By Skyler, @chronically.challenged
My name is Skyler (birth name Hannah), 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). 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).
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). 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.
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. 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.
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).
So, instead of going on about my life with Dysautonomia – I am going to share a poem I wrote about my life with POTS.
The Invisible Fight
Spinning, swaying, blood draining from my head
This is the feeling that I absolutely fret and dread
This chronic pain has become too much that I can take
Why cannot my body give me a much needed break?
Heart pounding as hard as a punk band’s drum
My hands and feet turn cold, blue, and painfully numb
Dizzy, weak, and feel like I need to try to sleep
But, instead, I lay in my cocoon bed and silently weep
Sometimes I feel like I cause so much strife
As this illness takes over my entire adult life
What have I done to deserve this never ending pain?
I think I have no reason to try and nothing left to gain
Slurring speech and a deeply frozen mind
My independence is now gone, I’ve come to find
Why has my life been taken from me?
All I want is to be healthy, content, and free
Is that really too much that I’m asking for?
I’m sick of fainting on the cold, hard floor
Isolated and fearful is how I often feel
Why cannot my broken body just try and begin to heal?
Being a burden has pierced the membrane of my mind
Is there anything left of the old me that I can still find?
I feel as if my brain with rupture or perhaps explode
“I’m sorry, but I cannot help you” I have too often been told
Sometimes I feel like I have to hide and lie
As I slowly feel like I am dying on the inside
My body is in agony and no one can tell me why
As I realize this is my new life, I begin to breakdown and cry
I am in the process of losing my once good health
It feels as if my body is literally attacking itself
Why cannot I be normal and go out with my friends?
My social life has come to an abrupt and sudden end
Remember, what you see isn’t always what it seems
This illness has completely crushed and ripped up my dreams
Black spots fill my vision as I try to get up and stand
I really need someone to lend me their outstretched hand
I have dealt with this syndrome for far, far too long
However, I don’t feel that courageous or even close to strong
I cannot read and I often cannot even try and think
It’s as if my health was gone in a single, quick blink
My symptoms have often given me quite a big scare
I feel as if all of this is unreal and totally unfair
Sometimes I feel that I’m only going downhill from here
I try and smile and not show any distress or fear
I wish I could live and have my life as it were
Dysautonomia needs awareness and a much needed cure
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.