My Life, My Reality, My Normal

Being bound to my bed most of the time, I watch a lot of YouTube videos. Particularly vloggers because they bring me out of my own life for a little while and even let me live vicariously through them. I’ve been battling one chronic illness or another for most of my life. I’d be lying if I said I remembered what it was like to be a functional, able-bodied human in society. So, sometimes, when I watch these 100% healthy vloggers, it amazes me that they’re able to get so much done in one day.

It amazes me that they’re able to sleep through the night and wake up refreshed, ready to take on their day. It amazes me that they can finish a full breakfast and keep it down, clean their entire house, and still have the energy to go grocery shopping, all before noon. It amazes me that travel vloggers can visit a new place every few days and not be limited by motion sickness, fatigue, blood pooling, pre-syncope, and all of the other symptoms I start to feel as soon as I wake up at night (yes, at night, because that’s how messed up my sleep schedule is).

I have to admit, I find myself a little jealous… Though I wouldn’t change who I am or the experiences I’ve had, I’m jealous because they’re living the life my younger self pictured for present me. I’m twenty years old. Spending 90% of my time in my childhood bedroom is not where I thought I would be by now. I’m supposed to be in a dorm in New York University (younger me actually wanted Harvard), arguing with my roommate over whose turn it is to take out the trash. I’m supposed to be applying to grad schools, worrying too much about my grades, and going home on weekends to do laundry. I’m supposed to be figuring out who I am, making lifelong friends, and absorbing everything I possibly can in what little time I have left before I graduate.

I am not supposed to be spending my Tuesday night researching the risks for regular IV infusions. I am not supposed to have eight tabs open consisting of blog posts detailing each person’s experience with their chest ports. I am not supposed to be making a pro/con list for applying for a service dog. I am not supposed to be bookmarking a shower chair I intend on ordering, or researching different wheelchair styles to find what will best suit my needs. Yet here I am, at eight o’clock in the morning, doing all of these things because this is my life. This is my reality. This is my normal.

Don’t get me wrong, I am not complaining, nor am I seeking pity! Like I’m always saying, I’m grateful for the experiences I’ve had and life lessons I’ve learned because of my chronic illnesses. However, watching so many people live their lives in ways that I simply…can’t has a tendency to make me reflect on what my life would have been like had I been just a few seconds earlier getting to my locker that day in the seventh grade.


My High School Violated My Privacy

When I was still in school, I was a frequent flyer in the nurse’s office. In fact, I was in there so often that I knew where everything was. When the nurses were busy with other kids, I would help by fetching saltine crackers and ice packs and whatever else they needed (unless it was from the pill cabinet, of course).

There were always two nurses, one at the front of the room and the other in the back. I always favored the one in the back because she was so much more compassionate and understanding of the mysterious injuries and symptoms that my many specialists didn’t know what to do with at the time. The one at the front, however, clearly thought I was just trying to go home early, like I vomited in front of my entire class for fun or something… I get some students just don’t like gym class, but I wasn’t out of shape and I was not one of those kids that avoided physical activity like the plague. I was literally just physically unable to run the mile in the heat without feeling like I was going to die…

Anyway, the real reason my family and I did not like the nurse at the front of the room is because, when I finally got my diagnosis of POTS (Postural Orthostatic Tachycardia Syndrome), she still did not believe me, so she took it upon herself to contact a few of the doctors I’ve seen. There was one doctor that I didn’t actually end up seeing, but she still took it upon herself to reply to the nurse with false information. The other was a doctor I only met with for a consultation. This doctor believed I had Reflex Neurovascular Dystrophy and immediately wanted to enroll me in his physical therapy program. When we found out more about said physical therapy program, we noped the hell out of that situation! Keep in mind, that doctor does not believe in POTS, and whenever my mom and I had questions for him during the consultation, he deflected with magic tricks. (The magic tricks were pretty cool, though, not gonna lie.)

So the nurse contacted the RND specialist, who of course said I do not have POTS, that he does not believe POTS exists, and that I had no reason to be missing so much school. This guy saw me for all of thirty minutes (at most) at least six months prior to when the nurse called him. Are we having fun yet?

Long story short, my mom finds out the nurse also tried to contact my POTS doctor, who refused to disclose any information pertaining to my case without express permission (which is what the other doctors should have done). I don’t know the exact order in which all of this occurred because this was about six or seven years ago and, you know, brain fog and memory issues, but an argument ensued between the school and my mom, letters were exchanged between my mom, the school, and all of the doctors, and I was eventually transferred to a team of lovely people in my high school that actually knew what the heck they were doing.

I, like so many spoonies, have countless other ridiculous stories I could tell, but yesterday’s one-word prompt was “privacy” and I immediately thought of the time my high school violated mine.

via Daily Prompt: Privacy

It’s the Little Victories

I was thinking about how I washed the dishes twice this week and immediately decided I wanted to share this victory, however small it may seem to the healthy, with all of you! Some of you are new here- Heck, I’m new here, so I’ll provide you with a little background…

My name is Danielle, I’m twenty years old, and I’ve been diagnosed with various chronic illnesses that confine me to my bed more often than not. (I am not kidding when I say there is a permanent imprint where my butt typically rests on my mattress.) One of those illnesses is Postural Orthostatic Tachycardia Syndrome (POTS), a dysfunction of the whole autonomic nervous system. That means everything you don’t think about that your body makes happen, so anything from blinking to the way your heart works.

Because of my autonomic nervous system behaving like a preteen in their rebellious phase, when I stand for more than a minute, my blood pools at my feet instead of pumping back up to the rest of my body like a normal human being. My heart then tries to overcompensate by pumping harder and my brain doesn’t have enough blood circulating back to it. Because of all of that, I feel a lovely buffet of symptoms, such as lightheadedness, dizziness, fatigue, brain fog, blurry vision, nausea, muscle weakness, etc., etc. Keep in mind, if I was already feeling those symptoms, they definitely got worse with the blood pooling. I’m just lucky I don’t full on faint like so many others with POTS. I simply feel like I’m going to.

Of course, I have other illnesses that also complicate things. Early onset arthritis, Ehlers-Danlos Syndrome Type III (EDS), and Chronic Fatigue Syndrome (CFS), but POTS has always been the main reason I don’t wash the dishes because it requires standing for a while and standing with POTS is dangerous. “So why don’t you get a stool?” I will eventually, but the point is that I do not have access to one high enough at this point in time.

With all of this in mind, and the fact that I already felt like shit, I washed the dishes. Why? Because A. they were piling up and B. I wanted to feel useful for once in my adult life. Normal twenty-year-olds are in college or working and, seeing as how I can’t do either of those things, washing dishes was something I could do. Well, sort of. So I cranked some tunes and danced as much as I could while scrubbing eating utensils and placing them to dry on a rack. Dancing actually helped my blood move around, I think, because when I was finished my feet were not as purple as they should’ve been. “Why didn’t you wear your compression socks, Danielle?” You’re not my mom!

It’s important to note that while I did wash dishes two days in a row successfully, I had to immediately go lay down and guzzle as much water as gastroparesis would let me (which wasn’t much). I also took one of those chewable SaltStick tabs and promised myself I would not do anything but watch Netflix for the rest of the night. (I also broke a glass because my arms and hands were tired, weak, and achy, but ssshhh.)

Three or four days later, I am still stuck in bed, feeling the side effects of doing a simple household chore. I don’t think I regret it, though. I did something I haven’t been able to do for 6+ months… It’s the little victories.

51 Songs to Help You Fall Asleep

My sleep schedule at the moment is completely backwards. I woke up at around five in the evening and, as I’m typing this, it’s 8:30 A.M. I’m barely even tired! With insomnia and sleep apnea, there’s not much I can do about my awful sleep schedule considering I’m out of my medication. To help, I made a sort of “wind down” playlist on Spotify. It’s not just for helping me get to sleep, though. It helps when random tachycardia from POTS hits, or if I’m just stressed out and need something relaxing to focus on. You can find the whole playlist here, but I’ll list some of my favourites below!

American Man – Rio Bravo
April – Imaginary Future
Breathe (2 AM) – Anna Nalick
Bright – Echosmith
Brown Eyed Girl – Van Morrison
Budapest – George Ezra
Burn the Night Away – There For Tomorrow
Careless Whisper – George Michael
Chocolate – Jackson Harris
Clair De Lune – Claude Debussy
Come Away With Me – Norah Jones
Come to Me – The Goo Goo Dolls
Daedelus – Bryarly
(Don’t Fear) The Reaper – Blue Öyster Cult
Dream a Little Dream of Me – Mama Cass
Falling Over Me – Demi Lovato
Follow Your Arrow – Kacey Musgraves
Hate to See Your Heart Break – Paramore
I Swear This Time I Mean It – Mayday Parade
I Want to Break Free – Queen
I Won’t Tell a Soul – Charlie Puth
Intertwined – Dodie
It’s Getting Better – Imaginary Future
Jenny’s Song – We the Kings
Just Keep Breathing – We the Kings
Kiss Me – Sixpense None the Richer
La Lune – Billie Marten
Last Night – Motion City Soundtrack
Last Song – Alexis Ffrench
Let it Go – James Bay
Losing My Mind – Charlie Puth
Love in a Box – The Workday Release
Love is Beginning – Imaginary Future
Maybe Tomorrow – Stereophonics
Mechanical Heart – Jon D
An Old Peasant Like Me – Explosions in the Sky, David Wingo
One Last Dance – Us the Duo
Please Don’t Say You Love Me – Gabrielle Aplin
Roses – Carly Rae Jepsen
Runaway – We the Kings
Soffia La Notte – Night Breaths – Fabrizio Paterlini
Somebody Else – The 1975
A Starlit Sky – The Workday Release
Stay Alive – José González
Stay Awake – Julie Andrews
Still – Daughter
Stop This Train – John Mayer
Sweet Disposition – The Temper Trap
The Whispering Caves – Those Who Rode With Giants
With a Little Help From My Friends – The Beatles
You’re So Very Far Away – Clem Leek

Happy Birthday, Bothi

My grandpa died not long after I got sick. He was battling medical problems of his own, far worse than mine. I was twelve at the time, maybe even thirteen, and, because I was so young, it’s getting harder and harder to remember him.

I don’t want to forget. I don’t want to forget the sound of his voice, or his favourite TV show (Star Trek), or the memory I have of simply watching him from the rocking chair after school while he sat at the desk in the computer room. I don’t want to forget him cursing at people who stole our parking spots, or holding his hand while we walked around the flea market, or relaying messages with my brother from our set up at antique shows to his appraisal table. I don’t even want to forget him shushing us at dinner when there was something on the news he wanted to see.

I don’t want to forget.

I remember the night he died. My parents and I were in our favourite local restaurant that has since closed down. This restaurant only played one CD, over and over. Seriously, I think I’ll have Mambo Italiano (by Rosemary Clooney, not Dean Martin) and That’s Amore (this one is sung by Dean Martin) stuck in my head for the rest of my life. Anyway, we were sitting at dinner, listening to the CD, laughing about something… I don’t remember what. My dad and I had just ordered our favourite chocolate cake for dessert (Mom insisted she didn’t want anything, but we both knew she was going to take bites out of ours) and our leftovers were coming out. Or maybe they were already in containers on the table?

Then mom got a call. I had a bad feeling in the pit of my stomach before she even answered. Bothi, my grandpa, had been in the hospital for a while at that point, and despite my family’s efforts to shield me from it, I knew deep down this was it.

I remember Mom rushing out to the car. Dad and I stayed behind to take care of the food and the bill. It hadn’t hit me yet. Honestly, I think I was in shock, running on autopilot. We went home, I emptied the tote bag I used for school, and filled it with things I thought we might need: a box of tissues, my pink iPod Nano, earbuds, and some other stuff I can’t recall. Then we got in the car and drove the hour it took to get to the hospital. Slowly, it started to hit me, but I was still kind of in shock. I remember texting my friend for comfort and listening to sad songs with my iPod because for some reason I thought they would make me feel better. My friend helped me realize how horrible a plan that was, and so I switched to something else until we got to the hospital.

The rest of the night was a blur, except for the reality of it all finally hitting me when we got home. My brother heard me crying because we share a wall, so he told my mom, but whether or not I unlocked my bedroom door for her will have to remain a mystery because I can’t remember anything after that. Well, until the funeral, and then spending time with my grandma while family and friends of family came around with enough food to feed armies. Why is it that when someone dies, our automatic response is to give food?

I suppose I could say something about how the dead are never really dead. That they live on in our hearts and our memories. Though all of that is true, it’s not the purpose of this post. The purpose of this post is to remember. I have enough trouble recalling parts of my childhood with this foggy brain of mine.

I’m determined to remember sneaking him food he wasn’t supposed to be eating while Grandma wasn’t paying attention. I’m determined to remember being picked up from the bus stop on his motorized scooter, where he let Greg and I work the horn. I’m determined to remember the ink on his hands from refilling the cartridges in the printer, and the way he sometimes reeked of perfume and cologne because of their eBay shop. I want to remember the green shirt he wore often, the tattoo on his arm, and that if I forgot to say goodbye before going home, he’d make me hug him longer the next day.

Bothi’s birthday was January fifth, something I didn’t realize until the eighth, three days later. It upset me that I missed his birthday, but most importantly I missed him. I wanted to post this for two reasons. One, I write when I’m upset. Two, it recently occurred to me that I don’t talk about Bothi much outside of my family, and I don’t think that’s right, so I decided to hit publish instead of keeping it to myself, as I’ve done for far too long.

Dear Diary #1

(Inspired by: You (Almost) Never Have Nothing to Write About: 4.5 Steps to Busting Bloggers’ Block by Michelle W.)

I have nothing to say. Okay, that’s not true. I’m sure there’s something rattling around in there (“there” being my brain), but, as of right now…nada. Zip. Zilch. This never used to happen to me. Up until a couple of years ago, I was overflowing with ideas to write about; stories to tell. After, what? fifteen years? of writing, it’s like I’m all tapped out.

I’m not sure where to go from here. I still love writing. I still have a passion for it. Yet, I’ve got nothing. Well, that’s not true. I’ve got whatever [waves hand at my screen’s general direction] this is turning into. Though I’m struggling to figure out how to even talk about having nothing to talk about. So, let’s not do that. Let’s talk about something else…

I’ve been watching the TV show Lucifer for the past couple of days. I’d started watching it around the time it came out (2015, I want to say?), but then I started something else, no doubt, and forgot about it until now. Being bedbound, I am well-versed in all things fictional: TV shows, movies, video games, books… Actually, scratch the last one because I’ve let my love for reading slip the past few years. I am trying to change that, starting off slow, by setting my Goodreads Reading Challenge to ten books by the end of 2017. It may not sound like much, but then that’s the point, isn’t it? Gotta start somewhere. Especially since I only read five books total in 2016.

Anyway, my point was that I’m almost always in the middle of a series. Last week it was Hawaii Five-O on CBS (I’m not done with that, so no spoilers, please). The week before that, it was… Actually, I think I was re-watching When Calls the Heart on the Hallmark Channel. I’ve been thinking about dedicating part of this blog to whatever series I’m currently reading/watching. Maybe somewhere in the About page that I still haven’t begun typing up. It won’t be anything big. Just a line, saying something like “Currently Reading: Graceling by Kristin Cashore”.

It turns out I had something to say.

I might make this a thing on my blog, for when I’m not sure what else to write. I’ll call it “Untitled”. Sure, I talked about absolutely nothing of importance, but it got me writing! It was actually more fun than I previously anticipated, so I’m not complaining. What do you think?

EDIT: I’ve decided on “Dear Diary” instead.