Sleep Is Key

For probably the last year, I have no idea what that means. Since the pain began to intensify, my sleep went to absolute shit. And yes. That’s WITH Ambien.

Since the dalbavancin, I’ve been able to sleep the past 3 nights unbroken with 8+ hours of sleep. They say delirium starts when you don’t sleep. I think I was getting to that point.

Before the pain would just wake me up, hour by hour. I would move to the couch, and try to catch 2 more hours. As the day went on I would sleep between 9-1, but it’s not restful sleep at all. Same thing, broken. Waking up hour by hour.

I think I’ve finally gotten the formula correct with how to take pain meds with Ambien. For starters, Dilaudid amps you up, unlike morphine, Vicodin, Percocet, etc. It’s a much different opiate. But at the same time, Dilaudid slows you down, not physically, but mentally. For the past year since I’ve switched to Dilaudid, it would collide all the time with the Ambien.

If the timing was right, I could sleep at least 4 hours, which was enough. Or felt like it was enough anyway. But as time went on, and the pain ramped up from this infection ripping through my face, mornings I would wake up to pus sitting on my lip, my whole mouth is just on fire. Under my tongue is the worst. That’s where I feel the lumps. It’s like this sludge that won’t come out. I constantly try to milk it out of there, but it won’t budge.

The next thing I feel is the burning between my eyes and nose. It’s where the ethmoid sinus is. Only way to remedy that is to either do a sinus rinse, or hot shower and blow. Morning after morning this is the new normal. I can tell you from experience it’s probably the worst anyone could feel. And it’s not gradual, it’s what wakes you up.

The minute I wake up it’s like loony toons. When roadrunner and the coyote were doing their schtick of coyote sets a trap and backfires. Or when Elmer Fudd would go hunting for Bugs Bunny. Specifically it would more or less be like the hunting scenario most mornings. Where bugs would spin the barrel around and blam, right to the face. Within 1 minute, the full effect would hit, and I hope you’re still following along:

Pus on lip. Immense burning pain between my eyes. Cheeks and inside my mouth was just RAW. My left ear feeling like I got shanked with a screwdriver. My forehead feeling like I went face first through a brick wall. The swelling inside my mouth which felt like I swallowed a wasp nest. Lastly, my entire face is disfiguratively swollen, and it’s very noticeable.

Yesterday, was just wave after wave of thunderstorms. Each one making my left ear hurts more and more. We probably had at least 4 roll through. So I went out the front door to smoke. While I was out there, the new neighbor immediately noticed “Holy shit dude, your face”. I thought to myself great, what now? “You look human again”. I replied back you mean I don’t look like sloth from the Goonies!? Of course she didn’t understand the metaphor, but that’s what my face was slowly doing. It was becoming distorted.

I gave her the update as to what’s been going on. Showed her my sweet spoonie scar. At that point Uber Eats showed up, and I ate, and started the night routine of trying to get some sleep.

The formula of getting this to work correctly has been a challenge. As of the past 6 months, however, there was 1 thing that changed.

When everything started to spin out of control from a pain perspective, and no, it’s not because of “My dependence on optiates”, it was the infection raging in my ear, face, neck, and mouth. I approached pain management. I was pretty nervous to ask, but I’ve been very open with Dr. Mike. And he’s always been receptive to the feedback I give. What’s working, what’s not working. How I feel. Etc. He does an absolute fantastic job staying on top of his piece of this impossible puzzle.

We need to increase my dose, this isn’t working.

He immediately said, well there’s 3 things we could do (at this point I’m relieved), and he gave a few options. I settled on increasing the Dilaudid dose to 8mg every 6 hours. But what I didn’t know, was what it was gonna do to my sleep.

The dose increase definitely controlled the pain better. The previous dose of 4mg every 4 hours wasn’t cutting it anymore, and that’s not putting it lightly. I would maybe get an hour of relief of the 4 hours. And relief isn’t easy to measure by any means. Relief to me is giving me the ability to participate with day to day shit, instead of having my face buried in a pillow trying to mentally control this fucking nightmare. When the dose was upped, I could finally sit upright. Do computer things, actually take the trash out. Do dishes. Pick up after myself. And most importantly, not going absolutely fucking crazy from being in pain 24/7.

But what I didn’t see coming, was how Dilaudid and Ambien interact. 1 drug speeds you up, one is meant to shut you off. If the timing is wrong, my nights were spent just sitting on the couch as a zombie. Lights were on, but nobody was definitely home. As my sleep became more and more interrupted, my ability to think clearly went out the very same window of that home. From the second floor.

This went on and on until May. Then the pain started to win again. My sleep went through the fucking floor. Fast. Every day, shit, every hour that passed, it just got worse. Thankfully being on short term disability gave me the ability to just rest whenever I need. I don’t even want to imagine trying to balance this with work. But in May, I’m still going to work. I am getting things done, but as time went on, it got harder and harder to balance myself. The closer to May 31st I got, the difficulty skyrocketed.

At this point I would literally do/give anything for 8 hours of uninterrupted sleep.

Post surgery, the pain went down somewhat in my left ear, but everything else was unchanged. Of course that’s when the Ketamine came into play. Jesus it was a whole new world after the ketamine. I could sleep again. After the second day of Vancomycin, it got even better. No pus on my lip. The fire was out between my eyes. Maybe the light at the end of the tunnel?

But as I was discharged, things slowly started to roll the other way. Kinda like a rollercoaster climbing to the top of the drop, tic tic tic tic. The daptomycin helped. It was a slow improvement, but it was working. But then infectious disease took me off, that’s when the wheels came off 1 by 1. I couldn’t sleep again. All my symptoms were slowly coming back.

I’m grateful that I’m finally being listened to. By everyone. Doctors, most importantly.

So how did I fix the whole Dilaudid/Ambien thing?

You’d think it would be complex. But really it is as simple as take all my medication minus the Dilaudid at night. Once the Ambien starts to punch me into submission (can take up to 2 hours to hit) then take the dilaudid and out I go.

This literal simple change has earned me the ability to sleep 8+ hours each night uninterrupted. I feel like a brand new person. Sleep is when your body heals. Sleep is when your body can repair. Well if I can’t do that, how the fuck am I gonna get out of this revolving door.

The dalbavancin was absolutely the right call. My body feels calmer. The pus has pretty much disappeared. Yeah, I can still feel the abscesses in my face, but they are getting smaller. Even the one on my ear is almost gone. The one that would weep every time I would take out my earrings. God this is nice. But in reality it’s everything. Being on the right antibitoics, being able to (sort of) eat again, and most importantly, get enough sleep.

As we turn to next week, I am going to extend STD until mid September. The ketamine approval is still sitting in pain managements court (gonna call Monday to “help” it along), I see Hepworth on September 5th as well as my second dose of IVIG, and hopefully convincing infectious disease to hit me again with more dalbavancin. I just want to be free of this once and for all.

I just want to have some semblance of normalcy in my life for once. I don’t want to keep surviving day to day in this downward spiral I’ve been trapped in for what… 4 years now?