Fighting to Stay Awake

For as long as I can remember, at least back to 2018 when all the “fun” started, one thing I’ve constantly battled with is sheer exhaustion and fatigue. Yes, my batshit immune system does a solid job wearing me down hourly, however, since I’ve gotten the Apple Watch a few years back, there’s 1 common thing, and it’s getting yelled at for not sleeping enough.

Specifically 8 months ago, the new software started monitoring for Sleep Apnea, barely even took 3 days and I’d wake up to the Sleep Apnea warnings on my wrist. Anyone who’s had a crappy nights sleep understands how the next day goes. Drinking lots of caffeine, walking, and getting the “warm” feeling at my desk. As time has gone on, it’s gotten much worse.

Every morning I wake up, besides the face pain, is getting hit by the “you didn’t sleep enough” nagging my watch tells me. But what’s been an eye opener, was since 2020, I’ve had the O2 sensor of the watch on my wrist, before we moved out of the mold infested nightmare, every night, I would average anywhere from 72%-76% O2 at night. When we moved out, it did come up a little, but now I wake up at least 6-9 times a night. The minute I wake up the worst as I’m somewhat gasping for air.

If I sit up, or move around, my O2 goes up to 93%. There’s been several nights where Aggie has woken me up on the side of the bed where I am actually sleeping while sitting up at the edge of the bed. The nights where ketamine, Sajazir, or Dupixent gets used helps tremendously.

Lately, on average, I get “maybe” 1 7 hour sleep night where I score super high anywhere from 95-100. The next morning I feel somewhat ok. But that doesn’t last long. By the time I get to work, I’ve already had 3-4 cups of coffee, and before I make my way to the desk, I religiously pick up Starbucks. On a side note, I did end up switching my coffee order around to just a normal latte quad shot with 4 stevia and oat milk. It’s been my new go-to since the non-stop onslaught of kidney stones I keep making.

The CT last week shows my spine is wearing out, most likely due to age. The other thing, was my liver enzymes the past 2 lab draws have been somewhat high for my infusions, on top of that, where the liver sits (right side of your abdomen) really hurts. Either during digestion, or just tapping on it is just not great. The other concern, is my WBC hasn’t gone down in over 4 years. It’s hovering around 14-17, which isn’t good.

The CT scan revealed that my liver is showing signs of Fatty Liver Disease. Which is odd, since I haven’t drank in quite some time. But this got my research skills fired up.

My sleep has just been a rollercoaster, definitely having problems while I sleep. On average per night, 6-9 times I have to get up. Whether if it’s just to sit on the edge of the bed, or hit up the bathroom again and again. Which is a symptom called nocturia. Looking into my watch data further

You can easily see I hit the danger zone way more than I should be, which looking at my O2 over the same range

This explains why by 11 every day, I feel like I ran a full marathon. Physically fatigued. Exhausted. No matter how much getting up, moving around, and caffeine I drink will do anything to help. Once lunch happens, I spend the rest of the day fighting myself to stay awake.

A few weeks ago, Aggie brought home one of the sleep study rings, the data it collected is way more concise, however, it definitely caught some serious sleep apnea.

During the study, my O2 hit below 80%, and the ring alarmed to wake me up to get my levels back up.

I met with my GP last week, and was diagnosed with Obstructive Sleep Apnea. He did end up ordering my CPAP machine to help me breathe while I sleep, but the other thing, is a prescription of Modafinil to keep me awake during the day. Last Friday I didn’t sleep great, however I could definitely tell a difference with the modafanil. Usually by 12, I’m dozing off, but I stayed awake, and alert until about 7pm. And when it wears off, oof. It wears off. Immediately exhausted and ready for bed.

I’m hoping that this gives my immune system some much needed rest so it can calm down. I have had at least 2 Angioedema attacks last week, both immediately targeting my face and throat. It starts of with a tingling sensation, which transitions to painful tingling, then the swelling starts.

Hopefully my CPAP comes soon, I need some decent uninterrupted sleep. My entire body is definitely feeling the effects of essentially no sleep. Here’s hoping insurance won’t play there games that they normally play. I did look at a few of the machines, and jeez, some of these are around $1000.