The Unexpected Fear of Getting Well

It’s terrifying to find a new purpose when your whole identity has been about managing chronic illness.

I hadn’t been sleeping well for about a week.

Wide awake until 2am, then up for work at 6, full speed ahead non-stop.

But it’s strange, I wasn’t tired during the day. At all.

For someone who had to sleep 23 hours a day for a few years from chronic illness, this is uncharted territory. Not even a nap was needed.

There’s an interesting phenomenon that can happen when you go strict carnivore diet — loss of sleep.

I’d gone through it before, but here we were revisiting it.

Even if my post-explant recovery diet plan looked like cheeseburgers and donuts for a while, I’d finally buckled down and let go of the baked goods long enough to trigger that phenomenon again.

When you eat large amounts of protein, certain amino acids compete with Tryptophan getting shuttled into the cells. Eating carbohydrates can clear those pathways again.

So I conscientiously made the decision to carb-cycle yesterday around noon.

Within an hour I was passed out hard on the couch. Vivid dreams included.

A small amount of carbs before bed again, and I slept through like a baby. Down for the count by 10pm, a new new record.

It’s worth learning the nuanced things outside of mainstream.

What’s my greatest takeaway from decades of chronic illness? You have to be your own advocate, and expert. You have to invest the time and energy to read, research, study, and experiment. Write it all down, try it again, memorize what does and doesn’t work.

According to every medical doctor I was the healthiest patient they’d ever seen. Even though my symptom list was a mile long:

• POTS (eli5 = fainting when standing up too quickly)

• severe low blood pressure

• chronic dehydration

• near-complete short term memory loss

• chronic fatigue

• muscle wasting

• rapid weight gain, then loss

• blood sugar issues (high and low episodes, unrelated to meals)

• eye pressure and episodes of severe blurred vision

• severe food intolerances, including histamines, oxalates, sulfur/thiols

• hormone imbalance, including low testosterone and amenorrhea

I’m sure there are other things I’ve been blessed enough to forget about.

Getting better is a weird pill to swallow.

Before my explant surgery I watched a short documentary about a woman who’d overcome life-threatening cancer. She’d been at deaths doorstep, and lived in a ward of the hospital where the people she’d befriended had died of the same.

She was cured, and went home to continue on with her life. And she expressed this deep desire to go back to the hospital, to be sick and die.

It made me cry because I understood exactly how she felt.

My whole life had become about managing being sick. That had become my purpose, my whole identity. 24 hours a day, it was my obsession to problem solve every new thing; it had to be to survive.

And here I was, facing the opportunity to find hope at recovering something after surgery. To possibly know a different way of life, and it was terrifying.

Who would I wake up to be? If I’m no longer this person, who do I become?

I wasn’t afraid of waking up from surgery and being just as sick, or sicker, for the rest of my life. I already knew how to mentally cope with that, I’d sat myself down for many pep talks saying, “this very moment right now, as doggedly sick as you are, is the best you’re ever going to feel for the rest of your life. It’s only going to get worse each day after this and you have to be okay with that.”

And I was.

It’s amazing what your brain can come to terms with.

I woke up this morning and went for a run. Never in my life did I believe I would ever do such a thing again.

And I didn’t just run. I had Dora slung over my shoulder and we ran up a hiking trail, nonstop. We never ran out of breath or had muscles cramp up or feel our heart beat out of our chest.

What an incredible blessing.

It’s worth figuring things out, it’s worth hanging in there for the risk of a new lifeline.