Stages of grief: recycled

I think the time has come for me to accept that I probably won’t beat this mystery disease…a disease doctors dismiss, at best…that I will likely suffer with it for the rest of my life, whatever that consists of. I’m not saying I won’t still try, only that reality is setting in hard. And it hurts. And pisses me off. And hurts. And pisses me off. Makes me wail and bawl like an idiot through long, dark nights…days, as well.

I’m grieving the loss of my life as I knew it. The loss of me, as I knew me. It’s a familiar process; I’ve been through it before with other diagnoses, but this is different. It feels like a real death. I want to lash out hard at the unfairness. I miss ME terribly. And I’m not talking about the pre-dx-list me…I’m talking about the ZebraSoup me, chock full of pain and fatigue and so on. I was okay with that. It sucked at times, but I always found my joy. I had my mission in life, I had my sense of self, and I was still ME.

THIS has stolen those things like a thief in broad daylight, in a crowded parking lot, while no one notices…and what I’ve lost is just not okay with me. It’s so much more than I am willing to part with. I don’t know how to make peace with this. It’s the hardest thing I’ve ever faced, and it’s kicking my ass. I’m a fighter, so that’s saying something. Not much can kick my ass like this.

It isn’t in my nature to quit and go off sniveling…but I can’t let go of that grief and anger cycle. I haven’t found the path through that yet. I only know that, if I ever want even a small piece of something like a shadow of my life as it was, I have to find that path. Because I am so sick of grief and anger and loss. I want joy again.

In the best of possible outcomes, I want to be cured of this…or at least have it become so manageable I am able to dismiss it most of the time. Reality says that in a world where neither the CDC nor any doctor will help me (no research, no medical support whatsoever….you’re on your own, baby) I am ill equipped to wipe out spirochetes like these; invasive bastards that leave nothing unsavaged. The daily regimen just to deal with the physical minimum takes hours, leaving me exhausted, leaving nothing for me…even simple basic self-care tasks are eaten away by this beast.

There was a time I would have thought of Dysautonomia in similar terms, when things were bad. But this is a whole new circle of hell. It’s something I cannot describe to you. It defies words. (Even if I could, I wouldn’t want to…it’s just gross). It is the kind of battle that pushes you to the edge of sanity, sometimes past it, daily. I can’t waive a white flag of surrender, because I can’t bear the idea of letting this beast just have me. I have to try to fight it, even if the odds are stacked so far against me, I might as well be a one-girl D-Day invasion. My odds are about that good. Which is to,say, they suck.

So I must find some way to make peace with life in battle; a losing proposition that I will continue to face every day, knowing that fact, and still find some piece of a life I want to have. A tiny piece is acceptable, at this point, because it sure beats the alternative.

This is not meant to whine, and I don’t want pity. It is what it is. It sucks hairy ape crotch. I just need to vent…give voice to my cycle of grief, and find something….it may require intense meditation, or perhaps a miracle (whipped or not). It just can’t be what it is.

Part of that means I need to change what I am doing. I can’t do this myself; I need help. Help with hygienic tasks, help with keeping the house in a manner that is conducive to living with this kind of beast (the kind of cleaning I need done involves a lot of sterilization, for example; even laundry mist be done in a certain rather labor intensive way that is far beyond my capabilities). So the help I need has to face a larger burden than they would in a home without this requirement for extra measures.

Hopefully, if I can find (and afford) the right kind of help, maybe the fight won’t be as daunting. Reinforcements would be so damn welcome in this battle.

I feel like I live in the trenches of WWI, dug into utter misery with no end in sight, and about that pleasant. Horrible would be a compliment.

I hope something gives…some wisp of sunlight filters into my room…something…

This is my reality. I feel no obligation to sugarcoat it. It’s not my duty to pretend it’s okay when it is anything but okay. Don’t ask how I am. You don’t want to know the answer, I promise you; and I don’t want to have to think about it to give the answer. I don’t like pretending, so it’s best just to skip all that. Stipulate that I am not at all okay.

Meanwhile, I’m still trying my heart out, still fighting…and searching for some kind of acceptance for what is going on (what may continue as long as I live). I hope it doesn’t get worse. Kinda way past my limit already. Now would be a great time for the cosmos to return some of that good karma. That would be appreciated beyond measure.