happy POTSiversary to me…

happy POTSiversary to me…

I’m going to tell you a story about the woman in this photo.

 

woman in hospital gown

 

This was taken a little over six years ago. She woke up after a restless sleep, like every other night that year. After donning some yoga pants and a sweatshirt, throwing her hair in a messy ponytail, and staring at her makeup-less face in the mirror for a few minutes, she gazed silently out the window while her boyfriend drove her to the hospital. Her thoughts centered on uncertainty and apprehension, but above all….hope. Hope that once she reached the hospital, she wouldn’t be in pain, wouldn’t vomit all over herself, and wouldn’t lose consciousness.

Even more….hope that she would.

After filling out the necessary paperwork, she sits quietly while the nurse explains the details of the test. She stares intently into the nurse’s eyes, never letting her gaze falter, because she knows if she doesn’t appear confident and calm, she will be told it’s probably all anxiety.

She realizes the nurse has stopped talking and is waiting for her to ask questions.

“So, you’ll strap me to a table?” she asks.
“Yes,” the nurse responds.
“And then you’ll tilt the table.”
“To 70 degrees. Yes.”
“What happens if I faint?” she reluctantly asks.
“We’ll lower the table back down so you’re in the supine position.”
“And if I don’t faint?” the woman wonders.
The nurse doesn’t answer.
“If I have this postural ortho – whatever you called it, I’ll wish I did?” she presses further.

The nurse stared wordlessly into her eyes. After a few moments of pregnant silence, the nurse responds, “Let’s get you ready for the test.”

That look on the woman’s face in the photo – the one that says “what the f*ck just happened” – that’s because she’s wondering WHAT. THE. F*CK. just happened. About 20 minutes prior to taking this photo, her table was tilted back to supine, and the doctor came in and told her she has the postural ortho – whatever thing. She has no idea what that means, and she’ll spend 4 hours tonight on the internet researching it. She didn’t faint, but her doctor cut the test short after 10 minutes because her heart rate had more than doubled, and the diagnosis was obvious.

She not sure how she’s able to stand while taking this photo, because she can’t feel her legs. Her chest pain and palpitations have not subsided, and the dizziness prevents her from seeing her face clearly in the mirror. She’s not ready to look into her own eyes yet, anyway, for fear of what she might see:

Herself, broken.

She’ll text her ride and stumble out to the lobby at the hospital to wait. She will observe the others in the waiting room and realizes that, although she is surrounded by people, she has never felt more alone. The magnitude of the morning weighs heavily on her; she understands this may become a defining moment of her life. When the BF pulls up to the curb and honks for her to come out, she’ll hate him for a minute for not coming with, for making her walk out to the car. Even though they agreed that morning. Even though it was her idea.

He asks about the test, but words fail her.

“I have postural something-or-other,” she finally mutters. “Just drive.”

It will take her a week to tell her family. Twice as long to tell her friends.

Six years later, she sometimes still thinks about that day. It was an awful day. But it wasn’t her first, and she knows it won’t be her last. It was, however, the loneliest day of her life, and she hopes it will forever remain as such.

Someday she will write you a post advising how to deal with being diagnosed. But for now, she will just tell you this:

1. There’s no right or wrong way to feel. Whatever you’re feeling is valid. So feel it.

2. Start building your community from day one. It doesn’t have to be worse, but your life from this day on will never be the same. This of all days should never be your loneliest.

“The breaking of so great a thing should make a greater crack.” – William Shakespeare

Smell ya later.
– Linds

6 thoughts on “happy POTSiversary to me…

  1. I’ve pressed the like button, even though there’s obviously nothing to like 🙁 I have to admit, I sometimes still feel as lonely now as I did on my first few months of diagnosis. Chronic ill health is such an isolating thing – thank God for the internet! x

    1. YES!! I honestly don’t know if I’d be alive without the internet. Shortly after my tilt table test, I met a woman online through one of the support forums who introduced me to the cardiologist I see now (who is AMAZING), and who invited me to join a Facebook based group that meets up once or twice a year. I can’t imagine being diagnosed with a chronic illness 30 years ago. How lonely!

  2. Happy POTsiversay! I’ve had the test, too. Horrible! Felt drunk for a few days after. But it was a relief to have evidence that I wasn’t losing my mind or imagining it. I have EDS as well, totally get those alone days, too. Thanks for sharing, and I hope you have good days. And it’s good to remember that even though we feel very alone with our conditions, we’re not alone, we just have to reach out. Keep up the blog 👍

    1. Thanks for the comment! Yes! – I felt drunk for days after as well. In some ways I was relieved when I finally was diagnosed, but a part of me really thought it was going to be something simple and I could take a pill for a few weeks and I’d be all better. A very lonely day, for sure, but if that’s my loneliest day, maybe I’m pretty lucky.

  3. I spent 3 weeks last summer at a pain management hospital, I learnt a lot and met some fantastic people that have the same conditions. One of the things we did was Mindfulness and I found it to be very beneficial. We also did seated Qigong and now I blend them together. I don’t know if it’s something you’ve already tried but it might be worth a look.

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