A day in the life with PoTS

5am- Wake up

6am-  Wake up again

7am- Wake up, abandon trying to sleep. Write letters to penpals to pass time.

8am- Get up and dressed, tidy room. Eat ready-made breakfast, today was my favourite overnight porridge

9am- Chat with friend, plan a holiday we want to book and discuss dissertations

10am- Visit post room to collect parcel. Have to queue for 5 mins, almost faint. Get bus to post office to post letters. Have to queue for 5 mins, almost faint.

11am- Lecture. I’m exhausted after my 10 minute walk from the post office, including 2 flights of stairs. Sit in the back of a very warm room and try not to fall asleep, make no notes.

12pm- Supermarket to buy lunch. Get grumpy with friend for taking too long to decide and making me stand up. Get bus back home.

1pm- Luckily friend cooks pizza for lunch, lie down and regain some energy.

2pm-5pm- Try to work on uni essay. “Read” 2 research papers, realise I haven’t taken anything in. Read them again. And again. Give up and have crisis about how I’m going to get a job I have the energy for.

6pm- Shower. In cold water, because I find it hard to breathe with the steam, sitting down so I don’t faint, for 5 minutes because I’m too tired for any more.

7pm– 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.

8pm- Lie very very still. Write a few blog posts. Maybe watch a film

9pm- Try to sleep.

 

This was my genuine day on April 19th. The day before had been tiring (me-tiring) so I was starting off already fatigued, but this is a normal day in my life. I spent 2 hours out of the house, and probably only another hour on top of that out of bed. This post is being edited the next morning because I got too tired to write coherently.

Does this sound familiar? Does anyone have any tips for getting through the day?

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