I've tried to write this blog so many times in the past six months. I failed repeatedly because the writing wasn't "good enough." Inevitably, I'd become too exhausted from trying to edit it to my usual standards and delete the entire thing. So here's my what-I-can-manage-today version.
I want to share this post because:
I have postural orthostatic tachycardia syndrome (POTS). This is an autonomic disorder which basically means one of the automatic functions of my body (e.g. breathing, digestion, heart beating) is not working as intended. In my specific case, my circulatory system doesn't adapt to gravity.
What does that actually mean? When I'm lying down, I'm fine. When I sit up or stand, my circulatory system doesn't properly compensate for gravity so my heart has to work extremely hard to keep blood pumping. On really good days, my heart rate only has to work 40% harder when I stand; on bad days it has to work harder by 200%. (For those who care/understand heart rate numbers, an average person's heart increase by 0-10 beats per minute when they stand; mine increases from 30-80 beats per minute when I stand).
In practical terms, the mere act of standing puts me in the target heart rate for moderate to extreme exercise. So functionally, there are days where walking stresses my heart out as much someone else's HIIT workout.
As it turns out, your circulatory system is connected to well...your entire body. It affects digestion, brain functioning, breathing, movement...all of it. So the symptoms can be all encompassing as well.
POTS symptoms vary some between people. For me, my usual symptoms include physical weakness, dizziness, fainting, extreme nausea, chest pain, brain fog/difficulty concentrating, impaired memory, difficulty breathing, and fatigue.
The symptom list means more when I look at its practical impact:
When I start listing things out it sounds kind of...serious?
And that's my other big struggle: denial.
Denial is a major problem due to my tendency to cope with adversity by "powering through" and because I first started having some of these symptoms years ago--but doctors told me I was fine and they couldn't find anything wrong. If five doctors, including a cardiologist, tell you nothing is wrong after you collapse while working in the ER, you learn to think, "Okay, nothing is wrong."
I fainted in the Target this spring and told no one because it was before I had a diagnosis and this was "just that thing that happens sometimes."
When I reviewed this history with my current doctor (as the symptoms worsened significantly this winter), his jaw literally dropped, his eyes widened, and he exclaimed, "This isn't okay!!"
Turns out I have a better doctor now than before.
This is good, because I'm still really good at denial. Despite months of positive tests for POTS and adjusting to the idea of it, I recently convinved myself I probably didn't have it. Why? Because my wrist heart rate monitor was wrong one day, so I told myself it had probably been wrong all of those other days. (Sure, the doctor's office heart rate monitor also tested me positive for POTS, but maybe that was just a weird fluke.)
My doctor recently gave me a medical-grade heart rate monitor to test myself throughout the day "to remind yourself you really are sick," because my minimization of symptoms was so bad.
So now I take my own heart rate several times a day...and part of my brain still comes up with excuses for the tachycardic results.
This weekend, after aggressively following my treatment measures, I had a heart rate that was only 105. I convinced myself this meant the diagnosis might be wrong...when really, it means the treatment is probably right. (Also: 105? Still tachycardia. It just seems really minor when your heart rate was 148 just from standing earlier that day).
The combination of symptoms and my own tendency towards denial makes me terrible at predicting and planning for my actual level of functioning. It also means that overall, my ability to do things has been significantly reduced. So when I do have a good day or a good few hours, I look at the lack of time with friends, the neglected chores/errands, incomplete work at my day job, the lack of time spent outside/around nature, the lack of time working on game design, and half a dozen areas of my life, and I have to choose 1-2 to do during that good period.
Some weeks I've chosen game design. I like design work; it's fun and makes me feel like I'm accomplishing something.
Other weeks I've chosen to spend that precious energy on other areas of my life.
Until my health improves, choosing how to invest my resources feel like a simulator game on hard mode.
There is treatment for POTS. Some of it I can do now. It helps when I follow the treatment guidelines, but it requires building new habits and I'm still working on those.
Other treatment can't start until I see a specialist later this month. For example, physical rehab and medication are both primary treatments, but my primary doctor doesn't feel comfortable starting them without a cardiologist's input because my heart rate can get so high.
Once I am in full-treatment mode, based on average outcomes, it may take 6 months to several years to see significant improvement.
In the meantime, maintaining my day job is my first priority, since it comes with a paycheck, healthcare, and access to quality doctors. Also I find my job fulfilling/rewarding, and it's nice to have that positive anchor through all of this.
As bad as the symptoms get, the impact is amplified by the fact my day job is so intense. I average 12-14 hour work days with a few 16-hour days every month. So as serious as the symptoms might sound, I've only missed 4 days of work since February due to them, which makes me really fortunate compared to many people with POTS.
So what does that mean for Karma in the Dark, my other games, this website?
I'm done trying to predict. I will keep chipping away at these games, because it makes me happy, but that's about all I know.
If you want to learn more about POTS.
21 descriptions of POTS from other people who have it.