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Still alive.
Jun. 14th, 2024 06:33 pmHey, folks. It's been too long since I posted an update, and things have been unbelievably complicated with my life.
First, I have Chronic Fatigue Syndrome, a nasty neurological disorder that is probably the cause of me being in pain my entire life. Yes, that's right - I was in pain as far back as I can remember. When I was 27, and realized "other people *must* have more energy than I," I was right, but I was also understating my problems to an unbelievable degree.
The biggest reason why I didn't know I was in pain, is, my pain is neurological. Neurological pain can present in a lot of different ways, because it's what you feel when your body is saying "STOP THAT!" but not in any of the normal ways. The other reason I didn't know I was in pain, was, doctors said I was fine, so my family said I was fine, so I eventually stopped saying things weren't fine.
When I'm in pain, my language processing can go offline. I can't read, or write, or speak, or listen, the way I normally can. A lot of other crap can go offline, too - the more pain and fatigue I suffer, the less I'm able to do anything. In fact, that's my fatigue marker: when *everything* is harder than it should be. Which, if you think about it, makes CFS one of the more annoying disabilities to have.
Just this year - after suffering from extremely disabling issues over 4-5 years - I finally realized "if I can't hold a conversation - HOLY CRAP! A disability lawyer can tell me what tests to take, to prove I'm disabled!" Up until that point, I was freaking out about how to apply for disability, when my brainpower was so severely curtailed so much of the time. The idea that the severity of my disability would make my job *easier* once I got the right attorney just didn't occcur to me. That's how constrained my brainpower gets.
Anyway. Most of my life, I didn't want to live. I mean, what was I living *for*? I was constantly in pain and miserable, but I didn't know I was miserable *because* I was in pain, so, I couldn't solve the problem.
Later on, when my ability to be sociable was constrained, because my disability was clearly apparent to any casual observer, I was told I was a terrible friend, a hideous lover, and given the clear message that I should not accept companionship from people who offer it, because they might not enjoy my company any longer.
I knew that I wasn't a great friend or lover at the time, of course; I was just trying my best, as I always had... just like I always do. Oh, I fuck things up, make no mistake, but it's not because I don't care. In many cases, it's because I couldn't explain. But does it matter? There were plenty of unkind facts hurled at me, by a hateful bully who had me helpless.
That there was factual basis to the attacks hurt; it always does. But worse, it showed that doing my absolute best just wasn't good enough to avoid being savagely attacked. If you've known me for a good many years, you've heard me say it: sometimes it's not what is *said* that hurts, so much as that it is said to *hurt* you. That a person who knows your secrets is hitting your vulnerable points.
Anyway: that's when I started wanting to be dead, because what's life without love and friendship? But I couldn't talk about that, because no one understood the situation. And right now, I can only communicate in limited bursts, even if I wanted to. I think I'm healing. Of course, there's the sense of having failed epically at everything I've ever tried to be or do, but I've been dealing with *that* for some 50 years, so I don't think it'll kill me this time either.
And, I am alive. If I get long term disability benefits, I expect I'll stay alive, barring horrible things. See, now that I understand I'm in pain, a lot, I can start working on solving, or reducing, some of the problems, because I know their cause.
I can't fix the most critical problem - the pain and exhaustion that means I'm destined to watch life pass me by, because I'm too damaged to enjoy it, but, once I can devote my life to getting better full time, maybe I can fix a bit of that, too.
I have more to say, later.
I'm sorry I haven't been more communicative, and I'm especially sorry I have to be melodramatic here, but, for the past few years, I've put so much effort into staying alive, I haven't had much else left.
First, I have Chronic Fatigue Syndrome, a nasty neurological disorder that is probably the cause of me being in pain my entire life. Yes, that's right - I was in pain as far back as I can remember. When I was 27, and realized "other people *must* have more energy than I," I was right, but I was also understating my problems to an unbelievable degree.
The biggest reason why I didn't know I was in pain, is, my pain is neurological. Neurological pain can present in a lot of different ways, because it's what you feel when your body is saying "STOP THAT!" but not in any of the normal ways. The other reason I didn't know I was in pain, was, doctors said I was fine, so my family said I was fine, so I eventually stopped saying things weren't fine.
When I'm in pain, my language processing can go offline. I can't read, or write, or speak, or listen, the way I normally can. A lot of other crap can go offline, too - the more pain and fatigue I suffer, the less I'm able to do anything. In fact, that's my fatigue marker: when *everything* is harder than it should be. Which, if you think about it, makes CFS one of the more annoying disabilities to have.
Just this year - after suffering from extremely disabling issues over 4-5 years - I finally realized "if I can't hold a conversation - HOLY CRAP! A disability lawyer can tell me what tests to take, to prove I'm disabled!" Up until that point, I was freaking out about how to apply for disability, when my brainpower was so severely curtailed so much of the time. The idea that the severity of my disability would make my job *easier* once I got the right attorney just didn't occcur to me. That's how constrained my brainpower gets.
Anyway. Most of my life, I didn't want to live. I mean, what was I living *for*? I was constantly in pain and miserable, but I didn't know I was miserable *because* I was in pain, so, I couldn't solve the problem.
Later on, when my ability to be sociable was constrained, because my disability was clearly apparent to any casual observer, I was told I was a terrible friend, a hideous lover, and given the clear message that I should not accept companionship from people who offer it, because they might not enjoy my company any longer.
I knew that I wasn't a great friend or lover at the time, of course; I was just trying my best, as I always had... just like I always do. Oh, I fuck things up, make no mistake, but it's not because I don't care. In many cases, it's because I couldn't explain. But does it matter? There were plenty of unkind facts hurled at me, by a hateful bully who had me helpless.
That there was factual basis to the attacks hurt; it always does. But worse, it showed that doing my absolute best just wasn't good enough to avoid being savagely attacked. If you've known me for a good many years, you've heard me say it: sometimes it's not what is *said* that hurts, so much as that it is said to *hurt* you. That a person who knows your secrets is hitting your vulnerable points.
Anyway: that's when I started wanting to be dead, because what's life without love and friendship? But I couldn't talk about that, because no one understood the situation. And right now, I can only communicate in limited bursts, even if I wanted to. I think I'm healing. Of course, there's the sense of having failed epically at everything I've ever tried to be or do, but I've been dealing with *that* for some 50 years, so I don't think it'll kill me this time either.
And, I am alive. If I get long term disability benefits, I expect I'll stay alive, barring horrible things. See, now that I understand I'm in pain, a lot, I can start working on solving, or reducing, some of the problems, because I know their cause.
I can't fix the most critical problem - the pain and exhaustion that means I'm destined to watch life pass me by, because I'm too damaged to enjoy it, but, once I can devote my life to getting better full time, maybe I can fix a bit of that, too.
I have more to say, later.
I'm sorry I haven't been more communicative, and I'm especially sorry I have to be melodramatic here, but, for the past few years, I've put so much effort into staying alive, I haven't had much else left.
