)

I came home upset and discouraged, once again, at my limitations.  The thought occurred to me, “Why can’t my life be like a Hallmark movie?  Why can’t I just wake up and have my old active life back!? (And, of course, still remember all those great heartfelt lessons I’ve learned from the past year.)”

Totally plausible, right?

Fast forward a couple weeks. I had a good day! I was able to go sit in the temple for a few minutes. (The LDS temple is a house of worship where sacred ordinances are performed and instruction received. Everything in the temple is light, white, and bright. People speak and act in reverent tones, and feelings of calm and peace prevail). I had been unable to go to the temple for over a year, and while I couldn’t participate in any ordinances, I was so pleased to just go bask in the peaceful atmosphere for a few minutes.

With my POTS, my tachycardia and excess adrenaline always make me feel somewhat frantic when I am sitting or standing. And while those symptoms were still present, there was certainly a layer of calmness there that I have been craving.

As I sat in the celestial room, I reflected on my life circumstances and found myself caught up in silent prayer. A thought came clearly to my mind: “I have everything that matters most.” Yes, I dearly miss our family adventures — traveling, exploring, hiking, and biking.  Yes, I miss being able to go out with friends and throw or attend parties. Yes, I miss wearing the nice clothes and jewelry hanging in my closet (yoga pants and t-shirts are my staple now). Yes, I miss shopping the aisles of Target, Kohls, and Hobby Lobby looking for those great deals that give me a temporary high. Yes, I miss helping at my kids’ school, going to their programs, and even cooking and cleaning for them. Yes, I miss having the independence to go where I want when I want and not having to leave the house in a wheelchair or live in constant dread of passing out in public. But, in the eternal scheme of things are those the things that really matter?

My family’s basic needs and wants are met. I have an incredible, loving, and compassionate husband. I have four amazingly sweet and healthy children. I have family, neighbors, and friends that I love and that love me in return. I have faith in Jesus Christ and His gospel. I have everything that matters most.

Fast forward one more time to last month. Over the holidays I wasn’t feeling well (chalked it up to typical POTS stuff, plus straying from my restrictive diet). However, within a couple of days my symptoms had escalated greatly. I was in as much pain as I have ever been (including labor). A trip to the doctor and, later, the ER proved fruitless as, after blood work and scans, no apparent problems could be identified. For most of the week I have been curled up in bed with my pain level hovering at a nine to 10. It has been excruciating and unbearable. I couldn’t eat, and even drinking water sparked intense pain that nothing could touch. I sobbed from the pain, but also the terror that this might be my new reality.

Miraculously, after a week, the doctor’s office called to report that the initial screening that showed no infection was false, and I did, in fact, have an infection, which was probably also exacerbating all my other issues. (Hallelujah for an answer!). Although it took several rounds of antibiotics, I was able to get a bit of relief after the first few days. The pain has eased, and although still trying to calm the rest of my flaring symptoms, I am grateful to be past that horrible ordeal.

In some ways, I guess my life is a little like a Hallmark movie — a sudden life change last year with my POTS diagnosis, working to find happiness again with my new disability, and even a dramatic plot twist this week… Perhaps this past month is similar to the dream (i.e. nightmare) sequence. It has certainly given me more room for reflection on what I am grateful for. Although I am not a stranger to chronic pain, it has given me more compassion for others that live with constant levels of such high pain. My typical POTS symptoms, though awful, seem like a walk in the park after that awful week I had. I have seen proof of the saying, “Things can always be worse,” and regained perspective and gratitude for the seemingly lesser problems I have. As I move forward facing the sometimes bitterness of reality, I cling to the sweet reminder I was given that I have everything that matters most.

This blog post was originally published on Mommy Can’t Dance.

We want to hear your story. Become a Mighty contributor here.

Lead photo by Thinkstock Images

TOPICS
JOIN THE CONVERSATION

Related to Postural Orthostatic Tachycardia Syndrome

Doctor explaining to patient

When I Wonder If I Could've Been Diagnosed Earlier If I Explained Myself Better

“Lightheaded.” “Dizzy, but not the spinning kind.” “Like I’m going to faint.” Presyncope. I wish I’d know that word back then. Things could have been much easier. I spent months not knowing how to describe my symptoms in a way anyone could understand. I said I was lightheaded so many times for lack of a [...]
back of woman's head walking through city

The 5 People You Meet When Living With POTS

A diagnosis of postural orthostatic tachycardia syndrome (POTS) is life-changing, as are the symptoms often experienced years before diagnosis. POTS is far from a rare disorder. Millions in the U.S. are living with POTS and millions of others may be misdiagnosed with mental illness or another neurological or cardiovascular disorder. Whether you’ve had POTS your [...]
person jumping in air with sky in background and words live life on sky

When We Stopped Waiting for My Daughter's POTS to Be Over

My daughter has postural orthostatic tachycardia syndrome, or POTS, and is part of a research study that allows her to competitively swim again! But she still struggles with anxiety. Stop Living in Limbo Of course that’s easier said than done. The last several years of our lives have been in a constant holding pattern as we [...]
young woman with backpack

Why I’m Still Grieving the Person I Was Before My Chronic Illness Diagnosis

I was the girl who friends could rely on for advice or for a shoulder to cry on. I was always busy with plans. I was the girl who was always smiling and filled with happiness. But looking at me now, you wouldn’t recognize that girl. That girl is gone and might not ever come [...]