It Wasn’t Supposed To Be This Way.

It’s about 2 months past my birthday, and I feel like much of the progress I had made in the handful of months preceding that milestone has slowly become undone.

2018 had ended so well. I got treated for small intestinal bacterial overgrowth (SIBO) for the umpteenth time—but the medication combination this time around actually seemed to do the trick. A two year relapse was halted with a Rifaximin, Fluconazole, and Interfase, and I was over the moon to realize that remnants of my old functional self were coming back.

Was SIBO really the primary issue all along? I still don’t know; but it didn’t matter to me once symptom remission started. All I knew was that I had so much “lost time” I felt suddenly capable of making up, and I rolled up my sleeves and got down to business. Of note, I got what was (/is?) a dream job opportunity in marketing and communications. And now, given my relapse, I’m in the heartbreaking position of feeling like I’m becoming incapable of doing my work, despite how much I’m trying to keep my cognitive functioning intact.

Objectively speaking, I know there’s a lot of past trauma bubbling to the surface here. I’m still functioning significantly above my lowest point (though it feels just as bad, as there’s a sense of being more at stake (age and livelihood/occupation)). But I know what’s happened in the past, and I know the crushing pattern that typically ensues.

haze, sky, clouds, sunrise

Since 2014, my world’s been turned topsy turvy, with little consistency to hang on to for comfort. The cognitive dysfunction that seemed precipitated by tickborne illness in fall 2014 mysteriously entered a remission period 8 months later.

Then there was the fall 2015 relapse.

Then the summer 2016 remission.

Then the fall 2016 relapse, lasting up until November 2018.

WTF, body?! On one hand it’s been a blessing to recently experience again what it’s like to feel some variation of “normal”, but on the other hand it shatters your soul when that feeling gets stripped away. And it gets shattered even more when you realize that you have no certainty in yourself to rely on.

Even in this downward swing, day-to-day variation fluctuates from, say, 50-70% of my normal—seemingly independent of how well (or not) I take care of myself. There’s a deep-rooted sense of despair that becomes hard to shake when your cognitive function seems completely out of your control. The difference between a 50% day and a 70% day can be the difference between scraping by head down at work or being capable enough of commanding a meeting; perhaps most frustrating of all, it’s hard to tell which it’ll be until you’re right in the moment, on stage to perform.

So that’s where things are at. I’m emotionally drained and I fear this is just the beginning; but I’m trying my best not to let this become a self-fulfilling prophecy. What’s promising this time around is that I have something concrete to chase: SIBO.

Here’s hoping that getting in early for lactulose hydrogen breath testing (the major test for SIBO)—and having a gastroenterologist willing to see me—will yield a quicker and more long-lasting remission than last time. And that there’s nothing else unknown that’s obscuring the picture.

I’ve had blogging in the back of my mind for months now, and it’s felt good to just jump right in and knock out a post. No promises, but it’s certainly my intent to get back to write consistently and sharing more details of my medical journey! Who knows—if you leave a comment, maybe I’ll be even more incentivized 😉

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