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An Average Day in My Life with POTS

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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.

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Thinkstock photo via Purestock.

Originally published: May 31, 2017
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