Watercolor painting of a beautiful woman face and flying hummingbirds

The Hummingbird Caged Within My Heart

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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.

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Thinkstock Image By: berdsigns

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What Is POTS, Really?

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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!

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Thinkstock photo via Gala2205.

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

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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.

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

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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.

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What It Means to Live With an Invisible Illness Like POTS

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Sometimes I spend hours trying to think of ways to explain to people what it is like to live with an invisible illness, specifically POTS, but then I stop myself and wonder why I’d even try and explain it because on the outside I am always going to look “normal,” which makes it easy to forget. That’s the thing about living with an invisible illness though – people forget. It’s not their fault and I don’t blame them for it, but they do. They forget.

***

POTS stands for postural orthostatic tachycardia syndrome. Try pronouncing that one out loud. Trying to pronounce postural orthostatic tachycardia syndrome is kind of what it feels like to try to explain what it is or how it affects those who have it to those who have never heard of it before. Hell, I couldn’t explain it to myself or doctors for almost four years and most days I still struggle with it.

Have you ever experienced one of those times where you stood up and said, “Whoa…I just stood up way too fast,” because you got a head rush and suddenly lightheaded? Living with POTS is feeling like this every time you stand up.

Or have you ever done the stair-master at the gym for 20 minutes and gotten off out of breath, your heart rate spiking up, and you needed to take a break? When you live with POTS, this is what it feels like every time you walk up one flight of stairs.

It feels like taking the elevator up one floor and having people stare at you silently (or even sometimes not silently) and judging you for being “lazy.”

Living with POTS consists of weird habits, like drowning your food in salt because the doctor says it might help you feel a little bit better. Or carrying around your 32 oz. water bottle everywhere you go. And when I say everywhere, I mean everywhere, even to the bathroom at work (gross). Or standing up and waiting 15 seconds before actually walking anywhere because you need to make sure your body isn’t going to stop working before you start moving.

It consists of canceling plans last minute because your body gave up on you out of what seems like nowhere and having to make up an excuse because “I just don’t feel well” doesn’t feel like it’s cutting it anymore.

It consists of leaving a conversation midway through to “use the restroom,” when in reality you just need to sit down because you can feel your legs starting to shake, the weight of bricks on your chest and your heart rate spiking up to 130 BPM (and that’s on a good day). Mix this with one of your biggest fears – passing out, especially in public – and you have the making for one anxious recipe.

It consists of seeing a flight of stairs and having to stop and think about how you are going to feel before, during and after you climb those two flights, which to you feel like a mountain.

It consists of having to plan around what your body might be able to handle, but even that will likely end up being too much.

It consists of seeing pictures of friends traveling, hiking or even just taking a long walk on a nice day and wondering when you will be able to enjoy life’s simple pleasures again.

It means that a good day is when you can grocery shop, clean your room and meal prep (while standing up!) – all after work!

It consists of going to doctor after doctor, specialist after specialist and being told, “Here’s what we can try…” but it may or may not – and probably won’t – help you feel better.

It means that, despite the amount of time you spend lying down, “relaxing” is something your body rarely does. Mostly because of horrible anxiety about everything going on with your body, but also because that’s just not how your autonomic nervous system works.

It means not being able to explain to people why your body is able to do something one day but not on another day because one of the only methods, even in the medical world, for explaining this is that some days you get less “spoons” than others. (Disclaimer: the “spoon theory” is actually a great way to explain to people what it’s like to live with a chronic illness to those who are looking for a way.)

It means having no idea how you or your body is going to feel any minute of any day.

It means trying to do everything in your power and using every last ounce of energy to appear “normal” to the rest of the world while on the inside you feel like your body is shutting down.

That is what it feels like to be living with an invisible illness, at least to me.

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Why I Used a Wheelchair for the First Time

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Recently, I made the choice to use a wheelchair for the first time, which was a pretty big decision and something I want to talk about. I want to start off this post by saying that choosing how and when to use a wheelchair is an incredibly personal decision, and this is only my own experience.

Why a wheelchair?

Ever since I realized there was a genuine health reason for me being in so much pain, and that I wasn’t being lazy, I’ve been trying to work around it. While I can manage my day-to-day life relatively well, trips away are a massive struggle. Last month, I had what should have been an amazing trip to London planned for my best friend’s 21st birthday — two whole days of sightseeing, shopping and shows. Obviously, with it being such an important birthday, I wanted to make sure she had an amazing time, and that me being tired and in pain didn’t get in the way.

Worries

It’s safe to say I had a lot of worries about starting to use a wheelchair. The practicalities: how do you borrow one? How do you steer it? Where are the brakes? The stigma: what will people think when I ask for one? And when I’m able to stand up out of the chair? And personally, admitting to myself that it was something that I needed on occasion, that it wasn’t a big deal, and that using a wheelchair for a special occasion like this wasn’t making a commitment for the rest of my life.

How did it go?

After chatting with a few friends and browsing museums to find one that rented wheelchairs, I decided to go for it. On arrival at the Natural History Museum I went to the cloakroom, signed a disclaimer, and 30 seconds later was equipped with a wheelchair. After a bit of figuring out how to fit me, my coat and way too many shopping bags in it, we were ready to go.

I started off being pushed, but the lack of control really bothered me, so I decided I was going to push myself which worked much better (after a few incidents getting around corners!) While my arms were so sore the next day, I think that’s something I’d get used to. Practically, it was better than I expected. People were on the whole really polite, happy to move out of the way, and I didn’t notice anyone giving me weird looks or anything. In terms of the museum, it was hard going; I couldn’t see quite a lot of the displays, and trying to find lifts (elevators) was mission impossible.

Overall though, it’s a big thumbs up for the wheelchair. Although it is not something I would want (or need) to use every day at this point, for occasions like this, where I’m trying to pack a lot of activities into a few days, it makes things so much easier. It means I can do so much more without the repercussions, and more importantly (for me at least) I can better keep up with others.

This story was originally published at Irish Dysautonomia.

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