VCS Returns
It's clear that I will be unable to escape a return of Villa Crappy Syndrome (VCS). It is much as I feared and tried to warn people about -- construction, heat, noise, fireworks, airshow -- all take a very terrible toll on my health. It's clear no one wants to hear about it since they feel there is nothing they can do and heaven forbid my poor health should cause them any discomfort.
It's been made quite clear to me that it's horrible form to talk about one's own problems -- we are only allowed to brag about how we overcome them. And of course we must always brag about how much money we spend on the stuff that counters unhappiness. My job is listen indulgently and suffer miserably in silence always pretending that other's happiness more than makes up for my lack of any.
No more sleeping for 12 hours. No more waking up free of pain. Instead I fight for 4 - 6 hours of sleep a night though to get that I seem to have to spend at least 12 hours in bed. The pain has spread up my legs and I even woke up with it in my hands.
More problematic is the return to hallucinations and terrifying dreams. If I don't keep my mind well occupied, it screams along with conversations, stories, sounds, all sorts of non-existent stimuli. It reminds me a lot of when my family was here last year and we went out for dinner late. They would return me home past my bedtime after being at The Grand Lodge with the omnipresent loud music and I would try to go to sleep and could. I would see non-stop flashing lights, much like being at a disco, even though there is nothing other than tasteful dining lighting at The Grand Lodge.
I learned then that all the input does something to my brain -- most likely aggravated by at least one or more of the medications I take daily -- which basically causes a type of overload. It then continues to process for some time. I also learned that if I did something like watch a movie for a couple of hours, I could 'come down' and have a better chance to sleep.
It's now my belief that summertime provides a similar abundance of stimulation -- fireworks, running fans, screaming freaks, barking dogs, screeching children, coughing neighbors, etc. It's not as severe as going to Grand Lodge, but it is definately present.
Such feelings then tend to be followed by terrible sleep. It's quite hard for me to tell when I'm asleep and when I'm not and then I have these horribly vivid dreams which feel like I live an entire real though equally fictious life. I have to deal with people who do not exist but with whom I have a long history and there is a certain amount of persecution. I fear for my life constantly and feel like I scream in my sleep, but I have no real way to know for sure.
It's also apparent that sleeping with windows open not only reinforces a lack of privacy but also a sesne of vulnerability. Therefore I don't sleep as well. I basically wake up frequently until it's time to close up the place. For whatever reason that's just enough 'work' that it makes it almost impossible for me to return to sleep no matter what I do.
It's also now clear that I now have a cycle which I describe as "feeling almost human" that starts in about 8:00 and tapers off about 2:00. I've been aware of the nighttime cycle for some time, but have been able to basically avoid the morning cycle by rolling over, taking my meds, and going right back to sleep. Getting up and closing windows is too much to be able to accomplish such, especially with the accompanying neighborhood soundtrack.
This morning it took almost 5 hours before I finally returned to sleep. I then slept another couple hours -- that's after sleeping a couple hours prior to being woken up for meds.
So What the Hell Am I To Do?
I can call the fine folks at Washington County Health, go off and fill out another ream of paperwork, and then informed that I'm depressed and must take whatever medications they fancy. Of course they have NO EXPERIENCE with AIDS patients, but plenty with substance abuse and domestic violence. I will have to prove I don't have those problems and then I will be dumped in the "all others" category.
The best possible outcome I can hope for is that they inform my primary care physican of their treatment so she can 'fix' it later on and that I'm medicated into enough of stupor that I somehow make it through until the rains start again. Of course then I will have to battle to get off the medications at that point -- after all the environmental cause will abate -- but since I will be diagnosed as 'mentally ill' they wil fight that and they will also have the ability to declare me 'likely to cause harm to self or others' and then what rights will I have.
Is it clear that I don't have any trust in the public mental health system? This is based entirely on my own prior experiences and those of people I have known who are in much the same situation as I -- relying on Medicaid for healthcare.
I don't know if the HIV Clinic is currently offering any mental health care or not. They've had a very difficult time keeping services available even though it is quite clear that HIV patients often need different treatment than the public at large -- if for no other reason than to avoid drug interactions with the assortment of medications we already take. I could also try to get back into the naturopathic clinic I used to attend, but given the difficulty in traveling, how exactly is that going be any easier now than it was when I stopped going?
So why not just try and get through the summer -- you know, suffer in silence -- as I feel myself descending into madness. It might start to ease in as soon as 2 months. Then, if we have solid rain day in and day out, I might be back to my normal self by November. Then I'll have 4 months to enjoy before the gradual slide back into hell.
Can't I Just Get Inoperable Cancer, Please?
I don't know how long I can continue if something should happen to Robin. I feel like he's the only reason I'm going on at this point and I honestly don't believe I would act to save my life if I had a heart attack or some other such critical medical condition.
I find myself fantasizing about all the crazy way people die -- maybe I could find one of those roofing nails in the back and have it imbedded in my body by accident. If I slap a dirty bandage on it and allow it fester, what's the possibility of tetnus or septasemia? And with all the mosquitoes outside, maybe I can also contract West Nile or some other wonderful sickness.
When I get a cancer diagnosis, I am clear I don't want to seek any treatment. If it wasn't so iffy, I'd just dump my HIV meds down the toilet or try and find someone to give them to who actually wants to live and can't get medication.
I don't have a place in this world any longer and few will honestly miss me when I'm gone, so why prolong this? This summer has been worse than I had imagined and we still have weeks to go. I have no reason to believe that next summer will be much better.
I've only had a handful of blueberries so I guess I need to have something to eat. I really have very little appetite these days (also a sign of VCS). I'm also tired of writing at this point.
It's been made quite clear to me that it's horrible form to talk about one's own problems -- we are only allowed to brag about how we overcome them. And of course we must always brag about how much money we spend on the stuff that counters unhappiness. My job is listen indulgently and suffer miserably in silence always pretending that other's happiness more than makes up for my lack of any.
No more sleeping for 12 hours. No more waking up free of pain. Instead I fight for 4 - 6 hours of sleep a night though to get that I seem to have to spend at least 12 hours in bed. The pain has spread up my legs and I even woke up with it in my hands.
More problematic is the return to hallucinations and terrifying dreams. If I don't keep my mind well occupied, it screams along with conversations, stories, sounds, all sorts of non-existent stimuli. It reminds me a lot of when my family was here last year and we went out for dinner late. They would return me home past my bedtime after being at The Grand Lodge with the omnipresent loud music and I would try to go to sleep and could. I would see non-stop flashing lights, much like being at a disco, even though there is nothing other than tasteful dining lighting at The Grand Lodge.
I learned then that all the input does something to my brain -- most likely aggravated by at least one or more of the medications I take daily -- which basically causes a type of overload. It then continues to process for some time. I also learned that if I did something like watch a movie for a couple of hours, I could 'come down' and have a better chance to sleep.
It's now my belief that summertime provides a similar abundance of stimulation -- fireworks, running fans, screaming freaks, barking dogs, screeching children, coughing neighbors, etc. It's not as severe as going to Grand Lodge, but it is definately present.
Such feelings then tend to be followed by terrible sleep. It's quite hard for me to tell when I'm asleep and when I'm not and then I have these horribly vivid dreams which feel like I live an entire real though equally fictious life. I have to deal with people who do not exist but with whom I have a long history and there is a certain amount of persecution. I fear for my life constantly and feel like I scream in my sleep, but I have no real way to know for sure.
It's also apparent that sleeping with windows open not only reinforces a lack of privacy but also a sesne of vulnerability. Therefore I don't sleep as well. I basically wake up frequently until it's time to close up the place. For whatever reason that's just enough 'work' that it makes it almost impossible for me to return to sleep no matter what I do.
It's also now clear that I now have a cycle which I describe as "feeling almost human" that starts in about 8:00 and tapers off about 2:00. I've been aware of the nighttime cycle for some time, but have been able to basically avoid the morning cycle by rolling over, taking my meds, and going right back to sleep. Getting up and closing windows is too much to be able to accomplish such, especially with the accompanying neighborhood soundtrack.
This morning it took almost 5 hours before I finally returned to sleep. I then slept another couple hours -- that's after sleeping a couple hours prior to being woken up for meds.
So What the Hell Am I To Do?
I can call the fine folks at Washington County Health, go off and fill out another ream of paperwork, and then informed that I'm depressed and must take whatever medications they fancy. Of course they have NO EXPERIENCE with AIDS patients, but plenty with substance abuse and domestic violence. I will have to prove I don't have those problems and then I will be dumped in the "all others" category.
The best possible outcome I can hope for is that they inform my primary care physican of their treatment so she can 'fix' it later on and that I'm medicated into enough of stupor that I somehow make it through until the rains start again. Of course then I will have to battle to get off the medications at that point -- after all the environmental cause will abate -- but since I will be diagnosed as 'mentally ill' they wil fight that and they will also have the ability to declare me 'likely to cause harm to self or others' and then what rights will I have.
Is it clear that I don't have any trust in the public mental health system? This is based entirely on my own prior experiences and those of people I have known who are in much the same situation as I -- relying on Medicaid for healthcare.
I don't know if the HIV Clinic is currently offering any mental health care or not. They've had a very difficult time keeping services available even though it is quite clear that HIV patients often need different treatment than the public at large -- if for no other reason than to avoid drug interactions with the assortment of medications we already take. I could also try to get back into the naturopathic clinic I used to attend, but given the difficulty in traveling, how exactly is that going be any easier now than it was when I stopped going?
So why not just try and get through the summer -- you know, suffer in silence -- as I feel myself descending into madness. It might start to ease in as soon as 2 months. Then, if we have solid rain day in and day out, I might be back to my normal self by November. Then I'll have 4 months to enjoy before the gradual slide back into hell.
Can't I Just Get Inoperable Cancer, Please?
I don't know how long I can continue if something should happen to Robin. I feel like he's the only reason I'm going on at this point and I honestly don't believe I would act to save my life if I had a heart attack or some other such critical medical condition.
I find myself fantasizing about all the crazy way people die -- maybe I could find one of those roofing nails in the back and have it imbedded in my body by accident. If I slap a dirty bandage on it and allow it fester, what's the possibility of tetnus or septasemia? And with all the mosquitoes outside, maybe I can also contract West Nile or some other wonderful sickness.
When I get a cancer diagnosis, I am clear I don't want to seek any treatment. If it wasn't so iffy, I'd just dump my HIV meds down the toilet or try and find someone to give them to who actually wants to live and can't get medication.
I don't have a place in this world any longer and few will honestly miss me when I'm gone, so why prolong this? This summer has been worse than I had imagined and we still have weeks to go. I have no reason to believe that next summer will be much better.
I've only had a handful of blueberries so I guess I need to have something to eat. I really have very little appetite these days (also a sign of VCS). I'm also tired of writing at this point.
Labels: health
posted by xj at 9:36 PM
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