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I Will Never Give Up on Myself: Getting POTS after COVID-19

Jennifer, age 29, Illinois

I've been living with POTS, Dysautonomia and Long COVID for a year so far. I caught COVID around December 29, 2021 - only a few days till the New Year. I was very hopeful and had many goals and dreams that I wanted to accomplish. I had a job that I loved very much. I also was given the opportunity to share my art around the city with many beautiful people and I couldn't have had it any other way. I was convinced that 2022 was going to be my year that I would flourish. During the infection, I had mild symptoms until I began to experience chest pain, high heart rate & a semi-collapsed lung. Went to the hospital and was told I was fine and to rest up. I had recovered within the week and decided to continue my life and go back to work. Three weeks later my resting heart rate was sitting at 130 and as months went on, I had tachycardia  and weakness.  I began to experience blood pooling, tremors, and severe brain fog. My pupils were dilating differently, there were severe changes in blood pressure, I couldn’t walk well all of a sudden and I also developed exercise intolerance as time went on. I wouldn't walk 10 steps without almost collapsing and began to experience what it felt like more than than 30 symptoms going on at the same time. It was really scary after being perfectly healthy. Technically up to this day, all my labs still say I'm 100% healthy.

My whole life had changed in a matter of months and I wasn't sure what to think of this situation, how to process it, or if I was even going through live through this. I was afraid to die, I was afraid to be left alone at home and I didn’t understand what was happening to me. I was afraid of what every single day had in store for me and didn't know if I even had the strength to pull through this. I lost my job, I lost everything I had ever worked hard for. I went to the ER more than 60 times and all those times I would be sent home because nothing was ever found in any lab test. During the middle of 2022, I was diagnosed with POTS/Dysautonomia and Long COVID. POTS post viral and its relationship with Long COVID at the moment is still very not well understood. Some people have recovered and some haven't. 1 in 10 people develop POTS/Dysautonomia/Long COVID post COVID-19 infection.

I  want to create awareness of the new relationship between Long COVID, POTS and other autoimmune conditions happening in many people and want to share what I personally have gone through. As far as Long COVID symptoms, I have experienced burning arms, dementia like symptoms, partial seizures, and much more. Some of these have gotten better but POTS/dysautonomia still persist. I started speaking to others in online communities who experienced POTS and have received tons of helpful tips like how to shower, electrolytes, compression socks, and more! All the stories were equally inspiring. I had built up acceptance and courage inside of me after reading many positive stories from people living with POTS/Dysautonomia/Long COVID and as uncomfortable as the symptoms are, all these people are still able to live their lives and thrive and smile. “I'm not going to give up on myself” I said, and swore to myself I would thrive and flourish. I want to inspire others and myself that anything is possible.

This has been a difficult journey for me, I have so much respect for all the POTsies out there and anyone with chronic illness in general. Its not easy at all and the stigma of being productive all the time has been challenging to let go of. The universe lent me the strength I didn't know I had, along with the support of my family and the few of the friends, and all my health practitioners, psychiatrist, & the whole team for walking alongside me. I'm slowly beginning to work my way into exercise. Today I can exercise about 5 days a week 30 mins in on the floor for now. Some days can be good and some are bad. I started visiting grocery stores little by little. My lifestyle is very different now. I take my time, I move slow, I take breaks, I forgive myself more often and I'm learning to be kinder with myself. I've been extra grateful for life, I've held my loved ones closer, I began doing Art Therapy and took up new lessons in things I really want to learn this year. I found happiness in the little things and live each day with intention. Remember when I said 2022 was the year I would flourish? Its coming true. I have been expressing my story and art to inspire others who are new to POTS, Long COVID, and Dysautonomia to never give up no matter how deep and difficult this gets. I lost everything but never lost my spirit. I still have a Long way to go and I'm still learning a lot of new things but I'm confident that ill be able to do it all. The real journey that matters is the one within. Blessings to you all!

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