PROJECT POTS - Episode 5: Being Spontaneous While Having POTS - Postural Orthostatic Tachycardia Syndrome

PROJECT POTS - Episode 5:  Being Spontaneous While Having POTS - Postural Orthostatic Tachycardia Syndrome

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EPISODE 5

Being Spontaneous While Having POTS - Postural Orthostatic Tachycardia Syndrome

Hello everyone! It's Valerie back with another episode of Project POTS.

This week I want to talk about spontaneity, but I guess for most of us that's more or the less lack thereof. Spontaneity is something that's really difficult for me.

If I'm going to be going anywhere, doing anything I need to know ahead of time. I have to start saving energy. I have to know what I'm packing. It sounds weird to use that word "packing" for going out to do things, but when I leave my dorm I need to bring all of my emergency medical supplies.

I have to have water, a salty snack, sunglasses for light sensitivity. I sometimes have to have medical documentation because you're not allowed to bring medications in certain places like concert venues. It's a process and it's kind of hard to do last minute.

Last night I actually got a text from a friend at about 10:30pm saying, 'Hey, the movie theater down the street is doing the night showing of this movie' - that she liked. She wanted to know if I wanted to go with her and I hesitated. I'm not gonna lie, because obviously I'd love to, I'd be so happy to but it's so last-minute.

I hadn't stockpiled the energy, and it's late. Am I gonna get the right amount of sleep? I have all these sorts of questions that other people just don't have to worry about. I actually called my mom and I asked her what she thought I should do, and she told me I should go.

I did. I'm not gonna lie. Waking up this morning was a little bit difficult considering that when you get back from a midnight movie it's like 3 a.m. But I'm really glad I went. I had a really good time with my friends. Although, yes, I did pay some price for it today, it was nice to feel like just any average person. Just doing something with friends last minute, not having to constantly put this much effort and thought into it.

Obviously there's gonna be times where people are gonna ask me for things last minute and it's just not gonna work out. But this was probably the first truly spontaneous thing I've done in my life. It's just one of those things that I think everyone takes for granted.

It made me really excited and I think that's something a lot of you can all relate to. Whether it's your first spontaneous going out to dinner with friends or just spontaneously hanging out with people. Spontaneous can even be as simple as going to see a movie. I think it's something that does kind of show us that we can just live a normal life sometimes.

So I'll leave y'all with that for this week and I look forward to talking to y'all next week.

Go to Episode 6 - Beating the Heat with POTS - Postural Orthostatic Tachycardia Syndrome

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1 comment


  • Issy

    Thank for sharing Valerie! I am in college right now also struggling with spontaneity and POTS. I really appreciated your perspective on accommodating activities or doing something a different way rather than just giving up because it can’t happen the way I imagined. I will be thinking about ways I can do this in the near future.


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