Staying Positive Despite POTS

I am a 42 year old registered nurse, homeschooling mother of four, and lover of nature and books. I live with a mind that wants to do all the things, all the time and a body that wants to take a nap every minute of every day.

I have been living with hyperadrenergic POTS since I was a teenager. I also have Ehlers-Danlos syndrome, mast cell activation syndrome (MCAS), and Raynauds. I never knew why my heart raced or why I would faint in the heat or when standing too long. I once accidentally started a massive prayer vigil because I kneeled down to keep from fainting at a 9/11 memorial service. It made the local news. Doctors suggested I eat salt and have lighter periods (seriously). 

When I was 38 all my symptoms became much worse. I found myself so tired all the time that I once fell asleep in a pile of Legos while drinking a cup of coffee. I began experiencing debilitating cognitive symptoms to the point of worrying I had early onset dementia— trouble finding words, inability to solve basic math problems, and difficulty speaking. I had what felt like fight or flight reactions all day, every day. One day I sat in the floor in front of the kitchen sink crying because I couldn’t stand to do the dishes. Then, I found my diagnosis.

I will never forget the day I figured it all out. I had been crying to my husband that I just couldn’t handle life anymore. I was so tired and overwhelmed. I couldn’t figure out why I had gone from such a capable person to a complete disaster so quickly. That’s when I Googled “soul sucking exhaustion” and everything finally made sense. I found an article by a POTS specialist stating that exhaustion was the number one complaint he received from his patients. The more I read, the more it all made perfect sense. I called my primary care practitioner, she researched and agreed. From there I went straight to cardiology and a dysautonomia clinic. 

After that, everything began to get better. I started a magic pill- a beta blocker, and suddenly felt like myself again. I learned to drink two liters of water a day, wear compression, and respect my limits. I discovered the Levine and CHOPS  exercise protocol for improving POTS symptoms and dove right in. The training was hard, but worth it. I was eventually able to wean off my medication, and am now able to use it only once a week or so. 

POTS taught me to be a kinder person, not just to myself, but to others. I hung my Superwoman cape in the back of my closet and eventually tossed it out completely. When I see someone waiting five minutes on a closer parking spot- I remind myself of the day that I struggled to get my shopping cart to my car without passing out and all the tear filled days just like it. I look completely normal and healthy, but underneath it all is a woman who fights hard every day to be able to do the things she loves. I will never again judge a person’s abilities by their appearance, and I will absolutely offer compassion no matter what. 

My advice to anyone with POTS is to stay active and positive. I always say that inactivity is the kiss of death for POTS patients. It only takes a few days to start deconditioning, but it takes a lot longer rehabilitate. In my case, I had just been sick with pneumonia and also started working more at a desk job. I believe this combo triggered my rapid decline. Do whatever activity you can. If you are bed bound, start stretching, use an arm cycle, build up to sitting and using a desk cycle and some resistance bands. Whatever little bit of activity you can handle, do it, then do more. The more you do, the more you’ll be able to do.

Focus on the positive. When I worked in the hospital, patients with a positive attitude always had better outcomes than their negative counterparts. There is so much power in focusing on the positive! And if you can’t bring yourself to feel positive about your own situation, find someone else to encourage. Positivity and encouragement are contagious. I promise that lifting up someone else, will help you just as much as it does them. 

And lastly, just keep going. Never give up. Ask for help if you need it. You can even ask me! Just do not ever give up. Here are two quotes from a book a wonderful friend gave me that mean so much to me.

“Asking for help isn’t giving up……it is refusing to give up.”

“Sometimes just getting up and carrying on is brave and magnificent” ~Charlie Mackesy