By Skyler, @chronically.challenged 

My name is Skyler, I live in a small town in New York,  and I am 23 years old. I have a form of Dysautonomia called Postural Orthostatic Tachycardia Syndrome (POTS). I was diagnosed with POTS at Cleveland Clinic in Cleveland Ohio on February 5th 2015 (ironically on my 19th birthday). However, I get my emotions out through poetry about living with POTS. I have already had 3 of my poems published and I was nominated for the ‘Rising Star Award’ at the Dysautonomia Support Network’s Patient’s Choice Awards 2019.

Read Laura’s POTS story here

I have had a lot of complications due to POTS and my other chronic illnesses (EDS type 3, seizures, Fibromyalgia, and (possibly – not officially diagnosed yet) Mast Cell Activation Syndrome). I am currently in a wheelchair (an electric one as my shoulders subluxate when I try and propel myself in a manual wheelchair) and use it all the time except for in my house (I’d use it in my house as well but our hallways/doorways are too small). I use forearm crutches or a rollator walker when I know I am going somewhere where it’s not handicap accessible (which isn’t very often).

I am currently considered permanently disabled and am on social security benefits (SSI). I can’t drive (partly because I am legally blind as well), work, or attend college (I want to go to take online classes eventually but right now my symptoms are so bad we don’t think now is the time to start college). I can’t live alone so I have to have a roommate. I currently live with my aunt and uncle (my mother passed away in January 2008 and my father lives in South Carolina and is estranged).

skyler. POTS and poetry

Anyways, my life with POTS (along with my other illnesses) is rough. I faint (on average) around 3 or 4 times per day (used to be more than that). I have seizure-like activity after I faint (while my neurologist thinks their pseudo-seizures and are caused by stress – my cardiologist, my aunt, and I believe their syncope seizures (also known as convulsive syncope).

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I have had numerous injuries due to my fainting and seizure-like events –but the worst one happened last month where I fainted/seizures and broke my right ankle, dislocated it, and tore a tendon and ligament in my ankle all at once. And, since I didn’t think it was a bad issue – maybe a bad sprain – I walked on a broken ankle for 3 days before I went to the ER and got it x-rayed (sometimes I am stubborn when it comes to doctors and such).

I battle with severe dizziness and vertigo 24/7. I can barely walk 10 feet without becoming extremely short of breath and very tachycardic. Sometimes I need help getting undressed or have a helping hand when I shower (thankfully I have a shower chair as well). My aunt is my biggest advocate (I am trying to advocate for myself but I am very shy and leery when it comes to speaking to doctors and such) and is also my caregiver. I am immunodeficient so I have to wear masks while out in public.

skyler. POTS and poetry

Dysautonomia has destroyed my life (or so it seems most days) because I can’t do the things I want to do. I also am constantly reminded of what my life was like before I got sick. I used to be so athletic – I played soccer for 10 years, I loved to roller skate, I loved to go camping and go kayaking, I loved to take long walks and hike. I used to be able to read 4 novels a week and I loved to listen to music. I had tons of friends and was invited to birthday parties and went swimming together. But that was all taken away.

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I can’t play soccer, roller skate, kayak, hike, or take walks due to severe exercise intolerance and fainting/seizures every time I am active. I can’t concentrate enough to read anymore (plus it gives me terrible headaches). I can listen to music but it has to be on low volume because it gives me headaches. I lost all my friends and am never invited anywhere or anything. I scroll through Facebook and see my “friends’ getting married, having kids, going on adventures, moving out of their parent’s house, or being in relationships.

skyler. POTS poetry
Skyler during pre-synscope

However, I get my emotions out through poetry. I have already had 3 of my poems published and I was nominated for the “Rising Star Award’ at the Dysautonomia Support Network’s Patient’s Choice Awards 2019 (I didn’t win – but it was just a great honor to even receiving the nomination).

Read Syler’s poem, The Invisible Fight here

skyler

Skyler is a gay non-binary individual who grew up just outside the Adirondack Mountains in NY. They were nominated for the Rising Star Award in Dysautonomia Support Networks Patient’s Choice Awards 2019. You can follow Skyler on Instagram or Facebook.

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