An Average Day in My Life with POTS

5:00 a.m. Wake up, I’m too hot. Throw the duvet off and manage to fall back to sleep.

6:00 a.m. Wake up again. My mouth is really dry, so I grab a drink, and try get back to sleep again.

7:00 a.m. Wake up, abandon trying to sleep even though I’m still exhausted. Write letters to pen-pals to pass time until I find the energy to get out of bed.

8:00 a.m. Get up and dressed, tidy room. I usually have an early morning energy boost which means I have the energy for this. Eat ready-made breakfast, usually fruit or overnight porridge.

9:00 a.m. Chat with friend, plan a holiday we want to book (and research if it’s actually accessible for me).

10:00 a.m. Visit the post room to collect a parcel. Have to wait for five minutes, almost faint. Walk up to the bus stop. It’s about 200 meters and I can’t catch my breath by the time I get there. Use the bus journey to recover. Arrive at post office to post letters. Have to wait for five minutes, almost faint.

11:00 a.m. Finally make it to my lecture. I’m exhausted after my 10-minute walk from the post office, including two flights of stairs. Sit in the back of a very warm room and try not to fall asleep, take no notes.

12:00 p.m. Head to the supermarket to buy lunch. Get grumpy with friend for taking too long to decide and making me stand up. Get bus back home.

1:00 p.m. Luckily friend cooks pizza for lunch. I lie down and regain some energy.

2:00 – 5:00 p.m. Try to work on my essay. “Read” two research papers, realize I haven’t taken anything in. Read them again. And again. Give up and have a crisis about how I’m going to find a job I have the energy for when I can’t write an essay.

6:00 p.m. Shower. In cold water, because I find it hard to breathe with the steam, sitting down so I don’t faint for five minutes because I’m too tired for any more.

7:00 p.m. Cook tea, packet pasta because I don’t have the energy to cook. It’s not very nice. Lie down with hairdryer next to my head. Unsurprisingly, my hair does not dry. Get into bed.

8:00 p.m. Lie very very still. Write a few blog posts. Maybe watch a film.

9:00 p.m. Try to sleep.

This was my genuine day on April 19th. The day before had been tiring so I was starting off already fatigued, but this is a normal day in my life. I spent two hours out of the house, and probably only another hour on top of that out of bed. This post was edited the next morning because I got too tired to write coherently.

This post originally appeared on POTS and Spoons.

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

Thinkstock photo via Purestock.

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

Related to Postural Orthostatic Tachycardia Syndrome

jayde jackson

What I Realized About Invisible Illnesses From Having a Daughter With POTS

I am fortunate to have two children to call my own; they fill my world with love and challenge me every day to be a better person and make this world a better place. My grown son is 24, determined to be independent, and he also has bipolar disorder. He never ceases to amaze me; [...]
woman holding up shirt to show scar on stomach

The Power of Scars When You Have an Invisible Illness

I was diagnosed with postural orthostatic tachycardia syndrome (POTS) in 2008, after 15 months of searching for the cause to my fatigue, weight loss, intense stomach pain, and extraterrestrial skin tone. (I’m not kidding — I was actually faintly green.) At that point, even the Mayo Clinic didn’t have a lot of info on POTS. My [...]
Mom and child holding hands.

How My Son Reminded Me That Resting is 'Enough'

On the 6 of May, I opened my journal and wrote the words, “I made a cup of tea,” on a fresh page. After the final letter was formed, I sat back and read the sentence, my mind slowly working through my day as I tried to find another thing that I had accomplished. A [...]
people riding on a rollercoaster

When POTS Is Like a Rollercoaster Ride That Never Stops

Chronic illnesses aren’t a gift, they aren’t something I wished for, but I’m beyond thankful for all of the opportunities they have given me. POTS (postural orthostatic tachycardia syndrome) isn’t something I wanted or something I would wish on my worst enemy. It is my worst enemy. Most days I’m not able to go out on [...]