Water color image of a woman with brown hair.

When I Told Myself POTS Is 'No Big Deal'

224
224
3

“No big deal.” These three words mock me now. They haunt me on a daily basis. Three apparitions of a life that is now dead and buried.

In my past life I was an overactive overachiever. A certified group fitness instructor, personal trainer, and health coach. I often taught three or more classes a day. No big deal. Those three words were even my mantra in my classes. When I pushed my cycle students to add more gear or increase their pace, “No big deal.”

When I told my strength training students to add more weight, “No big deal.” When I told the kickboxing class they had one more round of Tabata left, “No big deal.” Many of my students joked I should have t-shirts made with that slogan. The point of “no big deal” was that I wanted them to mentally minimize the pain or struggle in favor of the gains. Push yourself beyond what your self imposed limits are and that is where greatness is achieved.

Fast forward to a long bout of mycoplasma pneumonia coupled with two bouts of shingles. A two month clash of illnesses that would forever alter the course of my life. Once the pneumonia and shingles had passed, I was still left feeling sick. I knew something was off, but was told by doctors that my body was just recovering. But wouldn’t recovery indicate forward progression?

My fatigue turned into shortness of breath and heart palpitations. I was always lightheaded and dizzy, and even fainted and collapsed at times. I began to have migraines and trouble sleeping at night, waking up with severe nausea. I went back to the doctors. I saw a cardiologist, neurologist, ENT, and endocrinologist. I was perfectly healthy. But I knew I wasn’t healthy. After months of searching for answers, an electrophysiologist finally diagnosed me with postural orthostatic tachycardia syndrome (POTS).

POTS. I remember thinking, “POTS, no big deal.” They will fix all my symptoms and I will get back to my life. But POTS, as it turns out, is a big f***ing deal.

Before coming down with pneumonia, I had recently returned to a desk job while still teaching several group fitness classes a week. Thankfully, my job allows me the option to telework on an ad hoc basis. I went from making it into work every day, to only several days, to barely showing my face there at all.

A few weeks ago, my electrophysiologist suggested that I limit my driving, therefore forcing me into teleworking full time. No big deal.

No big deal as I stare at the same four walls every day. No big deal that my co-workers are now cats. No big deal that I have almost zero human interaction on a daily basis, except with my boyfriend who is a police officer, who works the night shift…And therefore completely different hours than me. No. Big. Deal.

I now only teach one fitness class, my beloved Saturday morning cycle. Waking up, driving to the gym, kicking butt during class, and then going about my day. All of which used to be no big deal. Now those same things are a very big deal. I never know how I will feel when I wake up. Is today going to be a good day or an extremely symptomatic one? Or will it fall somewhere in between? Will I be OK to drive? Will I survive 45 minutes on the bike? And will that be all of the effort I am able to expunge for the entire day or weekend?

What about household chores? The things most people do on a daily basis that they don’t even think twice about. Cooking, cleaning, laundry, taking out the trash. No big deal, right? Now any one of those things can completely exhaust me or cause me to have an episode. Often I can’t even finish the single chore I have started. Maintaining the house is now a very big deal.

Let’s not forget personal upkeep. You know, the basics such as showering, brushing your teeth, and blow drying your hair. No big deal. Now I often end up on the shower floor and forgo putting any additional effort into my appearance. My hair rarely sees a blow dryer. I rarely put makeup on, or pants without elastic. Forget about maintaining the house – maintaining myself has become a very big deal.

I’ve even had people tell me POTS is no big deal, “How bad can it be anyway? You don’t look sick. The other day I saw you with makeup on with your hair curled and you seemed completely fine.” Yes, but what they didn’t see is later that day when I was in the fetal position in bed, barely able to function because I overexerted myself. No. Big. Deal.

Hopefully through all of this rambling you have picked up on the common thread. For someone with POTS, everything is a big deal. The things we took for granted pre-POTS now mock us with how difficult they have become. I used to live life like it was no big deal. You worked hard and you played hard. Now both work and play, and everything in between, is a big deal.

I’m starting to come to terms with my new “normal.” I’m starting to celebrate the little victories, “Hey, I made dinner and did two loads of laundry tonight. It was no big deal.” Or, “Look at me, I stood up for 30 minutes and didn’t collapse. No big deal.” Those words are ironic now and I use them purposefully that way, because every victory is a very big deal. Every good day is a very big deal.

My battle with POTS is still fairly new. I’m not even quite through the grieving process and still seem to be stuck somewhere between the anger and fear phase. I’m still angry that I have this syndrome and I’m angry at how drastically it has altered my life. And I now fear doing the things that used to be no big deal to me.

But one thing I do know, is I’m not going to let it defeat me. There will be days when POTS wins, but there also will be days when I win. What I have to keep in mind is my life, whether now infiltrated by POTS or not, is a very big deal. And while POTS thinks I’m no big deal, I think I’m a big f***ing deal. And what I think matters more than what POTS does to me.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: bruniewska

224
224
3

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

What Life With POTS Looks Like After You've Left the Doctor's Office

7
7
0

We all know the symptoms of postural orthostatic tachycardia syndrome (POTS): tachycardia, dizzy spells, nausea, fatigue and, in some cases, blackouts. Living with POTS means juggling a range of symptoms, so what is it really like to live with POTS after you’ve left the doctor’s office?

1. It means forgetting what you needed from the shop because you only went to get three things, so you thought you didn’t need to make a list.

2. It’s not being able to work due to fluctuating symptoms and it means explaining to people over and over again why you don’t have a job.

3. It means having nightmares every night and waking up feeling like you haven’t slept at all, even though you’ve slept for 12 hours.

4. It means planning every activity around your symptoms, which is exhausting in itself.

5. It means taking medications to treat the side effects of other medications.

6. It means avoiding foods and drinks that can worsen your symptoms, such as alcohol, caffeine and sugar.

7. As a young woman, it means considering when and if you want to start a family.

8. It’s going out with a full face of make-up because you don’t want people to see how washed out and tired you look.

9. It’s wondering whether you believe your doctor when he says you’ll be better by the time you’re 30.

cupcake with number '30' on it

Although POTS is not a life-threatening condition, it is definitely a life-changing condition.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via akinbostanci.

7
7
0
TOPICS
, Contributor list
JOIN THE CONVERSATION
Watercolor painting of a beautiful woman face and flying hummingbirds

The Hummingbird Caged Within My Heart

34
34
1

A hummingbird is living inside my chest.

She has built a nest inside my rib cage. Some days she is content to flit around at home, and I barely register she’s there, flying. She’s always flying it seems. Once, when I was little, I heard that hummingbirds stay in flight even while they are asleep. I’m not sure if that is true. The hummingbird’s wings beat life into my body so, if not, she must be the exception to the rule.

I heard once that the hummingbird has the fastest heartbeat of all animals.

That one is true. A hummingbird heart can beat up to 1,200 beats per minute (bpm) during flight, 200 bpm at rest. It would be over-dramatic to say that I can relate.

Sometimes, though, I imagine that I’m a hummingbird, too. If I were, my body would be considered normal for my species.

There are days when my heart beats too fast. When the hummingbird has set her mind to break free, and I can feel her ramming her little bird body against my chest wall, beating her wings frantically. Help. Help. Help.

It feels like she’s going to burst right through. That any moment she’s going to rip through my skin as if it was tissue paper. She’ll thrust into the sky, and, without her, my body will merely ride the waves of air from her wake straight to the ground.

The reality is both more and less violent. My heart stays put, but I’m out in public waving my arm in front of me reaching and trying desperately to prop myself up or grasp onto something because I am losing my vision. I know what happens when black spots crawl out from the corners of my eyes and I have only a few seconds to act before my body revolts.

The hummingbird’s cry has spread to my legs and arms. They jerk and spasm. I can aim them in a general direction, but I cannot see where to put them, which does little good for me if I haven’t found a safe place to land yet. I don’t want to hit the ground. I don’t want to be the lady who faints at the graduate reception or work or on the sidewalk, alone. I sweat, and I shake. I hear echoes of the world around me but mostly just the ringing of the hummingbird’s battle cry. It sounds like a chime choir at Christmas. Even when I fall down, I guess I technically win, the hummingbird didn’t escape. I leave the scene of the battle as quickly and as discretely as possible.

Most days the bird’s attempts to escape are less intense, more predictable. When the bird throws herself against my chest, my hands shake. My body shivers. A part of me is always a little afraid. I avoid stairs; I avoid walking, When walking is unavoidable, I have to lean or hold onto things, and so much energy is spent concentrated on merely keeping my balance. I’ll mutter soothing words to try to calm the little bird, because I know that she, too, is afraid. Just breathe. Breathe. Breathe.

I don’t want a hummingbird in my chest. She wants to fly, and I want to be able to hike and run and soar again. There are days when it is a struggle to make it from the bed to the bathroom. There are days when I can pass as healthy – when I get nasty looks for taking the elevator to the third floor as a young, skinny apparently able-bodied person. There are days when I can take the stairs and days when I only think I can. The days when you find out you’re not capable of doing what you felt you possessed the spoons or the energy for are the hardest.

I have postural orthostatic tachycardia syndrome (POTS). If I am trying to diminish the condition, I’ll joke that POTS causes me to sometimes faint if I stand up too fast. That isn’t what it’s really like at all. My heart jumps more than 30 bpm from its current rate if I go from lying down to sitting, or from sitting to standing. Sometimes it’s well over 100 bpm even while I’m just at rest.

I have hot flashes and cold flashes. I’ll sweat with no activity. My body will transform the act of trying to shuffle from my bed to the bathroom into a marathon. If I drop something on the ground, there’s always a moment where I have to check in with my body and consider whether reaching down to pick it up will cause me to collapse. If there is a chance I’ll go down, an internal debate ensues on whether that pen or my phone or my keys are worth that risk. I have gotten quite adept at scooping things up with my feet.

I would never name my hummingbird “POTS,” but having a hummingbird that lives inside my chest is the best way I know to convey how it feels living with POTS. You cannot blame a caged bird for wanting to be free, nor can you predict how or when it will try to escape next.

It’s not the hummingbird’s fault.

I also wish I were free.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: berdsigns

34
34
1

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

What Is POTS, Really?

56
56
0

Today I was diagnosed with postural orthostatic tachycardia syndrome. The number one question people ask me is: What is POTS? That’s a complex answer; here is my definition. For me, a POTS diagnosis has been a huge answer at the end of a dark tunnel, but it has also opened a Pandora’s box I didn’t even know existed. What is POTS?

POTS is the blue feet you’ve wondered about for years. It’s the racing heart rate every doctor but one tried to write off. POTS is having to withdraw from school because you can’t get out of bed and certainly can’t keep up with college courses. It’s having blood pressure that bottoms out in the hospital and has nurses in a fit because your heart rate is still too high. POTS is all of this and so much more.

POTS is your doctor looking you in the face and telling you she doesn’t know how to treat you and is “going to try” to find a doctor who can. It’s your insurance telling you that you’re maxing benefits and it’s only March. POTS is the fourth nap you’ve taken today but still you don’t have the energy a 19-year-old should have. It’s the headache that never goes away and the ever-growing pill box on the counter. POTS is the dizziness you feel when you stand up – the roller coaster you never wanted to ride. It’s a complex syndrome that has no cause and is still relatively new. POTS has no cure. POTS has no one treatment.

POTS patients don’t want your sympathy, they just want you to understand that it takes about three times as much effort to do anything than it would a normal person. This is because in POTS patients our blood is thick like molasses and settles – sometimes walking can feel like running a marathon. Be understanding, we may need a minute to adjust or to rest; please don’t rush us. Most importantly, please ask us questions. I know with my family I would prefer they ask me over Google because I’m more accurate with my personal symptoms. Thank you for understanding!

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Gala2205.

56
56
0
TOPICS
JOIN THE CONVERSATION

To the People Supporting Me, From the Girl With the Chronic Illness

51
51
0

Mom,

You don’t have to be sorry. This isn’t your fault. Finally having a diagnosis is the best thing ever, but there’s no reason to say “sorry.” I’ve felt this way for months, years, days. Nothing has changed. The only thing different is, I have a diagnosis. It’s something to be happy about. Yes, I cried. They were tears of relief and not knowing what is next. The days to come are going to be the same. I’m going to have good days and bad days. Now we can better treat my symptoms. Yes, I’m getting more symptoms and they are worsening. Please don’t be sorry. Don’t blame yourself for this. Yes, the doctor told us that since I didn’t have any kind of injury, it was genetics. And since you have been sick your entire life, you blamed yourself. This isn’t your fault. This is who I am, I’m learning to cope with it now.

Family members,

Thank you for all your well wishes and positive vibes. You don’t have to say the famous quotem “Get better soon!” because in reality, I won’t. What I have is life-long, hence the term “chronic.” I know you all mean well and want me to feel better. But please don’t say those three simple words. They are great from someone who has something that’s cure-able, but I don’t have that. I know you want me to be who I used to be, the happy, energetic kid at all the family gatherings. That’s not me anymore. That’s what chronic illnesses can do to you. Yes, all the family gatherings centered around food are going to be tough for me, but with your support I can get through this.

Old friends,

I know I’m not the person I used to be, thank you to the ones that stuck around. You all knew I was slowly getting a little sicker since you first met me, but you must have thought nothing of it. Until it took over my life. I’m sorry that I medical stuff was all I had to talk about for a little while. I couldn’t think of anything else to talk about. (The brain fog is real.) You left me alone for a while and I understand why. I was boring. I couldn’t go out and do “normal” college things. I’m sorry for that, but I hope you understand why I can’t do those things now.

New friends,

Thank you for ignoring my medical issues and pretending they’re not a thing. Thank you for understanding that I can’t stay out still 2 a.m. Thank you to the one person who understands all the medical stuff and will sit and listen to me complain about doctors and symptoms for hours. You all mean the world to me. You all knew that I wasn’t completely healthy when you met me, but thanks for sticking around when you didn’t have to.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: Natalia-flurno

51
51
0
TOPICS
JOIN THE CONVERSATION

Why I Choose to Celebrate the Anniversary of the Day I Became Sick

104
104
2

Two years ago today, I got sick – but today is a celebration. Let me explain why.

At first, I just wanted to figure out what was wrong with me. Then, I just wanted to get better. A lot of days I just want to be off meds and be “normal.” I also wanted to be able to do what I wanted, whenever I wanted. So many questions have gone through my mind in the last two years:

“Why me?”

“When will I get better?”

“Why did God choose me to get sick?”

“Why can’t the doctors make me better?”

“Why do we keep changing medicine if I’m doing good?”

“Why don’t people believe me?”

“Why do I get dirty looks when I’m in a wheelchair?”

“Why can’t they understand that it’s an invisible disease?”

“How long am I going to deal with this symptom?”

“Why do people makes jokes?”

“Is that ringing noise in my head this time?”

“Are those lights actually flickering?”

“Am I about to have a seizure?”

“What is happening?”

“Should I say something if I feel bad? I don’t want to make a big scene.”

I have honestly tried to block out most of the memories because they are too painful. There were so many days that I could barely function and I thought I was going to die. Many of you probably remember that I was homeschooled for a little while because things got so bad. I went from modeling to mottling.

I could feel sorry for myself and allow myself to get worse, or I could see the positive in my situation and move forward, which is what I choose to do. It sounds like a motivational speech, but there really are a lot of really positive things that have happened in the last two years because of being sick.

First, I learned who my true friends were. Yeah, it was hard to lose people in my life. But, I learned that the ones worth having are there for me when I’m too sick for school, will always call to check on me, will lay in bed with me while I get an IV even though they are terrified of needles, or will face time me to watch home videos with me just because I’m sad or in pain. I have gained the best friends in my life from getting sick, especially my very best friend in the world, which I could have never survived my worst times without.

To my best friend: I am thankful for you every single day. I truly wouldn’t have made it this far without you. I wouldn’t be here if it weren’t for your unconditional friendship. You are irreplaceable to me.

For the people who faded: I’m not mad. I understand that you just couldn’t deal with it, and I don’t have any hard feelings toward you.

Second, I learned how many kids there are out there who are hurting from diseases. I have met so many wonderful people and new friends with illnesses that I would have never met unless I became sick. Some days I can cheer them up, and other days, I need them to cheer me on. I have become an advocate of invisible illnesses and supporter for anyone who needs me by becoming a writer for “Card for Warriors,” which I wouldn’t know about if I didn’t get sick.

I have raised awareness to hundreds if not thousands of people. Not just about my illness, but all invisible illnesses. Everyone is fighting some sort of battle. Be there for someone who needs you, even if it’s just to check in and ask if they are OK. You might change their entire world with a single text.

Another thing I’ve learned is that I am stronger than I ever knew I could be, because I didn’t have any other choice. On days I struggled to get out of bed, I went to practice. On days I didn’t think I could walk, I went to school. You will never know how strong you can be until your body and mind force you to be stronger than you know how.

I’ve learned to laugh about everything because there is always something worth smiling about. Making jokes about the things I do and go through just makes things easier. I mean, who wants to be sad all the time when you can just laugh at yourself and move on? So what if I put my shoes in the laundry basket and my laundry in the fridge because I have brain fog? It’s still funny right? Also, can you say that you dance with an IV pole?

Most importantly, if I didn’t get sick and learn what really mattered in life, I wouldn’t have the most amazing guy that I get to call mine. It took being in a terrible place to understand that the guys worth having are there for you 100 percent of the time, not just when you can be “fun” and “cute.” I know without a doubt every single day that I wake up that he will love me and be with me if I am happy, hyper, and model worthy, or if I can’t get out of bed, and look like hell. I never doubt that he will be by my side. He is willing to take care of me when I need him to and sit through hours of doctors appointments. He knows my medication schedules by heart and is there every single time I need him, just because he loves me.

So, for all of the things that have happened to me in the last two years, I am thankful because I’m a better and more compassionate person. It sounds odd, but I wouldn’t trade them for anything. The best things in my life have come from getting sick and learning what really matters in life.

Today, please celebrate with me, for the better person I have become, and let my story help each of you to be the very best you that you can be. Be a fighter, be a giver, and be someone who loves with everything they can – because disease or not, none of us are promised tomorrow.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: DeepGreen

104
104
2
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.