An Honestly Horrible Day With POTS

strength in tears meme It’s terrifying to open up and let yourself be vulnerable sometimes. My blog is called “Smiles in the Trials,” and I truly strive to find the joy and positive in each day, however I feel like I would be lying or misrepresenting if I didn’t let you in to see the horrible moments too. I wrote this last week before I left for a road trip for autonomic testing.  Please be kind as you see the raw truth that is postural orthostatic tachycardia syndrome.

POTS really, really sucks sometimes. This is one of those times. I have to be off my medication for at least five days before my autonomic testing. I’m thankful for the opportunity to see another specialist who may have some new ideas. I’m thankful for the opportunity to have testing done by true professionals who do it every day.

But this really sucks.

I’m done with dizziness. I’m done with the room spinning and my body constantly feeling like it’s floating or like I’m on a boat.

I’m done with nausea. I’m done being hungry with stomach pain and picking my meal by deciding what I wanna throw up.

I’m done seeing spots and hearing buzzing. I’m done with the incessant leg, hip, ankle, neck, back, wrist and forearm pain.

I’m done with the pounding headache.

I’m done crying nonstop, which I’m sure is helping the headache.

I don’t share these feelings because I want sympathy. I am sharing because if I truly want to raise awareness, I know I have to be honest in these horrible moments too. Now don’t be mean and make fun of my mid-cry face. Pretty criers are only on TV and in the movies.

The positives I was able to come up with today are as follows:

1. I have my husband. He always finds ways to make me laugh. Today he threatened to let the fainting goats in the house if I didn’t stop crying.

2. TBS must know I’m having a rough day. They showed “Horrible Bosses” followed by “We’re the Millers.” If there is one thing I love, it’s a movie with Jennifer Aniston and Jason Sudeikis.

3. My parents offered to bring anything I want for dinner later. I see Sprite, ginger ale and crackers in my future!

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? Check out our Submit a Story page for more about our submission guidelines.

Find this story helpful? Share it with someone you care about.

Related to Postural Orthostatic Tachycardia Syndrome

cyndie randall and daughter

When My Daughter Reminded Me That Life With Illness Can Still Be Beautiful

I am living with autoimmune autonomic neuropathy and postural orthostatic tachycardia syndrome (POTS). This has colored my life in dark and devastating ways; the emotional weight of it often leaves me trudging through the mud of depression and anxiety. And I’ve slowly awakened to the truth that this illness story is not the only story [...]
Woman shopping at the supermarket

What Grocery Shopping Is Like for Me as Someone With a Chronic Illness

Everybody has a line they draw when it comes to giving in and admitting that it’s time to buy groceries. For some people that line is toilet paper. For others the line is dog food. In our house the line is coffee creamer. Yesterday morning I made coffee and opened the fridge to find that we [...]
doctor writing with computer and stethescope in the foreground

A Message to the Resident Who Didn't Think I Understood My Condition

Recently I had to call up the hospital and speak to my doctor about a change in my condition. (One of my conditions — I have many. This one was postural orthostatic tachycardia syndrome (POTS), which causes my heart to race on standing, but recently it’s been racing all the time, even when I’m lying down. [...]
girl hiking in cinque terre with view of ocean

When Becoming Chronically Ill Feels Like Culture Shock

The summer before my last year of college, I had the opportunity to study abroad in Italy. As anyone’s first experience traveling outside of the country for the first time would be, it was life-changing. I gained lifelong friends and traveled to places I never dreamed could exist. I saw cathedrals that were so awe-inspiring, [...]