Walking a tightrope just to barely function

Gambling on Life: The delicate balancing act of health

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filed under "Gambling on Life"

by WFL

This post, like others that will follow it, is a continuation of my Gambling On Life series.

In addition, this piece was written on 7/1/2023, and edited later to make a little more sense before publishing on 7/8.

Like method acting, I sometimes prefer to express my creativity about painful experiences as I experience them.

I did this with my record Redisintegrated, and I am doing it now.

I am not well.

It takes a lot of work for me to be considered “functional”. I rely on a variety of things either A: Proceeding as normal, B: happening at just the right time, or C: not happening at all. Frequently, if just one of those things fails, I end up in the state I’m in right now.

A shell of myself.

I’m currently feeling constant dizziness, am barely able to focus, feel numbness in my extremities, can’t think through the pain fog, and in general hurt more than usual. I don’t want to eat, my temperature sensitivity is going nuts, and I am exhausted at the idea of even getting up to go pee.

This is due to 2 simple things happening.

#1: I did not get to sleep at my usual time, and did not get any semblance of a normal amount of sleep, being disturbed nearly every hour throughout the night.

#2: A partial cause of that lack of sleep was severe storms, which tends to exacerbate my pain.

As far as #1 goes, sleep tends to go.. Not well. Ever.

A normal night’s sleep for me is usually going to sleep around 10 to 10:30 PM (to ensure sufficient exhaustion to fall asleep), and waking up 2-3 times throughout the night because of pain, noise, or my girlfriend getting up to get a drink. I’m a very, VERY light sleeper due to my pain levels. Also: It takes me about 15-30 minutes to initially fall asleep, and maybe 10-15 minutes to fall back asleep after waking up in ideal conditions.

I typically wake up on my own at around 4:30 or 5 AM. I don’t want to get up that early, but if I don’t get up, my body will end up in more pain from laying in bed.. And that’s with a nice Purple mattress (the best I’ve ever slept on), the perfect pillow, and me knowing the exact positions I can lay in to sleep without making things worse.

In last night’s case, I was stuck staying up because my GF wanted to get out and do karaoke. I was in a bad state of pain that night, so I was not about to go myself. Instead, I stayed home, read, and waited for her to come home so I could finally get to sleep.

Once she was finally home and settled I decided to pass out on the couch (which I picked out specifically because it was just right for me to sleep on), laying my head down at around midnight, since she wasn’t going to be falling asleep for a while still yet.

I woke up to: Loud storms, the trash can on the porch getting blown down, a small limb hitting the house, the power going out, the power coming back on and my smart bulbs in the lamp behind me turning all turning on full brightness because that’s what they do when power comes back on, my GF’s TV getting turned back on because she likes extra noise when she sleeps (ordinarily I wait for her to fall asleep and then turn it down to an acceptable level for me), and.. Pain.

Lots and lots of pain that always comes with bad storms.

These two things lead to me stumbling around, barely able to focus. I did manage to get out to a local coffee shop in the late morning and caught up with friends while also working on code (and by some miracle refactored the static path generation code here to actually generate the right number of pagination paths), but my functionality that morning was more so thanks to taking a full dose of Prednisone rather than my usual half dose (I try to limit my reliance on it because it’s not a good long-term solution with real risks).

As the day progressed I became less and less functional. By noon I collapsed again on the couch, but there was too much going on to be able to actually sleep.

People like me may seem like we’re functioning, but it takes a lot of fucking work to be publicly-consumable.. And you don’t see us before and after those public moments.

A friend I caught up with today is in a similar predicament as I. She lives in constant, unceasing pain. We talked about when we go to the doctor and get asked to describe our pain, we have to ask.. “Do you mean the normie pain scale, or MY pain scale?”

I’ve had both shingles and a barely-small-enough-to-pass kidney stone. Both of those are about what my really, really bad pain days are like as part of my normal life as a spoonie.

So.. When I say delicate balancing act, I mean it. A bad night’s sleep for you may mean you’re just a little tired. A bad night’s sleep for me means I may not even be able to even get up to go to the bathroom due to pain and a concern of hurting myself even more by stumbling around in a fog.