On tech-driven exercise and life with a disability

Move, whether you want to or not. (Photo by Ryan De Hamer on Unsplash)

Mabuhay, and welcome to Very Online, issue #4!

Also… How is it February already? And 2022?? Really??? What the fuck is this???????????

Here’s another way to think about this rapid passage of time. Macaulay Culkin is a dad now. We have already passed the ‘future’ depicted in the original Blade Runner. And we are two months into the year of Soylent Green. Think about that for a few minutes, and please accept my sincere apologies for making three different movie references in the span of maybe 10 seconds.

You still here? You cool? Cool.

Heavy stuff

I have never been a poster girl for healthy living. In fact, I was stupidly proud of being the exact opposite of that. And that’s despite having hypertension and heart problems at an early age, a seesawing weight from several cycles of dieting + working out + binging, and heavy cigarette smoking and alcohol consumption for around 20 years.

Oh, to be young and healthy and clueless again…

Um, no. (Also, here’s a TV reference: “The White Lotus”.)

Like everyone else, my life has been upended in multiple ways by COVID-19. But unlike many of my friends, who simply set up home offices and gyms and managed to make seamless transitions, I failed spectacularly. So I took a long mental-health break and just let myself go.

It’s safe to say that I’m now at my heaviest and most unhealthy. To be honest, I’m surprised I’m still here. (I did quit smoking though – and did it cold turkey! One win for me.) So I made a few vital life changes back in December 2021. These changes aren’t just about improving my quality of life or making a bucket list (movie reference #4!) for, uh, kicks. I must do these to stay alive.

First on that list was simply moving. The most insidious thing about having a sedentary lifestyle + >10 years of working from home/remotely is it’s pretty difficult to break long stretches of physical inactivity, especially if you’re in the thick of work or already spent mentally. I know the very last thing I want to do after a long day of tasks and deadlines, office politics and gaslighting, and multiple responsibilities at home is to do anything physical. I’d much rather crawl into bed and spend the rest of the night binge-watching or reading or on group chats with my friends, whisky glass in one hand and maybe a sandwich or pizza slice or fistfuls of popcorn in the other.

But I also feel like shit being this unfit, and I am tired of feeling like shit and being unfit. So… Time to move, Self.

The big hurdle

For most people, exercising would be as simple as picking a sport or starting a gym routine, or resuming their old ones from the pre-COVID years. I can’t do that. Not only am I unhealthy, but I am also, in technical terms, disabled.

Back in August 2020, I was diagnosed with a nasty and unpredictable hearing/balance disorder named Superior Semicircular Canal Dehiscence (SSCD; sometimes called Semicircular Canal Dehiscence Syndrome or SCDS). In my case, I have a hole in the right temporal bone of my inner ear, which severely impacts my balance and hearing, and limits my physical movements and positions.

Think of it as your inner gyroscope going haywire the second you move the ‘wrong’ way – and feeling like Hulk is spinning and throwing you around like Loki in The Avengers:

Here’s exactly how limiting it can be. I can’t do standard cardio routines, weight-lifting, or cross-training anymore. I can’t lie on my back and right side, fully bend over and touch my feet, fully bend backward and look up, or completely tilt my head in a certain way and direction for a long time. All my movements must be controlled and deliberate to maintain my equilibrium. If I lose that equilibrium – say, by doing the movements I just mentioned – I would experience vertigo and vomiting and nausea that can last anywhere from hours to days to, as I found out last month, an entire goddamn week.

The ‘best’ part? Those limits can change at any time. So I could go months without triggering an SSCD attack; then have one that can seriously disrupt my life, and takes time to recover from and learn a new set of physical boundaries.

As for cures, SSCD can only be fixed by invasive surgery (either via middle cranial fossa or transmastoid approach). That’s assuming we actually have doctors in the Philippines who do MCF and transmastoid surgery; I am still looking for a qualified local surgeon with a good track record. (Read: their patients are still alive and back to normal.)

TL;DR: SSCD drastically impacts hearing and balance and is, therefore, an invisible disability. I am a Person with Disability (PWD) now, and I can apply for government IDs and legal benefits for it. And if you think I am not disabled because I don’t have a visible devastating and permanent physical injury on me… Unfriend me, you disgusting ableist.

The tech-reliant plan

Basically, SSCD scratches off all workout options except one: walking. And sometimes, even walking won’t be possible sometimes if the air and fluid sloshing around my inner ear aren’t in the mood to play nice and/or keep me barely upright and functional.

So I had to make new rules for myself:

  1. Exercise only when I can, and only for as long as I am able to. The moment I feel SSCD symptoms or physical pain, I have to stop.

  2. Do not feel guilty about stopping for a day or several.

  3. It’s better to do something than nothing at all. It’s OK to miss those distance and step goals!

  4. This will take a long time. I am expecting to expend years’ worth of effort instead of months. And again, that’s OK.

And because of my current limitations and COVID outbreaks and restrictions, getting active again would mean increasing my reliance on technology and adapting to a few digital alternatives. We have long talked about going digital for dating, sex toys, and all things carnal, so it should be the same for fitness too, right?

In this case, I was helped along by a digital trifecta: blogs, YouTube, and e-commerce. I read my tech-blogger friends’ recommendations on the latest (affordable) fitness gear, watched YouTube overviews and reviews, and went on Lazada (La-za-DAAAAH!) and did the whole Add to Cart routine for the following:

For workout clothes and shoes, I ordered what I needed from Decathlon Philippines. They have plus-size gear at great prices, which was a pleasant surprise. Thank goodness plus-size shopping has improved over the past few years!

And for metrics, I use the Huawei Health app to extract the data recorded on my smartwatch and scale. Pro tip: use the QR code on the Huawei product box, and don’t download the official app on the Apple and Android app store! You’re welcome.

The results

No thanks to recurring SSCD attacks and various other illnesses, I haven’t been as consistent with my low-impact exercise as I want to be. And I haven’t lost weight yet, in case you’re wondering.

But I’ve seen a few other positive outcomes after two months.

First, I didn’t know how much I missed being physically active and strong. I was a bit sporty when I was a kid: I did track and field in elementary and high school, and enjoyed ice skating/hockey and futsal in college. It felt really nice for my body to respond the way it used to and in the ways I wanted it to, even if I was just walking on a treadmill.

Apparently, my body can still be cooperative sometimes. And it was awesome to feel strong again: to know I could move despite pain and fatigue and everything else, and that I have strong days alongside my ‘weak’ ones.

Second, I had a sense of accomplishment whenever I raised the bar for myself. Adding five minutes here and there, increasing the speed a half-level at a time, and adjusting my posture and cadence and pace can work wonders. These days, I can do up to five kilometers an hour. Not bad, huh?

(My Huawei Health app also says that since I started, I have shed about “28.5 chicken drumsticks” worth of calories. Tarantado ‘to, ah. Leave my beloved chicken drumsticks out of this.)

Third, unlike my last sustained effort at fitness (which was around 2010-2011), this time I had other metrics aside from weight, BMI, and a gym trainer’s arbitrary input. I can now use distance, the number of heartbeats per minute, step counts, and workout intensity measurements as well. If I wanted to gamify my workouts, I could join contests and set workout goals through my health app. And if I wanted all the numbers my fitness tracker and app can get, I can check out my sleep patterns, and stress and oxygen-saturation levels; or even do its pre-programmed breathing exercises and workout routines!

But that’s also the tricky thing about fitness trackers: we can get too fixated on what they record, then too discouraged if we don’t meet preset goals.

The Washington Post asks: “Is it time to stop using your fitness tracker?”

It’s a good read. Check it out. 👍️

I recognized many of the statements made by the respondents in the article above because I made them in my head, too. When I first got my fitness tracker, I obsessed over every statistic and felt pangs of guilt whenever it reminded me of proper sleeping hours and expected workout intensities. Yep, that little shit on my wrist can be as condescending as I am sometimes.

But I snapped out of it after a few weeks. I guess it helped that I knew from the very beginning that I was playing a long game; and that my disability, weight, clothing size, and BMI are completely separate from my self-worth. I still keep tabs on the numbers; but I base my decisions on how I feel at that moment, not on the numerical goals I set.

So my fourth result may be the best one so far: heightened personal awareness and self-compassion. I am returning to exercise as a disabled person, but I still slip back sometimes into the expectations and self-talk I had as a non-disabled person.

I have to be kind to myself today and every day, and that is non-negotiable. Instead of insisting “I used to be able to do this, so I should do it again now” and “It should be done this way because that’s how I used to do it at the gym,” or degrading statements like “Kaya ko naman eh, tinatamad lang ako,” I try to go the other way. It’s tough, especially when I see friends’ workout videos and results everywhere on socials and I know I can’t do that or keep up.

What I didn’t expect

There was one thing I didn’t account for: anger. I expected jealousy, to some degree. Anger came out instead.

Last we all checked, we live in a democracy and we can post whatever we want online as long as it’s not libelous, illegal, harmful, abusive, and everything else you can find in a standard Terms of Service contract. I don’t mind seeing friends embark on their own fitness routines at home and share the results they worked hard for. They should be proud of themselves, and I am proud of them too.

But when some say it’s all due to hard work – and fail to consider that their being privileged and non-disabled are important factors as well – that’s when I get that strong urge to throw hands. We don’t have it as easy as you do, sweetie. “Look at the bright side” my gorgeous fat and disabled ass.

Sometimes, I even hope they get just an ounce of what I am dealing with and see what it’s like, or they just run out of air in their little bubble of ignorance. But anger takes up too much of my time and energy, and it’s easier to let it go in most cases. Just not worth it, you know?

Hey, I’m human like you. I am allowed to be angry, too.

On that note… Maybe I need a punching bag, too?

Heyyy 👋

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