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| Photo copyright Aji, 2015; all rights reserved. |
Problem is, the road doesn't go anywhere.
I'm not writing "for" anything, or anyone, except myself. Sometimes I just need to get it out of my system. If you feel like reading a downer, feel free, but before you do anything else, take this to heart. I am not looking for sympathy, help, or advice. If you're thinking of doing any of those things, or of telling me what works, what I have to try, what will fix it . . . don't. If you think for one moment that, in all the decades I've been dealing with my illness, there's anything out there I haven't tried, you're nuts. Also, two of the features of this complex of medical conditions are an unusually high rate of sensitivities and side effects to various substances, and an equally high rate of drug failure. So there's a lot out there that I've tried, with no success (or affirmatively negative results), and frankly, a lot of Big Pharma solutions that I've tried only to have them fail to work at all or cause a crash within days, or subsequently get black-boxed and/or pulled from the market entirely.
I've written before about my particular complex of conditions, and they are complex. Most of them also go back to childhood — hell, to infancy and even earlier. My family has always been notoriously unhealthy, a toxic combination of long-term poverty, nutritional stupidity, and and really virulent mix of genetic factors. Some people just shouldn't have kids, for all kinds of reasons; I think my family covered all those bases, and then decided to take some sort of twisted victory lap.
At any rate, on top of all of that, there are a couple of old injuries that have haunted my entire adult life, and are now getting worse. Sustaining a really bad concussion last August has now taken those effects to new heights, or maybe I mean new depths. Since mid-August, I've been in trouble. Real trouble. I crashed, hard, around September 1st, and if you've never had an extended personal experience with autoimmune conditions, however much you think you understand what I mean by "crash," you don't. It's not an "exacerbation"; it's not a "flare." It's hell. I endure them periodically, and eventually pull out of them after whatever length of time my body decides to take joy in inflicting misery on me.
This, time, though, it's been five months, and it's still not over.
Not only that. It's getting worse.
Every morning when I get up, it's worse than the last. The pain is excruciating. My balance is completely torched. Getting up is agony. The only thing worse is staying in bed.
I haven't had a headache-free day in months. Hell, I haven't had a pain-free day in . . . well, pretty much ever. Yes, that includes childhood. When people talk about being "pain-free," I don't believe them. I can't get my ahead around what such a state of being would be like. It's like a unicorn — a mythical, magical thing that exists only in fairy tales.
But now . . . I don't know what to do anymore. I'm not getting any younger, and I'm terrified that this is my new normal. Not that I've had a "normal," you understand, but normal for me meant the ability to sublimate pain to a really significant degree. I actually have a high tolerance for it; I've had no choice but to develop one.
Now, though? This is the kind of pain I can't get away from. Head, neck, shoulders, back . . . I'm never free of it. Ever. And nothing — NO.THING., nothing, so don't even go there — helps more than minimally and very short-term. And that's not even going into all that's effed up everywhere else in my body, from arms to hands to hips to legs to feet. And all the associated and opportunistic problems that accompany these kinds of conditions.
So, yeah. I'm scared.
And you can expect me to be grumpy; chronic acute pain does that to people. You wanna unfriend/unfollow, do it. I get it. Nobody wants to hear it, and everybody's secretly worried that it's somehow contagious anyway. I get especially grumpy when I see constant bullshit, using of other people, gaming of systems, all the unfairnesses of life compounded by people lacking in ethics, morality, decency, or even basic humanity. Lot of that going around lately.
So this is it. I honestly don't expect improvement; this is, in all likelihood, the next in a long series of cascading, deteriorating, degenerating slides. All that remains is for me to get my head around and deal with WHAT IS.
Because I already know there ain't no road out.
No comments. No sympathy. Please, just . . . don't. I'm not up to what basic civility requires.
*Addendum: Just to be clear, this is not a money issue. It's a limits of science/medicine/technology/whatever issue. All the money in the world wouldn't fix it. So please don't interpret it that way, because it has nothing to do with this.
All content, including photos and text, are copyright Aji, 2015; all rights reserved. Nothing herein may used or reproduced in any form without the express written permission of the owner.
I'm not writing "for" anything, or anyone, except myself. Sometimes I just need to get it out of my system. If you feel like reading a downer, feel free, but before you do anything else, take this to heart. I am not looking for sympathy, help, or advice. If you're thinking of doing any of those things, or of telling me what works, what I have to try, what will fix it . . . don't. If you think for one moment that, in all the decades I've been dealing with my illness, there's anything out there I haven't tried, you're nuts. Also, two of the features of this complex of medical conditions are an unusually high rate of sensitivities and side effects to various substances, and an equally high rate of drug failure. So there's a lot out there that I've tried, with no success (or affirmatively negative results), and frankly, a lot of Big Pharma solutions that I've tried only to have them fail to work at all or cause a crash within days, or subsequently get black-boxed and/or pulled from the market entirely.
I've written before about my particular complex of conditions, and they are complex. Most of them also go back to childhood — hell, to infancy and even earlier. My family has always been notoriously unhealthy, a toxic combination of long-term poverty, nutritional stupidity, and and really virulent mix of genetic factors. Some people just shouldn't have kids, for all kinds of reasons; I think my family covered all those bases, and then decided to take some sort of twisted victory lap.
At any rate, on top of all of that, there are a couple of old injuries that have haunted my entire adult life, and are now getting worse. Sustaining a really bad concussion last August has now taken those effects to new heights, or maybe I mean new depths. Since mid-August, I've been in trouble. Real trouble. I crashed, hard, around September 1st, and if you've never had an extended personal experience with autoimmune conditions, however much you think you understand what I mean by "crash," you don't. It's not an "exacerbation"; it's not a "flare." It's hell. I endure them periodically, and eventually pull out of them after whatever length of time my body decides to take joy in inflicting misery on me.
This, time, though, it's been five months, and it's still not over.
Not only that. It's getting worse.
Every morning when I get up, it's worse than the last. The pain is excruciating. My balance is completely torched. Getting up is agony. The only thing worse is staying in bed.
I haven't had a headache-free day in months. Hell, I haven't had a pain-free day in . . . well, pretty much ever. Yes, that includes childhood. When people talk about being "pain-free," I don't believe them. I can't get my ahead around what such a state of being would be like. It's like a unicorn — a mythical, magical thing that exists only in fairy tales.
But now . . . I don't know what to do anymore. I'm not getting any younger, and I'm terrified that this is my new normal. Not that I've had a "normal," you understand, but normal for me meant the ability to sublimate pain to a really significant degree. I actually have a high tolerance for it; I've had no choice but to develop one.
Now, though? This is the kind of pain I can't get away from. Head, neck, shoulders, back . . . I'm never free of it. Ever. And nothing — NO.THING., nothing, so don't even go there — helps more than minimally and very short-term. And that's not even going into all that's effed up everywhere else in my body, from arms to hands to hips to legs to feet. And all the associated and opportunistic problems that accompany these kinds of conditions.
So, yeah. I'm scared.
And you can expect me to be grumpy; chronic acute pain does that to people. You wanna unfriend/unfollow, do it. I get it. Nobody wants to hear it, and everybody's secretly worried that it's somehow contagious anyway. I get especially grumpy when I see constant bullshit, using of other people, gaming of systems, all the unfairnesses of life compounded by people lacking in ethics, morality, decency, or even basic humanity. Lot of that going around lately.
So this is it. I honestly don't expect improvement; this is, in all likelihood, the next in a long series of cascading, deteriorating, degenerating slides. All that remains is for me to get my head around and deal with WHAT IS.
Because I already know there ain't no road out.
No comments. No sympathy. Please, just . . . don't. I'm not up to what basic civility requires.
*Addendum: Just to be clear, this is not a money issue. It's a limits of science/medicine/technology/whatever issue. All the money in the world wouldn't fix it. So please don't interpret it that way, because it has nothing to do with this.
All content, including photos and text, are copyright Aji, 2015; all rights reserved. Nothing herein may used or reproduced in any form without the express written permission of the owner.
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