Navigating Life with POTS and Pans

Hello! Today I wanted to share one of my experiences and some practical tips that I wish I knew sooner!

Okay but first…story time. It was 8am on a Monday morning, and I was rushing to get ready for class. I wasn’t feeling great, but I was just focused on getting to class.

However, when I went to put on my shoe I experienced a searing pain. I went to sit down because I was like, okay something is not right, I’m not feeling great. One thing led to another and pretty soon I passed out. Now, falling when you faint is the body’s way of returning blood to your brain so that you can regain consciousness. However, when I fell my body didn’t plan on having objects in the way so that did not go well. I hit a wooden bookshelf and then the lovely dorm floor. Because I fell from a seated position it was a little worse because instead of bracing my fall, my legs did absolute nothing.

Now fast forward to when I woke up. First, I was soooo confused. It really is not the best feeling realizing you have no idea what happened or where you are. When I woke up I thought I was back at home, in Virginia. Unfortunately, I realized I was in fact in my (not so) lovely dorm. I knew I needed to get up and lay back down in an area that wasn’t so confined. Now a shameless plug for the Apple Watch. I’m not the biggest fan of technology and was really “anti-Apple Watch”, but my parents got me one for my birthday-I wasn’t about to be like “no thank you, take it back please.” Once I got to school I wore it to track my heart rate, but in this instance it was sooo helpful because I was able to call someone from my watch instead of having to find my phone, which was just not an option at the time. I used Siri to call my dad who helped me figure out what to do next.

Now, at this point I had two main issues: I was in a LOT of unexplainable pain and I was really out of it: pale, slow speech, and general confusion (you get it if you get it 😉

Luckily, one of my suite mates heard me on the phone and was like something isn’t right and came to check on me (thanks Ella Bella). Soon my room was buzzing with RAs, a police officer, and some EMTs. They had to gurney me out of the room and getting one of those things out of a dorm room is a process and not a fun one.

So now we are in the (uncomfy) ambulance ride and guess what, that Apple Watch I so shamelessly plugged now gave me a reminder to stand, which the EMT and I thought was very comically ironic. Anyway, ride to the hospital was a (bouncy) time and they ran some tests and did all the things.

They discharged me later with some new meds and sent me on my way. But guess what…they didn’t even catch the fact that I had a concussion…yeah like what??? Guess who did, my suite mate, Emmy! She noticed I was having a really hard time with bright lights and conducted a DIY concussion assessment. I then started living my world in darkness, behind the darkest pair of sunglasses I could find. The next day I went to campus health and they confirmed my concussion and recommended I go home. So back to Virginia I went. I was home for a week where I basically just sat in darkness and listened to the Hamilton soundtrack and lots of music.

Fast forward to being back at school and dealing with a concussion. I’m not going to lie to y’all it was really hard. Once I got back I wasn’t cleared for school for another week; even after I was back at school I wasn’t able to take on my full workload.

There was some awkward in between time where I literally didn’t know what to do and how to deal with the situation. I wish I knew…

• What resources were available to me
• That POTS and concussions don’t get along
• That it was okay to ask for help
• That my professors weren’t out to get me
• To have grace for myself
• I didn’t have to tackle everything at once
• That everything happens for a reason

Resources

Okay so I didn’t realize UNC actually had a way to deal with problems like this. I just honestly had no idea what to do and how to deal with the amount of class I was missing. For context, I had missed two weeks of class but the biggest problem was that I couldn’t keep up with making up work and the pace of my classes. I could only handle work in small amounts, especially because the majority of work in college is done on screens, which my concussed brain just did not enjoy and simply could not do.

Here are some resources I did not know were available to me that I wish I knew about:

• Academic Advising
• University Approved Absences
• ARS Accommodations
• Dean of Students Office

I know some of these things may be common knowledge, but it was my first semester of college and I really had no idea where to go for this kind of help.

The Dean of Students office was recommended to me by an RA. While the Dean of Students office couldn’t directly do anything they did send out an email to my professors basically saying “give her some time” which was super helpful. The woman who was helping me also informed me that I could apply for ARS accommodations to accommodate for my concussion. I didn’t know how to go about getting these University Approved Absences all my professors seemed to want but it turns out I just needed to go to Campus Health and say I needed them haha.

POTS vs. Concussion

Yeah…these two didn’t get along. Oftentimes it was hard to say if what I was experiencing was due to the concussion or POTS, which made it difficult to tell if my concussion was improving.

I also realized that part of the reason for this “episode” was that I had not been taking good care of myself. I wasn’t doing half the stuff I was doing when I lived at home. My concussion was a little bit of a wake-up call that it was now up to me to take of myself. This was honestly really scary. But with the help of my parents I got myself back on track.

In order to better improve my concussion I knew I had to do everything possible to help my POTS. This meant:

• LOTS of water
• More salt (hydrate or diedrate)
• Sleep
• Vitamins
• Taking my meds more regularly
• Staying active (if possible)

Sleep was the hardest mentally (not physically I was always exhausted haha). It was hard to put my health first as I slept and saw all my friends going out and having fun. But I realized I was not in a position where going out would be fun and that in order to recover and be able to be more social in the long-run meant taking care of myself now.

Asking for Help

I thought I needed to take handle everything by myself because I was now in college and supposed to be independent. But I quickly realized I couldn’t. One day I called my parents and explained that I wasn’t able to keep up with school and just felt like I was drowning. My parents talked to me about the possibility of dropping a class. I really didn’t want to because in my mind I had a set track that I wanted to follow in order to get into nursing. In my mind if I didn’t stay on track I wouldn’t get into the nursing program at UNC. My parents helped me see that not all tracks are linear and that it was okay to drop a class and that it didn’t mean I wouldn’t get into nursing. I ended up dropping Psych and have realized that everything is going to be alright.

My amazing mom drove down that weekend to help me with some of the other life stuff I was struggling with during all of this, and I will be forever grateful for that visit. It made me realize I wasn’t alone and that relying on others didn’t make me weak, it made me stronger.

Having Grace for Myself

Having grace for myself is only possibly through gratitude. Being thankful for what I am able to do gives me the ability to give myself grace when I fall short of the expectations I have set for myself.

For example, I really enjoy exercising. It has always been in my life in some form or another. However, POTS has made it a lot more difficult. Recently I was working out and something just came over me (thanks anemia), and I couldn’t keep going, I was that exhausted. I laid down on the mat (and after being a little bit annoyed haha) just thanked God that I was able to get to the gym at all and that I had the gift of movement.

Realizing I Didn’t Have to Tackle Everything at Once

Sometimes I just get overwhelmed by the sheer mass of things to do. Realizing that it was okay not to be so completely on top of everything all the time really felt like a weight off my shoulders. Don’t get me wrong I still often find myself feeling like that and it is something I still work need to work on.

However, if I ever miss school or other events due to a health set back it always helps to remind myself that it will get done, but I don’t necessarily have to get it done right now. And sometimes you just have to take the L on an assignment (or exam) and listen to your body and go to sleep and that’s okay too.

My Professors Were Willing to Work with Me

I went to a very small high school and had very personal relationships with many of my teachers and staff. I had a support system from friends to mentors to teachers who I knew wanted the best for me. But more importantly my teachers knew me.

Coming to college my professors didn’t know a thing about me. They didn’t know if I was a good student or if I was being honest about my symptoms, since they were intangible. Because of this I was really nervous that my professors wouldn’t believe me or that they wouldn’t be forgiving. However, they were more understanding than I was expecting and worked with me, even the professors for my huge lecture classes.

This taught me that I can’t judge the way someone will react until I actually talk to them and that it does me no good to make up scenarios of how I think someone will react. I learned that benefit of doubt needs to be extended to everyone, my professors included.

Everything Happens for a Reason

Health setbacks are awful and disheartening. It’s just a fact.

But they don’t have to define us.

Okay I’m not going to lie, I was struggling with how to end this, but I was doing a Peloton workout earlier today, and Jess Sims always knows just what to say. She talked about who those who have no hurdles to jump in their life do not progress like those who face hardship and have hurdle after hurdle. She filmed this particular workout at the end of 2022 and she asked the audience to think back on what they were thankful for that year. She challenged the Peloton community by asking them to think of something that they were originally angry about but that they were later grateful for that year. For me, this was my concussion. I thought it had set me back, but in reality this hardship had allowed me to progress in so many ways.

At the beginning of my “concussion era” I was lowkey slightly angry. I was like “really of course I got a concussion!”

But once I changed my frame of mind I realized that my concussion was actually a gift. What I didn’t mention is that going back home for that week gave me the ability to say goodbye to a dear friend. During Covid I got to know my elderly neighbor, Florence. The week before my concussion, she fell ill and was in an end of life facility. Going home for that week gave me the ability to say goodbye to her before she went “Somewhere over the Rainbow.” 😉

Getting out of my own head has been something that’s been extremely helpful. Thinking about my experience through the lens of what it has allowed me to gain, instead of lose has helped me shift my frame of mind. The depth of our experiences gives us our strength and shapes the type of person we want to become, our experiences make us unique, they make us, us.

Much love and I hope you know you are not alone!

❤ Ashley