Quick note: This isn’t one of those posts where I end going on a long tirade that ends up saying “gotcha! jk I love the thing I claim to hate.” Those annoy me.
When I was diagnosed with POTS, a lot of people were sympathetic to the diagnosis and to the fact that with it, I was taking on a new banner and new identity. But for me, the worst part of it all was not necessarily the “chronic” or the uncertainty, but it was the treatment plan.
- Water, doable.
- Salt, doable.
- New meds, doable.
- Exercise? HOLD UP.
Intuitively, as a person with a brain that understands the basics of biology and the Health & Physical Education curriculum from Fairfax County Public Schools, I understand the essence of how exercise benefits the human body.
BUT, as someone whose primary symptoms are tachycardia, chronic pain, dizziness, and random unsolicited adrenaline surges, I’m not crazy about participating in the activity that wildly exacerbates ALL of those things.
I was dreading the entire exercise process: the blood, the sweat, the tears, the sweat, the more sweat because I can’t control my body temperature and because summer in the mid-Atlantic is a sick joke.
But my first cardiologist post-POTS diagnosis said the right words to get me started on exercise.
“It’s not gonna feel good.”
YOU HAVE MY FULL ATTENTION.
Because up until that point, doctors always painted the unrealistically happy portrait of exercise to me, someone who couldn’t achieve any of the goals they were suggesting. I’d list all of my symptoms and they’d come up with ridiculous suggestions that didn’t fit what I was capable of:
- “Why don’t you start up a jogging group with your friends?”
- “You should take a fitness class at the local rec center!”
- “Have you tried pilates? Do that and some cardio every day, I think you’d like it!”
And then here comes this new doctor, honest and realistic:
“There’s really no good treatment for POTS, and your body isn’t gonna like exercise, but it’s important and really the only thing we got.”
I started slow. He had me walking for five minutes a day every day for a week. At the end of the week, I increased my time by a minute. And I actually did it, because he was the first physician who didn’t bullshit me. He didn’t try to sell me on the magic of endorphins (which I’ve never felt, anyway); instead he just broke down exercise into something I could manage.
Over the last two years, I’ve started and stopped exercising a handful of times. Currently, I’m at 22 minutes on my recumbent bicycle, and oh my gosh I hate it, but at least there’s no expectations besides getting it done. It’s just me, my bike, and the DVR.
When I’m done, I climb the stairs from the rec room and drink water, panting and sweating, exhausted and weak. The closest thing to euphoria I feel is the alleviation of guilt. Now that I did my daily exercise, I don’t need to worry about that until tomorrow.
I know I’m not the only one who hates exercise and sees it purely as a necessary evil. But sometimes, in the supercharged world where the culture is shifting more towards “RUN A MARATHON BECAUSE IT’S THE WEEKEND!”, it feels a little lonely that working out is such a challenge for me. But then again, even if I was the healthiest person on the planet… I don’t think I’d be doing 5K’s or marathons. Because, in the words of Ann Perkins:
(Parks and Recreation/NBC)
In one of my all time favorite pieces of The Colbert Report, Stephen goes on a journey to sell his portrait for megabucks at a New York art gallery. He goes the whole nine yards—he has it appraised by several art appraisers, he learns all about the art scene from the art curator Simon de Pury, he shmoozes it up at the pre-auction cocktail party, and he crashes the actual auction.
The whole time, he’s happy as a clam (and a little tipsy at the cocktail party) and keeps sing-songing variations of “it’s happening!”
After it aired, I immediately adopted the entire series of phrases. I was soon greeting people by calling out, “is it happening?” or “there’s a happening happening!” every time I felt excited about something. This was occurring at a time when I was coming out of some darkness and finally seeing some light, relief. And it was my spring semester of my senior year of high school, things were very much happening. (Although they weren’t as spectacular as Stephen Colbert dancing to “Gin & Juice” with a Frenchman.)
Stephen & Simon de Pury jamming to Snoop Dog (The Colbert Report/Comedy Central)
Dysautonomia Awareness Month kicked ass all because of volunteers. (Pardon my French.)
Times Square under an assault of Dysautonomia Awareness (Dysautonomia International)
I burst into tears the day I saw that Nasdaq billboard in Times Square was lit up turquoise with the word dysautonomia plastered all over it.
Two years ago, I’d never heard of dysautonomia. My mom and I had trouble pronouncing it—her proclivity for other languages and their rules had her falling over syllables. And I couldn’t keep track of what letters went where. But we got it right pretty quickly.
Two years ago, as we were learning what this disorder was, we were also explaining it to my doctors. We were shopping for cardiologists who had also heard of it, who had heard of POTS. Some would say “no” and offer up a treatment plan, a treatment plan that was completely wrong for me.
Now? Things are different.
Today, I’m getting e-mails from my cousin at a conference for anesthesiology with pictures of poster presentations on POTS.
Today, my friend who works for a T-shirt design company is getting tons of custom orders for Dysautonomia Awareness shirts.
Today, my doctors are collaborating together on new projects. There’s a lot that they do know, and everything they don’t, they’re making plans together to figure out and to treat me in the process.
I recently got some potentially incredible news that my insurance company might be coming through for me on something big. I’m staying ridiculously cautious in my optimism, but this, like seeing the Nasdaq billboard lit up turquoise, was one of those “cry your eyes out, this is happening” moments.
I’ve been pretty fragile lately. My doctors have been wonderful, reminding me that expectations change when circumstances change. I felt like I wasn’t achieving anything and like I was cutting myself too much slack. I should just push harder, that’ll fix it, right? I wanted results, I wanted to see something happen.
But there are some times when pushing won’t fix it. There are some times when you have to pull back a little bit. A lot of people believe that you have to keep goinggoinggoing all the time to treat dysautonomia, but on the advice of my doctors, I’m pulling back just a little bit. I’m just going to keep going at a slower speed and see if I can make things happen that way.
So I’m working on being good to myself, and I’m working on those happenings.
And in the mean time, big things are happening for dysautonomia.
And that’s pretty freaking cool.
“Let’s make it happen!” (The Colbert Report/Comedy Central)
(Please, do yourself a favor and watch all three parts of Stephen’s quest to sell his portrait–it was for charity, after all: part one, part two, part three)
I’ve been on some type of daily medication since I was 10 years old. The medicines and dosages have changed over the years, at times I was only on one or two, now I have to take about 18 pills a day. (I’m considering buying stock in CVS just because my family is basically keeping it afloat.)
One of the hardest parts about medicine is going through any type of meds changes. Even if it ends up being the best medication combo of your life, if you have a sensitive body (like mine) the adjustment period can be terrible. The time it takes your body to get used to new levels, new chemicals, is agonizing. And when your body is already in crisis mode and you need to go through a quick, aggressive change, your body responds to the change equally aggressively.
I’m undergoing some adjustments with my mood stabilizers and I’m also starting Midodrine which I’ve learned anecdotally can be like a miracle drug for some POTS patients. I’m learning that it might not be my miracle drug, but it could still be helpful.
This is one of my more frustrating meds changes because I’m getting one of the commonly talked about side effects—a tingling sensation in your head—but way more prominent for me is the fact that I’m cold 80% of the time, I feel like I have to pee every hour, and I get nauseated super easily; all of which were side effects not advertised to me.
I was born to withstand cold. I was conditioned to Chicago and Minneapolis winters in the first five years of my life as well as my mom’s proclivity to keep the thermostat at or below 70 degrees. I thrive on cool temperatures. So when my body starts shivering and saying any chill is uncomfortable, I start to worry.
The first day of Midodrine, I was surprised that I could feel anything at all. I usually chalk up any feelings to a placebo effect—the mind is a very powerful thing—but the side effects have lingered.
Being cold is frustrating (and confusing), but it’s not intolerable. Hot flashes would be intolerable. I probably would’ve stopped taking Midodrine after 72 hours if it was hot flashes. The cold means I get to wear extra layers and burrow into blankets. It means I get to keep my favorite jackets on and wear fuzzy socks. (Leah just got me brand new fuzzy fox socks for my birthday that I can’t wait to rock.)
I’m still optimistic though, because a lot of side effects fade away after the initial meds changing period. After about two weeks, the harshest side effects disappear or at least calm down and in their place are the benefits of the medicine.
So I’ll stay bundled in my blankets, a little more nauseated than normal, and I’ll let you all know how the Midodrine works out. And if it doesn’t work out, we’ll try another.
I went to a spin class yesterday.
post workout bubble gum, zengo style
And for all of those who know me and my distaste for intensive exercise, I say to you, RIGHT?
I’m undergoing a bunch of meds changes and I went to a spin class.
And I’ll be feeling the effects for quite some time now.
But it was for several good reasons:
- I got to be surrounded good people
- it was a fundraiser for Dysautonomia International
- I now get to say “yeah, I’ve taken a spin class before”
My current exercise routine is pretty basic: six days a week, I get on my recumbent bicycle and cycle for a designated amount of time while watching late night television. And every week, I up the amount of time by a minute. Yesterday was the 20 minute mark.
The class itself was 45 minutes, so for the half I couldn’t exercise, I was hanging out on the bike, wiping my forehead with the towel, rehydrating, and watching in awe at everyone’s energy. I was also playing the “see if I can balance on this seat without holding on” game—I’m proud to say that I won this round and I don’t know if I should tempt fate ever again. The stakes were too high.
It was a great environment—tons of energy, tons of positive reinforcement, lots of “no one is judging you!” which is one of my favorite types of statements. Normally when I exercise I like to either be alone or I imagine myself in a Harry Potter invisibility cloak. As it turns out, a spin class with the music booming and the lights off offers the same kind of effect.
I never imagined that this type of thing would be possible for me. Again, I completely tailored it to work for me, but that’s really what life with dysautonomia is about—making the things around you work for you because your body can’t do that for you all the time. Mine was such a Spin Class Lite experience, (most everyone else did the real deal), but I STILL DID IT, and I’m still going to be feeling the burn with every step probably for a few more days. (And the burn is so real.)
Huge thanks to Elyse Schwartz for organizing the event (all huge thanks to her for being an all around superstar human being) and a huge thanks to everyone there for being kind and supportive. It’s a good rule of thumb that you’re bound to run into superior humans at dysautonomia events.
Birthdays are so tricky. They’re supposed to be the best day of the year—where people celebrate you for just being—and you hopefully get showered with gifts and cakes.
But unfortunately, that means it’s a day filled with expectations that everything has to go well. And with chronic illnesses in play, that’s hard to guarantee.
I finally had the “It’s My Party and I Can Cry If I Want To” Epiphany when I turned 20. I had a ton of great events on the docket—I got to see one of my best friends for lunch in Williamsburg on my to Virginia Beach with my family. Unfortunately, that day I was hit by mood swings which turned into anxiety and I kept panicking, “no! I can’t be sad on my birthday!”
I kept trying the “fake it ’til you make it” approach at having the Best Birthday Ever but once I started getting a tension headache, it got to be too much.
I spent that birthday morose and quiet, upset that I was losing to my body. I was supposed to be happy and perky, but instead I was busy fighting my own feelings and the throbbing in my head.
And then, I finally remembered that I’m the birthday princess, and I get to do whatever I want. I call the shots. This could finally be the year of the grumpy, quiet birthday—something I’d never tried before.
Honestly, it kind of sucked to give in to the mood swings for a while. It sucked to stop fighting to keep them at bay and let them take over for a while. But it saved me a lot of energy. Having bad feelings is exhausting, but battling them when they’re in army gear is so much worse.
Birthdays since the great epiphany have been better informed—for the emotional side, don’t fight your feelings, they’ll probably pass a least a little bit when you have your birthday cake/cookie/brownie/ice cream/whatever. But the physical symptoms are harder to self-talk away, but you can certainly treat them the same way. And on your birthday, no one can truly begrudge you some full-scale drama queen “woe is me! pain on my birthday!” because guess what, you earned it. If that’s your personality, if that’s your style, go for it.
My big day this year started off great—my present to myself was going to be a Treat Yo Self day: sleep in, no exercise, no school work. Mom also surprised me with treats from Mom’s Apple Pie Company. I went through my usual routine but started feeling symptomatic and that led to feeling some heartbreak. I got nervous that it would continue throughout the day—what if I didn’t feel well enough to go out to dinner with my family that night? Thankfully, there’s nothing like fear of feeling unwell to get you to chug water and get your salt.
I rested, got such nice messages from friends (and my mom’s 4 billion Facebook friends), and TWO CAKES!!! And aside from the several pictures my mom insisted we take at dinner, I didn’t force any inauthentic feelings. So yes, I felt bummed and symptomatic for a while. But it was my birthday and tons of people texted and wrote on my wall and liked my mom’s photos of me to tell me they loved me, so there was plenty of time to feel important, too.