Navigating Life with POTS and Pans

Staying positive is by no means easy, but it can be the deciding factor in choosing the life you want to live. Staying positive is easier when you feel understood; read to the end to join a new way to connect with other teens and young adults with POTS!

I treat my life much like how I treat my belongings. I ask the question that Marie Condo has coined, “Does it spark joy?” If it sparks joy I do more of whatever that happens to be. If it doesn’t spark joy off it goes. Saying “off it goes” is easy but doing it is harder.

Do what fills you with joy, do what makes you come alive, do what makes you wake up in the morning. And if you don’t know what that is, that’s okay! But, there’s only one way to find out what this is, trying different activities!

However, something I have learned is that I need to pace myself. I am very much the type of person who feels good one day and then I push myself too far and end up experiencing a flare up of symptoms. When flare ups happen its important to know what you can do that will bring your spirits up. Do you have a friend or family memember you can call? a favorite TV show? a song that makes you feel seen? a book you’ve been dying to read? someone who would appreciate a hand written letter?

All of these things are things you can do from your bed if you are not able to get up or if you are experiencing a flare up.

However, it is also important to recognize that just because you have POTS does not mean you suddenly have to stop doing all the things you love to do, they just might look a little different.

GO to that concert…but maybe bring a portable stool or a mobility aide. You can even call ahead to see if there are any accommodations you can receive. Advocate for yourself!

HIKE that trail…but give yourself enough time to do it slowly and drink plenty of water before and after and bring along good friends you feel comfortable saying you need to turn around if you are not feeling up for it, and that’s okay too! or…you can have someone drive you up that mountain so you still get the awesome view because let’s face it, most days hiking up a mountain is a bit unrealistic.

Go for a DRIVE and blast that music…last I checked driving involves sitting so that’s a green flag, just make sure you’re hydrated so there’s no brain fog! If you struggle with numbness in your legs while driving try compression socks.

Have a DANCE party! It doesn’t matter if it’s by yourself or with some friends. I have discovered late night bedroom dance parties with me myself and I are superior, especially because you can lay down on your bed as soon as you get tired! or…these also work just as well sitting down, sometimes it’s just about the music.

Take a WALK. Being outside in nature always brings me joy and re-centers me and reminds me of my place in the world. Go to a park where there are plenty of benches so you can take breaks.

Go on a day TRIP because why not. Day trips are some of my favorite things in the world. I’m a big believer in the saying: Create Your Own Adventures! Because guess what if you wait around waiting for interesting things to happen to you, you’ll be waiting for a while!

Find a PASSION PROJECT. I love a good passion project. Passion projects are especially helpful because a lot of it can be done from the comfort of your bed. But, even though passion projects can be done from home their effects may extend far past your home, filling you with purpose and knowing you made a difference, even if you are homebound by POTS.

Explore NEW HOBBIES. Watching Grey’s anatomy made me super interested in surgery. So, what did I do…I ordered a suture kit! It has actually been so fun and I taught myself, from my bed, through YouTube.

Go down the RABBIT HOLE. Learn new things. And guess what you can do this from the comfort of your favorite chair. I really want to know the name of every country in the world so sometimes I go on a quiz game to practice. Other times I really wanted to know more about the heart so I go to a website that lets me practice matching names to the different parts of the heart. Other times I want to know why Madeline Cline and Chase Stokes broke up, so down the Rabbit Hole I go. Finding something that interests you can be fulfilling because knowledge is power. Just because you aren’t able to go to school doesn’t mean there is nothing you can do from bed.

Filling your life with things that bring you joy and fill you with a sense a purpose, makes the good days awesome and the bad days a little better! If you are tired of sitting in bed one thing that might help is looking into mobility aides. There are so many options out there, including therapy dogs!

Below are some examples of ways I have been able to incorporate some of the things I’ve talked about in my own life!

Have fun, dance in the dark, frolic about, but recognize your limits. What makes POTS especially hard is that one day your limits are in one place and the next day they might be in a completely different place. However, recognizing my triggers and doing what I can do prevent them has made a huge difference in my quality of life.

Also despite these photos I want you all to know that there are days where I can’t move and have to stay in bed and days when I can’t think straight. These are definitely the good days and these photos don’t tell the full story. But, I hope that they inspired you and gave you a couple of ideas for how you can bring a little more joy into your life.

I also wanted to tell you about a new initiative that I am starting. One of the things that makes POTS so hard is it can be you feel disconnected from the world and that is a very hard thing to go through. I wanted to create a space where teens and young adults with POTS can build community and find a space where they are understood, so I created a GroupMe! If you would like to join the GroupMe click here.

I hope all of you have a great day and remember to have grace for yourselves and others!

❤ Ashley