Thoughts on Trying to Rest

For those readers who wonder how I could write so wryly about facing death down a couple nights ago and feeling only disappointment when it did not arrive, I only can point to today as an example. I only managed to sleep for a few hours before waking in the early hours of the morning the rumbling of the neighbor's truck to the south of us. His schedule is quite odd, but I'm sure it can't be helped that he has to leave at 2:30am. But do we really need to be treated to 5 minutes of warmup and pealing tires as he heads out?

As I started to relax again, the cops chased someone through the neighborhood with a constant quick bursts on the siren. I'm sure the bursts of sound is better than just running the damn thing, but it seems pretty clear that the perpetrator was unable to hear it. No wonder considering how many play they car stereos so loudly that we are treated to the thumps through the neighborhood all day long. Or maybe this one was jabbering on the phone? But I'd be willing to bet, given the hour of the morning, that they had a few too many.

The pain had decreased substantially, but rolling over the wrong way was still uncomfortable and deep breaths were painful. Sleep was impossible to regain though mostly because my lower body aches from being so tired -- this is a regular part of my disease and not directly the result of the flu attack. As I would relax, the muscle twitches and jerks were much more severe than they have been in a long time. Once while laying on my back, everything but my bum was lifted off the bed. [On a side note, I can't imagine anyone being able to sleep next to me without being physically hurt as I kick and punch though I hope it subsides once sleep takes me. I just don't know.]

Soon it was late enough that it hardly made sense to fall asleep since I'd only have to wake up after a short while to take my morning meds. But by then, I was so tired sleep came fairly quickly and easily. I then slept on and off until something like 4:30pm so that made about 7 hours of deep enough sleep if only the neighbors didn't constantly wake me up. Oh, there was the usual calling from neighbor to neighbor and short chats on the back deck, but that hardly compares with the all day yipping of the dog across the street. [And the apartment owner got upset because my dog barked when he parked in front of my apartment and insisted that I keep him from barking "for my neighbor's benefit". But considering he only barks when they do something...]

But I digress, the worst started up about noon when the screamer started throwing chunks of metal around his backyard. After 45 minutes or so of that the pounding started as he broke and beat the scrap. I thought about getting up and watching TV, but I knew that if it didn't last too long, I would need to go back to sleep. Luckily today there was no screaming tirade. No "fucking nigger, I hate you ass hole" yelled at the top of his lungs. No "goddamn mother fuckers what the fuck are you looking at" shouted at the kids as they walk past his house on the way home. No screaming at the barking dogs which so clearly bark at the noise he makes. And no screaming like a banshee for who knows what reason. So as soon as his attention was taken elsewhere, I was deep in dreamland once again.

It wasn't until 7pm though that I decided I was ready to get up. I figured the dog wanted to go out and do some business and I was feeling a bit hungry -- the first time since Saturday. I mostly feel recovered though I feel pretty run down, but I know that will be cured with a few more nights of good, long sleep. If only the rains would return that might even be guaranteed, but with dry, clear weather the neighbors are encouraged to be out and about and noise carries. It's not that I truly begrudge them their joys, whatever they might be, it's just that I find my own joy in was that seem quite different. Peace and quiet are at the top of my list, especially when I'm recovering from intense, if short lived, illness.

So why not move? Well, I moved here to escape an even worse apartment complex with even more troubling noise issues, if that can be believed. Since I lost my house in 2003, I've tried to make it in these apartments, but even when I was young and healthy enough to be working full-time and out on the town when I wasn't, I've hated living in apartments and worked towards the day I would have a house. I had viewed the rental as the last step before buying a place of my own, but I was never quite able to get all the pieces together to make that happen. Now it seems so far away, and rentals of houses in Washington County are so expensive as to be out of my budget, that it shall never happen and I will die in a crappy apartment I detest surrounded by noisy neighbors I share so little in common with.

And minus the good foundation of a house I love, I lack the strength to reach out and do much of anything else. I'm so mentally ready to try my hand at fiction, even if it means dealing with the addition of pain in my hands and arms as I now have in my legs and feet. But I will need to be able to concentrate and there are only a few hours during the day when that is even in the realm of possibility, but still there is the speeding car screaming down the road, the horn of the freight train as it moves slowly through Hillsboro, the ever present sirens of the police, fire trucks, and ambulances, and of course, there is always someone who needs to share whatever is on his mind with everyone no matter the hour of the day.

I can paint myself as retired, but I'm not working and am not exactly rolling in cash. That must make me one of the most eligible bachelors this side of the Pacific. Let's see, there are my dashing good looks, my ample figure which owes so little to hours spent in the gyms where today's hip and motivated worship in addition or in stead of the churches I no longer believe in. So even if a potential suitor can get past my poverty, my disability, my middle aged looks, and my unintentionally combative arms and legs as I wait to for sleep to overtake my eager mind, I can only live with another man IF he can qualify for the same housing program I'm on in Washington County.

So the best I could ever hope for is some kind of separate life shared with someone else on a part-time basis. There's no hope for a house and it's clear that my condition is going to continue to deteriorate, So you see, one can't even say "at least you've got your health." There is nothing in my present life that makes putting up with the pain and life's troubles worthwhile any longer. I'm completely tired of fighting with agencies for 'care' and having people with files sticking their beak in telling me how I'm supposed to live. With no one and nothing to live for, it's little wonder that I lay down to sleep a couple nights ago and hoped that I would not wake up again. But clearly, my life rarely works as I would see fit.

This is provided as an attempt to document my current state of mind and little else. Both this entry and the prior have been written and posted as is with no rewrites or edits. Together they describe what has happened to me in the last couple of days. They simply exist as I do.

I Didn't Die Last Night

Well, I've been hit with my first bug of the season and I can hardly believe I've survived. I guess it started on Saturday since that was about the only time I could have been exposed. My caregiver came up as usual but it was clear he had been ill but promised me he was over the worst of it and not contagious. HUH! That's a laugh.

Oddly enough, on Saturday night, I had a terrible time keeping my feet warm though for the most part I felt fine, just a bit tired. But all things considered, that's not much of surprise. On Sunday I had little appetite. I basically ate rice and had some before bed some cheese and crackers and a banana.

I slept maybe an hour or so and then seemed to toss and turn finding it hard to be comfortable and always drifting between hot and cold. But considering the weather was changing from cloudy and rainy to clear and dry, I figured this wasn't really unusually. I seem to be quite uncomfortable physically whenever the weather changes dramatically (thus why this past summer was so hard on me).

As evening approached on Monday things started to change. I felt tightness in my chest: nothing major, just a discomfort. However, being a middle aged male in poor health and caring extra weight, it's pretty much been drilled into me what this stuff means. As the pain started to radiate out from right under my breastbone towards my right arm, I really began to wonder. But I figured with the stress of the last couple of weeks, it was probably nothing to worry about. The doctor has rushed me off to the hospital with chest pains before and nothing has been found so when it happened again a year or so ago, I figured it wasn't worth the expense.

I figured since I slept so poorly Sunday night, I just needed to get to sleep early even though I napped a bit during the day. So I was in bed about 9:30, but had trouble getting comfortable. The chest pains grew dramatically and there was just no way to get comfortable, but a couple hours later I drifted off for about an hour.

When I woke next I was in horrible pain. It felt like Superman and my heart and trachea in his hands and was squeezing for all it's worth. Would anyone be surprised if I said I grew quite anxious and so tried to concentrating on taking slow, deep breaths. But this was difficult and painful. My hands and arms had been outside the covers and were stone cold. My feet were as well even though they were under a blanket. I curled up in a ball, trying to get warm, but the pain was too much.

I got up to go to the bathroom, the pain was now quite severe in my upper back and my head ached. While the house seemed no colder than usual, I started to shiver horribly. Back under the covers it took at least 15 minutes to warm myself up enough to stop the shivering. By now I was convinced I had a fever but the thermometer read 99.7F. I adjusted the bed and readjusted my position.

By now my neck was arched backwards and my mouth gaped open as I lay gasping for breath. I knew I should call the doctor -- you know to get permission from my managed care gatekeeper so that I could call for an ambulance. But last time I had to sit on hold so long that I just knew there was no way I could do that with the phone this time around. I figured it was time to screw the doctors and make peace with what I figured was coming.

Honestly, closing your eyes and waiting to die isn't half as difficult as one might think -- but it requires both no fear of death and a readiness to leave what surrounds you. I had both. I decided though that I didn't want to be found naked so I got up and put on a pair of shorts. I told the dog I loved him and closed my eyes.

Clearly, the worst thing about death is the pain, suffering and waiting. Why couldn't it come swiftly? I thought about doing something to either ease my anxiety or decrease the pain, but what? And worst of all, I didn't want to mess things up and make it look like a suicide when it wasn't that. So I just lay there until finally my eyes closed again and darkness overcame me.

I saw no shafts of white light nor heard any voices. Actually, I doubt I dreamed at all. I didn't sleep longer than 90 minutes before I was up again. I decided that the fever was much worse now. I got up, and decided to use another method to take my temperature and sure enough, this time it was 102F. Not as bad as I might have expected given the chest pain. I did notice that the pain was least severe when I was standing, but I was a bit dizzy.

I went back to bed, but it was quite futile. Every position just seemed to crush my chest. Some made it quite impossible to breath. After an hour of this misery I finally got up and went out to the recliner figuring it was the best way to sit upright comfortably. I slept for another hour.

Waking just before sun up, I still felt as though I were fighting for every breath. I started to wonder who I should call -- the doctor, my caregiver, no one? By this time, I knew without a doubt that I wasn't having some sort of massive heart attack coupled with severe blockage of the pipes. I was pretty confident that I was fighting with a vicious virus and had to hope that what is left of my immune system could handle it.

I sipped some apple juice and tried to get comfortable. I just couldn't seem to get back to sleep so I got up and took the dog out for a leak. Walking was horrendous and I couldn't get him to go slow enough. We made it back inside and I settled back in but couldn't manage to find sleep.

I managed to down my meds at the usual time and then waited a bit to cancel the electrician from coming in a few hours. I then tried my caregiver at his office, but they said he'd called in ill again today, so I left a message for his wife figuring I didn't want to be the one to wake him if were sleeping. She left me a message which I got a numbers of hour later saying that he basically had a chest cold, headache and was coughing a bit. So it was clear we were affected quite differently if it is his bug I shared.

Shortly after leaving her a message, I fell asleep in the chair and finally stayed asleep for about 3 hours. Oh, if only the neighbors could have been quiet and not woken me for once! But I felt a bit better -- the fever felt less incendiary and the grip on my chest had lessened. I found I could even move around in the chair comfortably. But it was too damn bright to try and sleep in it again, so now I figured it was off to bed.

Sure enough, 5 hours of sleep and the worst had passed. I even ate a bit of chicken soup when I took my meds this evening. I watched a movie and got the dog out again for some more complete relief. I think it's time to feed him and head to bed for the night. I just hope I sleep well. I still have some minor body aches and feel unnaturally warm, my neck is rather stiff and deep breaths are still painful, but otherwise it's hard to believe that a short 12 hours ago I thought for sure I was dying.

I'll need to sleep well for the next couple of days and let my body finish getting rid of whatever has attacked me. If my caregiver was well, I might even rush off to the doctor in the next day or so to see if she's got any good test for this heart of mine. I can't help but wonder if it hasn't been damaged somehow during this attack. Additionally the key veins and arteries in and out as well as the place where the trachea splits towards each long seem to have been impacted though oddly enough I haven't coughed once nor do I feel like my lungs have fluid in them.

I wish I could report that I feel a new zest for life and feel lucky that I made it but alas, it's more like disappointment since I know that I've missed a chance to abandon this life I don't enjoy living. There hardly seems to be a reason to rush off to the doctor since she won't be able to give me a flu shot until I've been over this for some time and she can't write a prescription that will make my apartment quieter or safer. Well, maybe I will share a bit more about that tomorrow -- I think I need to go to sleep quite soon. I'm very tired.

Doing a bit better

Even though it was hotter than hell in Hillsboro today, I think I'm finally getting much needed sleep. A good 12 hours on Monday and almost as much today. I would have probably gotten a bit more except someone came banging on a door -- I don't know if it was mine or the neighbors' since no one was at mine. But I know it wasn't a hallucination since Robin was barking loudly and quite upset.

Didn't do much -- couldn't do much -- due to the heat. Watered the garden and that was about it. Poor Robin is quite uncomfortable as well. During the day he was constantly changing position and getting up and plopping down again. As long as he doesn't look at me though when he pants, I don't have any but pity for him.

Well, not much else to say at this point. I'm actually tired enough that I want to go to bed fairly soon. It's pretty incredible, but I do go to bed about the same time every night if left to my own devices.

Oh, the one other thing I wanted to record was that I've been having a bit more trouble with dizziness, especially when working in the garden as of late. I believe it is also related to the lack of sleep. And actually, just about everything is affected by it one way or the other. So I've come up with a plan and will have to see if how it works out.

I don't think it will cool down much tonight, so tomorrow will be a rough day. Oh, my legs are in horrible shape from the itching -- I don't know why, but now whenever I get a mosquito bite it turns a horrible shade of black.

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.