Post by magnusgreel on Jul 6, 2009 18:36:26 GMT
I'm tired of going online to talk about TV shows and music when I've got a condition where my nervous system is on fire, and I can't prove it or get bureaucracies to stop trying to make me prove it, and stop trying to put me out of my home if I can't.
You can't interact with the world unless you talk about things like TV shows, music etc, which I like to do, but it's more and more insane for me to, when the walls of my situation keeps squeezing in on me and destroying what tiny bit of a life I have left. but people don't want to hear about a medical condition eating you alive that is rapidly becoming impossible even to explain or describe. understandably. But I should have been able to find someplace in all these years to talk about it in depth, and get friends and allies to help. I haven't been. 30 years later, I'm still basically pretending online that I'm a regular, well person by chatting about TV, as if that isn't a bizarrely inappropriate trivializing thing to do when your nervous and immune systems are deteriorating, and bureaucrats you depend on for your survival don't believe you.
Tomorrow I hope an appt. I dread will go smoothly enough. I have to sign a few papers so as to continue getting 3/4 of my rent paid by the government. Someone has come out to the apt. to help sign the last 9 years, because of the severe light sensitivity, and because focusing within arm's reach causes eye muscle cramping and the horrible electrical CNS effects. It was easy. She'd physically point me at the spot to sign, and she'd be in and out, and it was undamaging to the condition and respectful.
Before anyone asks, typing this now is damaging too. I'd go crazy with no socializing at all, stuck in this dark apartment.
There's a whole new staff at the housing authority here, that is finding new ways to follow rules to the letter, not realizing it's just their personal interpretation of the rules. Thank god I have this one froiend left who'll do things like this... he's driving me very early tomorrow and helping me sign papers since the bureaucrat insists she can't even help me find the spot on the paper to sign, saying it's a "conflict of interest". ?!
The most insane part of my housing assistance recertification was last Thursday, when this person handling me at the *** (I'm editing out the name of the agency so as not to invite unpredictable troubles) sent my landlords a letter cancelling me (*** pays vast majority of my rent), thereby putting me out on the street. The buildings manager called me and I had to track down the *** person frantically, and someone caught her just as she was going out the door for 4th of July weekend. She told me it was just something she was doing to "cover herself legally" (??!!) and that things should be okay Tuesday when I'm being taken by Mark to their office to sign papers. Luckily the landlords accepted this when I told them, and the bldg manager told me about the insanity *** has been putting them through too. Suddenly it's all new personnel, trying to prove something by finding fault with every other thing.
The pressure of all the dangerous (to me), unpredictable, contradictory actions from the *** person have been making a wreck of me for two months or so. If I lose housing, I don't just have to move or become homeless. It's all different for someone who has to have a pitch black environment the second he needs it, etc... I'm vulnerable in a way people can't or don't "process" or get. So when the landlord called to tell me *** was pulling my living space out from under me, which would mean the end of my life (the filter I've prepared to keep light and fumes out I can't do without for even a short time), it was the worst shock I've had in years.
This shock altered me, my chemistry, and the unbearable "electricity" is way up and won't stop, no matter how much I try to sleep, even if I do sleep it's still just as high after. This is a disaster. All the pills I've relied on for decades stopped working suddenly. My brain is "fried" in a horrible way, and on top of the massive over-stimulation, I've become stupid. Every word I speak on the phone to fix situations sounds crazy and makes things worse. Simple tasks I can't do like operating a blood pressure device... I've used it often but can't now. Life is getting away from me when it's a crisis and I have to handle it. I'm three-quarters asleep.
I've left messages with 2 EI friends, and one I know has brain function lessening and the other called back to say she seems to have just acquired my sort of light sensitivity and is scared to death. We're all in deep trouble at the same time.
I'm bracing myself for more surprises tomorrow. I'm trying to sleep going back to bed to get more sleep to bring the light sensitivity down to be able to stand to make the trip but I won't be able to think and respond to challenges if they happen. They may be out to eliminate people from their rolls, so if I'm incoherent and screwing up, not answering how they want, anything could happen. She might not even have the lights down as she promised. I feel like it's torture sitting here with the nervous system stuff in my dark apartment... what's it going to be like with fluourescent lights on?! how do I sign with a towel over my eyes?
When someone sends a letter like that to my landlords, I believe it. Something bad's going on. The nightmares never let up these days, when I can sleep anyway.
Sorry, but there's no appropriate place to say all this and I couldn't hold it in any longer.
You can't interact with the world unless you talk about things like TV shows, music etc, which I like to do, but it's more and more insane for me to, when the walls of my situation keeps squeezing in on me and destroying what tiny bit of a life I have left. but people don't want to hear about a medical condition eating you alive that is rapidly becoming impossible even to explain or describe. understandably. But I should have been able to find someplace in all these years to talk about it in depth, and get friends and allies to help. I haven't been. 30 years later, I'm still basically pretending online that I'm a regular, well person by chatting about TV, as if that isn't a bizarrely inappropriate trivializing thing to do when your nervous and immune systems are deteriorating, and bureaucrats you depend on for your survival don't believe you.
Tomorrow I hope an appt. I dread will go smoothly enough. I have to sign a few papers so as to continue getting 3/4 of my rent paid by the government. Someone has come out to the apt. to help sign the last 9 years, because of the severe light sensitivity, and because focusing within arm's reach causes eye muscle cramping and the horrible electrical CNS effects. It was easy. She'd physically point me at the spot to sign, and she'd be in and out, and it was undamaging to the condition and respectful.
Before anyone asks, typing this now is damaging too. I'd go crazy with no socializing at all, stuck in this dark apartment.
There's a whole new staff at the housing authority here, that is finding new ways to follow rules to the letter, not realizing it's just their personal interpretation of the rules. Thank god I have this one froiend left who'll do things like this... he's driving me very early tomorrow and helping me sign papers since the bureaucrat insists she can't even help me find the spot on the paper to sign, saying it's a "conflict of interest". ?!
The most insane part of my housing assistance recertification was last Thursday, when this person handling me at the *** (I'm editing out the name of the agency so as not to invite unpredictable troubles) sent my landlords a letter cancelling me (*** pays vast majority of my rent), thereby putting me out on the street. The buildings manager called me and I had to track down the *** person frantically, and someone caught her just as she was going out the door for 4th of July weekend. She told me it was just something she was doing to "cover herself legally" (??!!) and that things should be okay Tuesday when I'm being taken by Mark to their office to sign papers. Luckily the landlords accepted this when I told them, and the bldg manager told me about the insanity *** has been putting them through too. Suddenly it's all new personnel, trying to prove something by finding fault with every other thing.
The pressure of all the dangerous (to me), unpredictable, contradictory actions from the *** person have been making a wreck of me for two months or so. If I lose housing, I don't just have to move or become homeless. It's all different for someone who has to have a pitch black environment the second he needs it, etc... I'm vulnerable in a way people can't or don't "process" or get. So when the landlord called to tell me *** was pulling my living space out from under me, which would mean the end of my life (the filter I've prepared to keep light and fumes out I can't do without for even a short time), it was the worst shock I've had in years.
This shock altered me, my chemistry, and the unbearable "electricity" is way up and won't stop, no matter how much I try to sleep, even if I do sleep it's still just as high after. This is a disaster. All the pills I've relied on for decades stopped working suddenly. My brain is "fried" in a horrible way, and on top of the massive over-stimulation, I've become stupid. Every word I speak on the phone to fix situations sounds crazy and makes things worse. Simple tasks I can't do like operating a blood pressure device... I've used it often but can't now. Life is getting away from me when it's a crisis and I have to handle it. I'm three-quarters asleep.
I've left messages with 2 EI friends, and one I know has brain function lessening and the other called back to say she seems to have just acquired my sort of light sensitivity and is scared to death. We're all in deep trouble at the same time.
I'm bracing myself for more surprises tomorrow. I'm trying to sleep going back to bed to get more sleep to bring the light sensitivity down to be able to stand to make the trip but I won't be able to think and respond to challenges if they happen. They may be out to eliminate people from their rolls, so if I'm incoherent and screwing up, not answering how they want, anything could happen. She might not even have the lights down as she promised. I feel like it's torture sitting here with the nervous system stuff in my dark apartment... what's it going to be like with fluourescent lights on?! how do I sign with a towel over my eyes?
When someone sends a letter like that to my landlords, I believe it. Something bad's going on. The nightmares never let up these days, when I can sleep anyway.
Sorry, but there's no appropriate place to say all this and I couldn't hold it in any longer.
