pieces of flare…

If it looks like a flare, and feels like a flare, is it actually a flare?

That’s the million dollar question I have found myself pondering for the last several weeks. I have been deep in the midst of a flare – or maybe it’s not a flare. Maybe it’s something else. I don’t know if we can ever be sure.

I have been grappling with some fairly significant fatigue for over 5 weeks. But before I get into that, it might help if I paint you a picture of where I was, in terms of baseline, before the fatigue started, for comparison. With the past 5 weeks excepted, I work out of the office about 35 hours per week. When I get home, I exercise for 30-45 minutes, every single day. Then husband and I cook dinner, clean up, and take the dog for a walk. On weeknights, after our walk I volunteer for a couple hours (shameless plug – I volunteer for the POTS podcast, thepotscast.com – check us out) or I study for a professional certification exam I’m planning on taking soon, or I search for a job for the husband. Then bed, wake up next morning, rinse, repeat.

I take a buttload of vitamins and minerals, but no prescription medication (except my new estrogen patch for my old dried up ovaries, but that’s it’s own sobstory). My exercise has progressed exponentially over the past couple of years, to the point where I can do a fairly intense bootcamp/crossfit style workout, I can’t climb a mountain, even one without steep trails, and I can’t walk more than a mile on a hot, sunny day. I can stand in a line for groceries or stamps or a beer, but couldn’t survive at a standing-room only concert without losing consciousness. But I can reliably show up for work and plans with friends and, by extension, my life.

In May, I started to notice that I was moving slower. Sleeping more. Skipping workouts. Everything takes more energy. I have been able to work, but due to the fatigue am back working from home so I can cut the 30 minute commute down to 30 seconds and spend more time in bed. I recline on the couch during my lunch break and often spend hours after work and on Sunday in bed. No exercise. No dog park. No studying for the exam. I have streamed more shows in bed in the past month than in the entire previous year (and am open to your tv show and movie recommendations. Preferably something lighthearted and with a little male nudity.)

After three weeks with no improvement, I made an appointment with my physician. We ran the standard labs, all of which came back normal, except that my protein levels are just barely low, which is routine for me. She also wants me to have a chest x-ray. I don’t think either of us expect anything unusual, as I don’t have any shortness of breath. But as I mentioned in a post several years ago, I have a growth on my left lung. We have to check it periodically to confirm it hasn’t suddenly started growing uncontrollably, and now seems like a good time to check.

My physician also asked if I’m under any stress. Of course I am, because there’s been a global pandemic for the past two years and because…well, fucking life, man. Husband has now been unemployed for over 9 months and isn’t eligible for unemployment. I can’t take sick days from work to rest because someone has to pay for the bills for the three of us (we take care of my father-in-law). Gas is $6.50 per gallon here, and inflation is almost 9%. Last month my dad fell, broke his hip, and had intracranial hemorrhaging. Fortunately he’s doing much better now, but yeah, I’m barely treading water in a pretty rocky sea.

But that’s nothing new. And before the fatigue started, I was managing that just fine with exercise and, if I’m being honest, sexy time and the occasional cocktail. When I’m not managing my stress well, I experience anxiety-like symptoms of tachycardia, racing thoughts, nervousness, and a feeling of impending doom. But I don’t have racing thoughts, and while I believe we’re all fucking doomed, I don’t think it’s impending.

So, no, I don’t think it’s just stress.

Then she asked if I’m sure it’s not just a POTS/neuropathy/histamine-related flare. Of course I’m not sure. How can we ever really be sure of anything, especially when dealing with complex matters of the heart? But for the first 4 weeks of this fatigue, all of my other POTS symptoms were stable. No increase in tachycardia, blood pressure swings, palpitations, dizziness, lightheadedness, blackouts….nothing. I am beginning to see an increase in palpitations and tachycardia, but that’s what a month without exercising does to me.

Generally when I experience a flare, it’s a sum of the parts, individual pieces bound together to create a whole flare. It’s fatigue and low blood pressure and nausea, sometimes vomiting, with dizziness. blackouts, or fainting. This is one symptom existing in a vacuum – fatigue. And, recently, some swollen lymph nodes. But in the absence of any other explanation, and in the exhaustion of all other options, we settle on “flare.”

And, except for the disruption to earning a regular paycheck, I don’t mind the occasional flare. It’s useful. Sometimes it helps to remember that for all of my exercise and social engagements and bravado, I’m still capable of having that stripped from my steady hands. Sometimes it’s good to be reminded of how little power I wield. And sometimes I need to be knocked back a few steps to appreciate how far I have really come.

So if it’s a flare, that’s okay. But I don’t think it is. And I have a theory, but am waiting on blood test results for confirmation. More on that next time.

Maybe, like you, I was one of those people who loves the world most when I’m rock-bottom in my fast car going nowhere. – Ocean Vuong

Smell ya later.
Linds