Real People With Dysautonomia: Michaelene

For some people who contracted COVID, it was mild.  Some even had no symptoms at all.  For many, that wasn’t the case.

Long covid is where symptoms of covid19 persist long after the virus has left your body.  Symptoms range for many people, but in general they are: difficulty concentrating, depression/anxiety, headache, sleep disturbances, dizziness, changes in smell or taste, and more.

In April of 2020, Michaelene, now 49, contracted covid, and her life changed forever.

After Covid, my health took a turn for the worse. My heart rate would increase rapidly every time I stood up and I would get dizzy. It became so bad that I could barely get out of bed. I had to crawl to get to the bathroom and sit to shower.

Michaelene soon discovered she had a condition called POTS, or postural orthostatic tachycardia syndrome, which is a form of dysautonomia, or a dysfunction of the autonomic nervous system.  Studies have shown that anywhere from 10% - 40% of people with long covid may have triggered dysautonomia.  Learn more about that in our blog “Is it Long Covid or POTS”.  Michaelene was one of those people.

I was diagnosed with POTS in October 2020 after a bout with Covid. I am also diagnosed with long covid, MCAS, migraines and autonomic dysfunction.  I was lucky that my primary care doctor was knowledgeable and picked up autonomic dysfunction with a standing test (often called a poor man’s tilt table test) after all my other tests came back normal. She referred me to a specialist. The wait was 6 months and another 4 months before I could get my tilt table test for confirmation.  I was diagnosed with POTS within a year.

I did my research before seeing my primary care physician. I told my husband that I thought I had POTS after reading up about it and doing a standing test at home. When the doctor mentioned autonomic dysfunction, I just looked at him, smiled and said “I told you so!”

Before Michaelene’s life was turned upside down by her health she was a special education paraeducator.  In April of 2020 she left her job so she could focus on her health.  She’s still struggling to get approved for disability, having been rejected twice.  Something this writer often hears from the dysautonomia community.

My family is so supportive of me and helps any way that they can.  I have an amazing husband, Dewey and two kids: JD and Izzy.  I met my husband at Disney World and moved in with him a month later. We were married 6 months after that.. That was 24 years ago. The most magical place on earth is truly magical for us and we visit as often as we can. He says I am the best souvenir he could have brought home from his trip!

Family is important when you have any chronic illness.  You also have to learn to manage your symptoms.  We know that one accepted way to manage symptoms of POTS is to up your sodium or salt intake.  Michaelene is still learning what works best for her.

Today I am using compression, salt, electrolytes and fluids to help. I have tried medications but none have really helped. I was using IV infusions to help but my veins are struggling. 

A bit of an advocate for educating people on POTS, Michaelene says:

Lately,  I have been working on advocating for people like me who are dealing with long covid, POTS and other chronic illnesses.  I am open about what I am going through. I tell people what POTS is and that even though I may look normal, my body does not react and work like a normal person does.  I take every chance to educate people on POTS and how it affects my everyday life.

  

She hasn’t let her diagnosis steal her joy.  When Michaelene has increased energy she enjoys cooking.

My kitchen was always my happy place. When I have the energy, you will find me on my stool trying to cook for my family.  I lost my mother to cancer when she was 56 years old. It was quick and unexpected. It taught me to not sweat the small stuff and to cherish every day.

Her motto is “Carpe Diem” which means “Seize the Day”.