May 6 2023
Lamenting A Life Not Lived Is A Fucking Waste
So today was pretty shit. After a few days of unprecedented calm with my immune system — and I’m still not sure what calmed it. If it was something I added or didn’t add to my diet, the rain that had washed out all the pollen, the fact that the new cat litter doesn’t track like the old stuff, hormones — I don’t know, and that’s frustrating as fuck. Because it’s back to before, and I’m just feeling how shit this is. Feeling it after having this surreal, beautiful vacation from my body overreacting to everything and making everything feel like death.
Which isn’t really an exaggeration; that’s what the adrenal insufficiency basically is. Low cortisol means high adrenaline as the body tries to compensate to keep the heart pumping without enough cortisol. And for whatever reason — maybe just plain old stress on the body — the allergies cause my already low cortisol to drop and my heart to race… Whatever. Anyways.
I’m here to ramble about how, in all this frustration of noticing how little I got done today — because my brain was in inflammation la-la-land by the time I woke to this allergy riddled, low oxygenated body — that’s all I ever notice. I notice my failures. I notice the life I’m trying to get back to, instead of the life I’m forced to live. And yeah, that makes sense — I don’t want to be in this body when it’s suffering like this. It’s dumb brain, agitation, racing pulse, low blood pressure, dizzy spells, pain bullshit. It makes sense to not want to be present for this… but it’s been fucking years now. Years of trying to get to a point of living while not wanting to feel the very uncomfortable life I do have, and yeah, where’s it going? What am I doing if all I’m doing is trying to get to something instead of experiencing the life I have?
My sister-in-law is dying. I’m not going to get into it, because it’s still in the process (with hope, but really, the kind of all you have is hope hope, because facts aren’t there to offer an actual substantial path through as it all crashes and burns.) And this is really about me and my feelings about shit — and my fuck, no one who is going through what she is going through and/or is close to her should hear my random emotional spewing as I cope with the news while thinking about my own selfish shit. So the less I connect me and my rambling to her and her family’s personal experiences, the better.
So yeah, dying. I get the latest “this isn’t us saying she’s dying, but shit just got worse and it’s obvious she doesn’t have long” news, while my body is going through its resurgence of fucking misery as I’m thrown back into the fear of if this is going to be forever. Is this all my life is but this damn allergic reaction and weakness and can’t breathe or sleep or think from racing heart, etc, etc? And it’s like, ten years now. Ten fucking years, and what’s waiting for me is what’s waiting for everyone, and this has been how I’ve been forced to spend the last decade.
I am not experiencing my life. I’m waiting for shit to get better. I’m still waiting for shit to get better, and I’m just losing years. And who knows what the toll is, right? PTSD alone is physical damage to the brain and body as it’s left unchecked and courses all these survival chemicals through you day after day, wearing out the organs until your body can’t do it anymore. My adrenal insufficiency is secondary; my adrenals still function for now. But my pituitary fucked off at some point, and without it communicating to the adrenals, my body can’t produce a safe stress response during times of crisis. Simple shit can drop me, and I saw it when the allergies were so bad I needed far more hydrocortisone to maintain. This allergy thing isn’t just stealing my time, and the things I do, but also my health. And I’m just, I dunno, done with it all. Like done, done.
That whole thing of life is what you do while you’re busy making plans? My entire life revolves around a condition that doctors still haven’t figured the fuck out. Because it’s not just allergies; if it were just allergies, the allergy shots would be enough. A freaking 24 hour anti-histamine would do the job. But it doesn’t. Certain scents — scents that don’t contain a protein source, aka, nothing for my immune system to react to — set off this cascade of insanity through my system, and nothing has been done to solve it. To even diagnose it.
It’s the specialist issue. Every doctor only knows one thing, and they don’t know where that thing connects with other things (aka, the human body), so I’m left going to one doctor for neurological symptoms (without a neurological source), another for adrenal issues (for a pituitary problem source) another for allergies (but not for the allergic responses to scents), and nothing is getting solved. Yes, pieces have been patched, but I still can’t go a breath near a damn litterbox without my heart feeling like it’s going to burst out of my chest, a migraine forming, and my brain trying to drip out of my ears.
I lost my 30s to this shit. Missed time with my partner and the people in my life I can’t get back. I’m missing people — life is happening around me, and I am missing out because every day is still this fucking issue, just a little less life altering. Destructive enough that I’m lying to myself thinking I can just jump right back into writing, but not so destructive that I can’t believably lie to myself. Oh, I can lie to me just fine.
I am ten years in this broken body and brain, trying to get back to the person I damn well know I am… while defined by ten years of this to everyone on the outside. If I lose that inner image of me, this is all that’s left. This. Sick, broken, every day a battle that I don’t want to have to fight anymore. When do I get to start being again? Or is it just going to always be this, battling this thing not interesting enough for the medical world to solve, but debilitating to me until it wins. Is this all it’s going to be, just running from suffering until my body just can’t do it anymore and dies?
I’ve lost me. I don’t like who I’ve become as a result of years of this. Fight. Defiance. Running on rage and bitterness and feelings of loss. The joy and enthusiasm and just pure optimism stripped from me as this damn thing keeps going. I’m sick of having to be wise, understanding of the things most people don’t spend a second thinking about because it scares the fuck out of them to even consider that they’re going to die one day. I was thinking about that since small, an abused foster kid knowing death was inevitable and the fleeting flicker of self was going to gust out. And so everything after was in defiance of that. Because fuck death and fuck anyone who would dare think they could cross boundaries and ignore others autonomy. I am running on embers from fighting to survive against this dumb fuck illness, and I don’t know how to fuel myself any other way.
This is who I’ve become while waiting to get back to myself…
Ten years a reaction. How the fuck am I supposed to know how to live a life now? Seriously? This thing has trained me back into a base animal surviving, and I see it, I fight with it, but until I can figure out what the pattern is I’m supposed to be slipping into, it’s just always going to be this default. This lack of living as time passes by and I’m left reacting.
It took my fucking vision. Fuck. There was so much art I wanted to make. So much I was waiting to do, and then it took that too. Like, what the fuck was I waiting for when at least then my eyes weren’t screaming in migraine pain or unable to focus? How was that somehow worse than this, and do I really think that I can still wait? That somehow it’s going to magically get better as this body keeps aging and breaking down from each reaction? Like, what does the pain matter in the face of that, of knowing that this could be my last chance?
Why do I have to keep counting all the shit I’m not doing, all the time being spent on things not getting done, instead of feeling any aspect of pride for the things I am doing? For the life I am living? Why does it always have to be a chase, the taste of dissatisfaction forever haunting me, fighting a clock as I add up all the hours not lived the way I want? If it hadn’t gone down this way, would I be searching for the elusive — I mean, it’s whoever I thought I was a decade ago, right? Like, is that what I’m looking for, trying to get back to who I thought I was before sickness interrupted me? Or was it before — who I could have been if not for PTSD and a fucked up start at the earliest of ages? Even then, if I had everything I think I wanted, could there be any satisfaction for this vicious brain that just wants to think all the thoughts and to know more?
Why the fuck does this version of me have to be so fucking cynical, and bitter, and so dissatisfied with all I’ve built, like all it can see is “what could have been” bullshit. I hate time travel stories. Absolutely hate them because it literally couldn’t have been. That’s just our dumb fuck brains insisting that “if this, then this” so that what, we can hate ourselves a little more for not having had a choice with our past? Or thinking we had a choice and blaming ourselves for not taking it? Why is being human this damn stupid and needlessly painful?
Lament of the fallen.
Dissatisfaction is self victimization at the base psyche level. To have so much, but then to let it sour as that thought crosses “if only…” It is so fucking worthless an endeavor to waste ones thoughts on, and I don’t really even think about it — actual thinking on “what if” is me shutting it down with “don’t be stupid”. But I failed to notice that I have been living that feeling every day while thinking I was safe, because the thoughts weren’t there.
No, the thoughts I have are… just wait. If you can only get past this, find an answer, things can change. If you can solve this, you can start living your life. This is too hard right now, but wait, heal — surely we can heal — and it’ll get easier.
10 years waiting for a different life because I couldn’t let myself enjoy the one I have. And yes, it sounds reasonable at some level — it sounded reasonable AF when in pain and fighting for every moment — but it’s all I know now. I don’t know what to do next or how to do it. I’m just stuck with this feeling that something was supposed to have changed, and shit was supposed to be easier — something that isn’t this is still needed — and it’s not here.
But there’s nothing left. It’s just me not here. I’m not living yet, still waiting for something that’s never going to come.
When every moment of every day beyond @ a 4 hour window was pure exhaustion and the pull of sleep, I couldn’t let myself sleep. I was fighting for so long, I didn’t know how to let myself sleep when I needed to sleep. And that’s been this illness for years now. This desperate need to measure my life being lived, only knowing I was alive by how I battled with everything, instead of just living. Instead of resting when tired like a being that didn’t define sleep as death.
But no, I was doing all the things and saying it was nothing while waiting to be allowed to do anything else. There was no meaning to anything because it was me sick, me interrupted, in the waiting room of life furiously scribbling notes instead of where I thought I was supposed to be and what I was supposed to be doing. And now, it doesn’t matter what I do; that feeling is who I am. Dissatisfaction and waiting to get to the place — wherever the fuck I’m supposed to be that means I’m finally there instead of here, and can finally get on with living.
It is such a waste of a life. Not illness — illness is just a part of life. Death is a part of life. But not appreciating the one life I’m living? That’s the fucking atrocity. And I don’t know how to change. It is so deeply ingrained, needing to know I’m doing something “worthwhile” based on a metric system I’m never going to be allowed to win, partially because it’s not mine. It’s trauma. The conceptual world I built around this illness and who I am at the center of it needs to break, the way it did for the PTSD of early years. But I have been so stubborn to even acknowledge that the illness was fresh trauma on top of me treating old trauma. I just wanted to be elsewhere already, not having to do all the fucking work all the time just to enjoy a simple moment.
I’m tired of being me, whoever this reaction has become. I had a really shitty day, got some very devastating news, and have still managed to find a way to beat myself up for not being whatever the fuck my judgmental brain thinks I’m supposed to be to be okay right now. There is no winning in here. I can’t even let myself feel bad without trying to make me a “better person” by pointing out how I’m currently experiencing life wrong — seriously, what a fucking monster of a brain I have…
The thing is… My adoptive mother was sick all the time. Cancer. She didn’t tell us until we hit high school, so she just seemed, you know, tired a lot. All the time. Missing out on the things we did. Barely doing things for herself as it progressed.
I think at some level, I feel like I’ve failed her that I could ever get sick and let it interfere with my life. Because I owed it to her to live what she couldn’t.
That’s what surviving is, right? When you lose someone, but you need to hold onto them. So you carry them with you, no matter how heavy the weight, because that proves love. We are so primal, we still instinctually believe the pain of love is proof of love. So we carry that pain. We hope to be forged by it, changed by it, so that we never lose the ones we love.
My mother had such big expectations for me, and a will of steel. And if she hadn’t died before I started college, I’m sure I would have been on the path she wanted, the one she could never tell me, could never prepare me for, because the cancer got her brain by the end. But my fuck, I was going to be someone for her, she loved me that much. I loved her that much.
So maybe I remember tonight why it’s never going to be enough, whatever I do. A part of me is still waiting for her to tell me how to become the person who proves that I still have her with me, and it’s going to be a long wait…
I guess survivor’s guilt increases the older one gets, and the more you’re left surviving while others don’t… I dunno. This is life. Fucked up, mundane, human. Forever coping with being alive.
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