Remember all that stuff I wrote about being afraid to sleep? It turns out that this is mostly an insomnia symptom. Did you know that lack of sleep can make you go crazy? I don't mean that in the usual dancing to the good old Prince songs way. Lack of sleep will make you psychotic eventually and I wonder how far down that road I had gotten. Back in June, I was hit by multiple crises that threatened to leave my family homeless but started with a lot of noise that drove me into sensory overload. After I called the insurance company, there was little for me to do.
Let me rephrase that. There was little to do that I was capable of doing. In a moment of frustration, I carried a bag of trash out to the dumpster yesterday. It was just one bag and I was left twitching and shaking all over from the effort. I was asleep in my recliner so fast afterward that I have to say I was lucky to have made it that far. I woke hours later in severe pain and talking to myself about how doing too much never helps. There was a lot to do after the ceiling came down but too much of it was beyond my abilities. Therefore, I spent a few days pacing around the house frantic for something to do and I wasted all of my energy in this case of "the frantics."
I've defined "the frantics" before but it is worth revisiting. It is a case of being so overwhelmed by stress that I must do something every moment of every day. Normally, this is associated with severe insomnia. I go so far as to sit at the computer to write and fall asleep for a few seconds sitting there. When I wake in a brief panic from the feeling that I might be in the process of falling, I realize that I need to sleep and go to bed. That leads to lying there going over problems in my head until I either get up to do something (anything!) or I have a dream about frustration and failure that sends me rushing out of bed. I have to do something to distract myself and then I can sleep.
It turned out that the insurance company managed to relocate me on the same day that the very nice water damage mitigation tech finished. I believed that additional repairs were happening but I wasn't sure and that turned out to be just plain wrong. The time away from home did do something very important for me. My nerves were fried and I couldn't make myself slow down. Doing something useful was out of the question because I had already pushed myself way past my limits. That first night at the hotel was a chance to settle down and I spent the time twitching worse than usual.
As I've written before, the wonderful suite we were in was a balm to my nerves. The staff understood me as well as my own doctors in many ways. The thing I needed most was to be left alone in quiet and comfort. Over our ten day stay, they managed to make me feel welcome. Despite being in a strange place, I started to sleep and I recovered from the frantics. Finally, someone assaulted me in my fortress. It was a paperwork mistake where an insurance subcontractor could only approve hotel stays in five day increments. My adjuster could have handled this personally with a quick phone call but he was busy helping people deal with the freak tornado that hit Delaware and caused some damage. I didn't know about this so I was angry with his lack of attention.
In the process of straightening out this simple mistake, I learned of the real crisis. I've written too much here about the eventual battles with my parents and what actually happened didn't apply. I was forced to deal with what might have happened. I was forced to deal with a potential Armageddon that would start on the same day we left the hotel. I hadn't been able to recover fully from my previous shock so I found myself flipping out. Sleep was the first thing to go.
As things worked out, I spent my days trying to heal or, at least, mitigate the damage I was suffering. At night, Melissa and I worked together in a desperate attempt to do the impossible. We found ourselves trying to deal with the crisis of potential homelessness that could start in a few days. There was no time for sleep in my frantic mind. All of my pain control methods stopped working because they all require relaxation. Breakfast was the key to the entire day. The staff made us as comfortable as they could including one friend I wish I had managed to tip better praying with us. We survived right on the edge of a big breakdown because we had each other and because of that staff.
I was on the edge of another breakdown yesterday. I was behind on bill paying because I was convinced we were out of money because I hadn't been checking our bank balance daily. When Melissa got sick with strep, our system for getting trash to the dumpster fell apart. I produce too much trash for me to carry out by hand. She was coming home too tired to do much of anything. I'll admit that I wasn't even showering because that much standing was a daunting process. The walls were closing in on all sides. What could I possibly do about all these problems?
First of all, I woke from one of my naps and took an immediate shower. Life often looks like one of those horrifically complicated knots but, like those knots, you need to find threads in the tangle and pull on them to see if they will come loose. One loose thread tends to point to the next accessible thread until you have an untied knot. Life rarely holds still long enough for me to untie the entire knot but every little bit helps. After my shower, I took out a bag of trash with the intent of taking out more. Instead, I just beat the day long rain storm.
My next task was information gathering. I knew that I was behind on bill paying and that I was afraid my immediate bills would be more than my bank balance. When I checked, I was reminded of one of those obscure laws of checking accounts. If you put money into them and don't take it out, the money doesn't escape through some invisible hole in the universe like socks do. The money to pay March bills was there and I realized that these were March bills. While I had gotten one bill for April already, even that one was just a few days late. I silenced my inner troll who sounds way too much like a certain father of mine and remembered the Chiarian motto. "Be gentle with yourself."
The bills were paid including one that I thought was close to getting service cut off. I mention that one because that one was due a week from now. Whenever I start to fort up and close myself off from what seem to be sources of stress, that's a clear sign that I need to find accurate information. Even accurate bad news tends to be less severe than what my imagination serves up so regularly. With a clean body, clean clothes and fewer worries, I got comfortable in my recliner and had a meal. My habit of snacking constantly instead of having meals was leaving me with a constant sensation of hunger yet overeating worse than usual. After the meal, I went to sleep.
As I may have mentioned before, I woke up feeling terrible since it was raining and all. I just didn't feel hopeless the way I had earlier so I medicated and went back to sleep. That's how the rest of the day and night passed until I woke up feeling a bit better. Instead of dreading sleep, I look forward to it but not just yet. There are things to do.
Learned helplessness may not be an integral part of being a Chiarian but I imagine it's pretty common. After the first thousand times you do something that was once routine and come out in terrible pain, you might start flinching. For me, the key to dealing with learned helplessness is in two parts. Part one is avoiding the temptation to beat your head against the brick wall trying to knock it down. You can adapt your way around your limitations. A lifetime of having spina bifida yet choosing to live among healthy people taught me that you can't beat down the brick wall but you might just be able to cheat your way around it. I couldn't have done it without two angelic school nurses: Mrs. Gershman and Mrs. Blum but I still managed to attend and graduate from school with the "normals." There were a few disasters along the way but those two helped me along my paths around the brick walls.
The second part is concentrating on the things you can do. In this case, I was able to look for and find someone who gave me a lot of "mothering" away from home and find her. I wasn't able to find the other person I was looking for but I'm good at this sorta thing. It may take a lot of looking and a fair amount of letting the challenge simmer in the back of my mind but I'm fair to middling at finding people on Facebook. Be gentle with yourselves, fellow Chiarians. There may be things you can't do as well as you could before but take it easy on yourselves. Let the things you can do count as achievements. Letting yourself sleep can be a real win.
Sunday, March 30, 2014
Thursday, March 27, 2014
The Day After
Monday was pain doc day for me and it went relatively well. I was in a lot of pain and I was disoriented by the noise which was pretty severe. This was all within the margin of error of being par for the course. Ah, there's nothing quite so tasty as a well mixed metaphor. When I made it home with my reward for behaving at the doctor's office, I crashed and slept more or less the rest of the day. I got up briefly to skim through my email and I discovered that the remaining Chiari organizations had accepted me into their ranks. I went back to sleep and only got back up to see what Melissa was doing with her day off.
The problem was that I couldn't get close enough to ask. The TV was so loud that it scrambled my brain. I couldn't clear my head enough to ask her to turn it down or off. Skipping ahead to the present, I've learned since that Melissa had the volume set at a pretty standard level so she wasn't torturing me with a loud TV when she knew I was hurting. Back in the moment, I presumed this was a case of her turning up the volume uncomfortably high to deal with the consequences of her childhood spent attending bad concerts without ear protection. Yes, Melissa has lost much of her capacity to hear and I've lost most of my ability to deal with loud noises. Jack Sprat and all. I knew this before I married her and I love her for who she is.
I retreated upstairs where I was too sick and tired to work on fiction or play computer games. That's ouch to the ouch degree. Instead, I retreated to the bedroom and closed the door where the TV remained too loud for comfort until I covered my head with blankets. It was bad but I did fall asleep for close to 12 hours. I woke and the TV was much quieter which made no sense because I could tell it was one of Melissa's favorite shows. She wouldn't turn down a favorite show without good reason like me asking her to do so. My best guess was that I had been suffering from my least understood symptom: sensory overload.
What is sensory overload? I don't have a nice, neat medical explanation for this one because it just seems to happen and I'm at my least capable of making good observations while it's happening. All I can do is describe it in anecdotal terms. Noises seem louder, light seems brighter, touch that would normally reassure feels frightening and the space in my head into which I can pull back to make observations and rational decisions is filled with noisy fog. In all honesty, I'm tired now and this symptom is threatening. My only defense against this is a metaphorical bunker.
The reality of the metaphorical bunker does make some sense. I need solitude with significant physical space between me and people who aren't Melissa. Sometimes, I need Melissa to keep her distance but it helps to keep her close other times. I need darkness or dim lighting whenever possible but just putting on my sunglasses can be a big help. Quiet helps as well but quiet is not silence. Organized noise is better than silence especially if the organized noise is Pearl Jam music. Getting under a blanket is a big benefit even when the weather is too warm.
Apparently, it's too soon after the pain doc appointment and I need another break.
Since my Monday pain doc appointment, my symptoms have resolved and simplified to exhaustion. I get very short periods of productivity and long hours of involuntary sleep. Melissa and I were watching TV last night and we were watching my shows no less. This was after five or six hours of napping during the day. The pain in the back of my head became so intense that I could not stand to be awake at first. Shortly after deciding this, the guests on my shows or the actual shows kept changing in the blink of an eye. I was doing the blinking and they were awfully slow blinks. Thankfully, the shows repeated and I was able to catch what I missed the second time through.
That's the "happy ending," of course. Earlier today, I tried to implode and fall apart. One reason why so many of us manage to keep fighting to stay alive that one more day or so is that no one is out there accepting surrenders. I might say something about giving up and just going insane but I can't find the signup sheet to have my surrender accepted. There's no bin anywhere to turn in my sanity. Thus, I look for ways to keep holding on and I try to avoid making moral issues out of them. Today, I wanted to "drink until everything was funny" as I put it. If I were to put moral labels on such thoughts, I would consider myself pathetic for wanting to give in and do anything for some pain control.
Melissa did go out on her day off and bought me some beer that is on the cheap side of the range of beers I enjoy. By the time she acquired the beer, I had gotten some sleep and so I was no longer quite so emotionally desperate. I drank two bottles of beer which is far from a binge by any definition that I know. The result was the easing of the pain that sleep hadn't helped so that I could sleep more. This is an example of my next major front in symptom management. I need to trust myself more, stop accepting the logic I learned as a child that said any indulgence was wrong even if just a little wrong. So long as I am not hurting anyone, I should be able to drink a couple bottles of beer without guilt. It helps me with the pain and I need help with the pain. Even my doctors approve of the small amounts that I consume.
The Chiarian motto that I was taught was, "Be gentle with yourself." I need to stop trying to be the ideal of someone else and be gentle with myself.
The problem was that I couldn't get close enough to ask. The TV was so loud that it scrambled my brain. I couldn't clear my head enough to ask her to turn it down or off. Skipping ahead to the present, I've learned since that Melissa had the volume set at a pretty standard level so she wasn't torturing me with a loud TV when she knew I was hurting. Back in the moment, I presumed this was a case of her turning up the volume uncomfortably high to deal with the consequences of her childhood spent attending bad concerts without ear protection. Yes, Melissa has lost much of her capacity to hear and I've lost most of my ability to deal with loud noises. Jack Sprat and all. I knew this before I married her and I love her for who she is.
I retreated upstairs where I was too sick and tired to work on fiction or play computer games. That's ouch to the ouch degree. Instead, I retreated to the bedroom and closed the door where the TV remained too loud for comfort until I covered my head with blankets. It was bad but I did fall asleep for close to 12 hours. I woke and the TV was much quieter which made no sense because I could tell it was one of Melissa's favorite shows. She wouldn't turn down a favorite show without good reason like me asking her to do so. My best guess was that I had been suffering from my least understood symptom: sensory overload.
What is sensory overload? I don't have a nice, neat medical explanation for this one because it just seems to happen and I'm at my least capable of making good observations while it's happening. All I can do is describe it in anecdotal terms. Noises seem louder, light seems brighter, touch that would normally reassure feels frightening and the space in my head into which I can pull back to make observations and rational decisions is filled with noisy fog. In all honesty, I'm tired now and this symptom is threatening. My only defense against this is a metaphorical bunker.
The reality of the metaphorical bunker does make some sense. I need solitude with significant physical space between me and people who aren't Melissa. Sometimes, I need Melissa to keep her distance but it helps to keep her close other times. I need darkness or dim lighting whenever possible but just putting on my sunglasses can be a big help. Quiet helps as well but quiet is not silence. Organized noise is better than silence especially if the organized noise is Pearl Jam music. Getting under a blanket is a big benefit even when the weather is too warm.
Apparently, it's too soon after the pain doc appointment and I need another break.
Since my Monday pain doc appointment, my symptoms have resolved and simplified to exhaustion. I get very short periods of productivity and long hours of involuntary sleep. Melissa and I were watching TV last night and we were watching my shows no less. This was after five or six hours of napping during the day. The pain in the back of my head became so intense that I could not stand to be awake at first. Shortly after deciding this, the guests on my shows or the actual shows kept changing in the blink of an eye. I was doing the blinking and they were awfully slow blinks. Thankfully, the shows repeated and I was able to catch what I missed the second time through.
That's the "happy ending," of course. Earlier today, I tried to implode and fall apart. One reason why so many of us manage to keep fighting to stay alive that one more day or so is that no one is out there accepting surrenders. I might say something about giving up and just going insane but I can't find the signup sheet to have my surrender accepted. There's no bin anywhere to turn in my sanity. Thus, I look for ways to keep holding on and I try to avoid making moral issues out of them. Today, I wanted to "drink until everything was funny" as I put it. If I were to put moral labels on such thoughts, I would consider myself pathetic for wanting to give in and do anything for some pain control.
Melissa did go out on her day off and bought me some beer that is on the cheap side of the range of beers I enjoy. By the time she acquired the beer, I had gotten some sleep and so I was no longer quite so emotionally desperate. I drank two bottles of beer which is far from a binge by any definition that I know. The result was the easing of the pain that sleep hadn't helped so that I could sleep more. This is an example of my next major front in symptom management. I need to trust myself more, stop accepting the logic I learned as a child that said any indulgence was wrong even if just a little wrong. So long as I am not hurting anyone, I should be able to drink a couple bottles of beer without guilt. It helps me with the pain and I need help with the pain. Even my doctors approve of the small amounts that I consume.
The Chiarian motto that I was taught was, "Be gentle with yourself." I need to stop trying to be the ideal of someone else and be gentle with myself.
Sunday, March 23, 2014
The Toughest Part of the Day
Sleep is the key to everything for me and I am a day sleeper. It's daytime, I have an infection requiring extra rest and yet I am awake. While I remain awake, pain builds up in the back of my head and in most muscles and joints. As the pain increases, my mood gets worse until the moment comes when I simply cannot live another second. Usually, that's when I get to sleep. On the other hand, I dread sleeping as much as I dread anything in my life. There are nightmares. Usually, they involve little things like dashed expectations.
I'm back behind the wheel of my car on the open highway with my music playing nice and loud. I loved driving. It was one of those things that someone tried to convince me I could never accomplish. My eye/hand coordination was simply too poor, my reflexes were too slow and I don't have 3-D vision. I overcame the coordination with a lot of practice and repetition. Not only did I learn how to drive but I drove stick the entire time. I left lots of room for error and for my poor reflexes to cause problems and they never did. Yes, I drove like an old lady but it was for safety. I even learned how to judge distances accurately by turning my head just enough so that everything moved across my field of vision and I had no problem judging distance.
I could drive just fine in all but the worst of pain but the dizziness was another matter. I would be driving an Interstate approaching 70 mph so that no one ran me down from behind. The next thing I knew, I felt as if I were waking up or letting go of a deep daydream. There was this impression that a short but unknown amount of time had passed at 70 mph and I would get this urge to panic stop to orient myself. Once I was sure that this wasn't going away, there was only one thing to do. I turned in my license like any citizen in my place would and then I was done driving. The surgeries left enough damage on my neck that simply being in a car is agony.
These driving dreams always go the same way. I'm driving happily just like I described and then I remember that I'm driving without a license. This isn't something I would do even if I were certain to avoid getting caught because I could get someone killed. Just as I formulate a plan to pull over to the side of the road, the next rest area or whatever will be safest, the police car lights up behind me. I wake in terror, with the lingering mortification that I was going to spend time in jail and it all lingers despite the fact that this joy ride has never happened and will never happen.
My dreams of failure are the worst. My impending school burnout left me with the bad habit of leaving all my work for the end of the semester and then buckling down to make it work. I finished semesters drained, exhausted and in need of the sort of rest and relaxation I could only get at school. The idea of relaxing at home was a joke. I could never let my guard down at home so I only felt at home in school. Eventually, I dug too deep a hole for myself and my best efforts couldn't get me back out. That's not when I failed. I started failing the next semester when I needed time off in school more than anything. At the end of that semester, I went to find that extra gear of effort that I needed and it wasn't there. I never even made it to some of my finals because the situation was that hopeless.
Failure made me want to die. I wanted to die to avoid disappointing my parents which is doubly terrible because I learned that they could never be pleased. I wanted to die to avoid punishment from whoever it was that decided to punish me. I wanted to die because someone was going to take away my ability to make my own decisions. I wanted to die because I had so much frustration and rage boiling over and I was the only one who deserved to be my target. It was illogical in every way but I refused to see that until my beloved Melissa and others made me want to live.
This blog is dedicated to the principle of survival. Suicide is always a permanent solution to a temporary problem. I believe in fighting as hard as I must to live one more hour, day, week or whatever because something will get better in that time. I have rejected suicide completely. It is no longer in my bag of tricks even as some metaphorical last resort. Every part of my conscious mind is on board with this decision but it still matters in my nightmares. Once upon a time, I had to throw myself out of bed and down the hall where I could take a good look at my BA certificate when I had those nightmares. I stopped failing eventually. All it took was years of painful survival until circumstances turned in my favor and I graduated.
So, this is the time today when I get to choose between excruciating pain and dreams that seem to hurt almost as much. My conscious mind goes with Melissa on this one. Since I have to sleep eventually and the pain will only get worse, I try to sleep. On the other hand, you have the personality trait that has gotten me this far, good old stubbornness. Somewhere on the inside, I believe that it will get better if I can just stay awake long enough for it to happen.
Please let me sleep./Please don't make me sleep.
I'm back behind the wheel of my car on the open highway with my music playing nice and loud. I loved driving. It was one of those things that someone tried to convince me I could never accomplish. My eye/hand coordination was simply too poor, my reflexes were too slow and I don't have 3-D vision. I overcame the coordination with a lot of practice and repetition. Not only did I learn how to drive but I drove stick the entire time. I left lots of room for error and for my poor reflexes to cause problems and they never did. Yes, I drove like an old lady but it was for safety. I even learned how to judge distances accurately by turning my head just enough so that everything moved across my field of vision and I had no problem judging distance.
I could drive just fine in all but the worst of pain but the dizziness was another matter. I would be driving an Interstate approaching 70 mph so that no one ran me down from behind. The next thing I knew, I felt as if I were waking up or letting go of a deep daydream. There was this impression that a short but unknown amount of time had passed at 70 mph and I would get this urge to panic stop to orient myself. Once I was sure that this wasn't going away, there was only one thing to do. I turned in my license like any citizen in my place would and then I was done driving. The surgeries left enough damage on my neck that simply being in a car is agony.
These driving dreams always go the same way. I'm driving happily just like I described and then I remember that I'm driving without a license. This isn't something I would do even if I were certain to avoid getting caught because I could get someone killed. Just as I formulate a plan to pull over to the side of the road, the next rest area or whatever will be safest, the police car lights up behind me. I wake in terror, with the lingering mortification that I was going to spend time in jail and it all lingers despite the fact that this joy ride has never happened and will never happen.
My dreams of failure are the worst. My impending school burnout left me with the bad habit of leaving all my work for the end of the semester and then buckling down to make it work. I finished semesters drained, exhausted and in need of the sort of rest and relaxation I could only get at school. The idea of relaxing at home was a joke. I could never let my guard down at home so I only felt at home in school. Eventually, I dug too deep a hole for myself and my best efforts couldn't get me back out. That's not when I failed. I started failing the next semester when I needed time off in school more than anything. At the end of that semester, I went to find that extra gear of effort that I needed and it wasn't there. I never even made it to some of my finals because the situation was that hopeless.
Failure made me want to die. I wanted to die to avoid disappointing my parents which is doubly terrible because I learned that they could never be pleased. I wanted to die to avoid punishment from whoever it was that decided to punish me. I wanted to die because someone was going to take away my ability to make my own decisions. I wanted to die because I had so much frustration and rage boiling over and I was the only one who deserved to be my target. It was illogical in every way but I refused to see that until my beloved Melissa and others made me want to live.
This blog is dedicated to the principle of survival. Suicide is always a permanent solution to a temporary problem. I believe in fighting as hard as I must to live one more hour, day, week or whatever because something will get better in that time. I have rejected suicide completely. It is no longer in my bag of tricks even as some metaphorical last resort. Every part of my conscious mind is on board with this decision but it still matters in my nightmares. Once upon a time, I had to throw myself out of bed and down the hall where I could take a good look at my BA certificate when I had those nightmares. I stopped failing eventually. All it took was years of painful survival until circumstances turned in my favor and I graduated.
So, this is the time today when I get to choose between excruciating pain and dreams that seem to hurt almost as much. My conscious mind goes with Melissa on this one. Since I have to sleep eventually and the pain will only get worse, I try to sleep. On the other hand, you have the personality trait that has gotten me this far, good old stubbornness. Somewhere on the inside, I believe that it will get better if I can just stay awake long enough for it to happen.
Please let me sleep./Please don't make me sleep.
Day by Day and Working at It
Last year, it was the flu that I had for nearly a month. This year, it's the sinus infection seems to have settled into my gums for the holidays. It never specified which holidays. A few years ago, I expressed envy at people who got sick with normal things, got over them and moved on with their lives. I should have known better. I have a functionally suppressed immune system as one of those secondary things. Being around people other than Melissa is very difficult and painful. Avoiding people meant that I wasn't exposed to those exceptionally mild cases of whatever is going around so my immune system got rusty.
Chances are that those of you reading this know where I'm coming from even if you lack my exotic medical history. Chronic pain takes the social urges out of you unless you work at staying involved. The fact is that other people are painful to be around. There is the crowd sort of painful environment where someone might bump into you. I try to avoid crowds where I'm not known but. every once in a while, Pearl Jam is playing in Philly. That last show I saw was a tough one. Never had so much fun before while trying to dodge elbows from the guy next to me who was chair dancing. He did apologize after each time he connected solidly so I managed to avoid whacking him with my cane. In fact, I've never whacked anyone with my cane despite the jokes about it. Chances are that the vibrations would hurt me like a shot to the funny bone or a foul tip right off the end of a metal bat. Worse yet, the cane would probably bend in half and end up as evidence against me in court.
My real problem with that couple was the pot that both the man and the woman were smoking. Several friends informed me later that it must have been terrible pot for it to smell that much like someone hit a skunk with their car and deposited it under his seat. That leads me to my only real problem with crowds and that is the fact that a certain percentage of human beings are assholes so there will always be a few in a crowd. The pot smoking was bigger potential trouble. The uninitiated might ask why not breathe deep and take the pain relief. The first reason why pot is wrong for me is that it is as likely to cause cancer as cigarettes. We already had one cancer scare in the family over the last 12 months and it was at its scariest for about ten days with the concert in the middle.
Secondly, I get drug tested on a random basis by my pain doc. I trust the docs there to disclose the unwilling secondhand pot even after they passed on testing me that month. They said it wouldn't have shown up in a test anyway under those circumstances but I don't trust any testing where so much is at stake. If I were to lose my reputation as an upstanding citizen of my pain doc's practice, he would wean me off my meds over 28 days and leave me to scream myself insane. I know the arguments in favor of drug testing and I can even agree with some of them under certain circumstances.
The problem is that the stakes are just too high. They are high enough to ensure, assure or insure complete compliance from me whichever is the proper word there. I know better than to try concentrating against the brain fog. Avoidable pain lies along that road and I do my best to avoid such pain. I do not understand why a society believes that someone who endures pain like mine would do anything to risk his access to that which helps it stay tolerable most of the time. I do not know why society believes that the slight chance I could be lying about my pain and selling my medication is worth the inevitable result where someone gets the wrong false positive from the wrong doctor and is sentenced to a life of torture.
That wasn't supposed to end up as a rant. It's just that this sinus thing on top of my regularly scheduled episodes of extreme pain scares the hell out of me. I trust my doctors. If my doctors turn up a false positive on me (and it has happened), they double check the result and schedule me for a repeated test sooner than usual. A few weeks ago, my face was on fire along with the bone structure beneath the skin. The back of my head hurt as badly as it might on a normal sort of bad day so I needed my cold pack in order to lean back in my recliner. I needed that on the back of my head and nothing seemed to help the front of my head. Even falling asleep with my meds and some herbal tea left me feeling worse.
Thank God for Melissa. I call her my beloved for reasons that would be obvious if you knew her and I call her my pain coach because she has a good head for these things. She came home from work with cold and sinus pills that the pharmacist declared safe with my other medicines. It turns out that those pills in combination with my meds and enough sleep is sufficient for me to feel better. The most difficult part of this is getting enough sleep. The last time something even close to this happened to me, I left for a beach vacation where I slept almost eight hours each night with an afternoon nap. The pain crisis just disappeared.
Therefore, I should be sleeping right now and I'm not due to circumstances (a little) beyond my control. Why am I in a good mood? (This is a good mood? Yes. Considering the pain that's just settling in for the day, this is a great mood.) I'm in such a good mood because an unexpected message from an old friend contained unintended wisdom. Her words work in or out of context and either quoted or paraphrased. Let's try out of context paraphrasing so she keeps in touch. Others have told me similar things but wisdom can be all about the timing.
Dealing with a lifetime of pain requires taking it day by day and working at it. I have my high energy days (well, nights mostly) and my low energy days. The same thing applies to pain levels. Each day will throw a set of circumstances beyond my control at me. All I can do is take it day by day working with each set of circumstances and using them. I couldn't sleep overnight because I was knocked out all day yesterday so the exhaustion is kicking in now with the pain. I need to take the sinus medication and deal with the massive amount of water required to take them and work at shaking this infection despite the fact that I'd rather be working on fiction writing. I must sleep and deal with the nightmares so that I can feel better enough to work on my other dreams also known as aspirations. Aspirations are not the result of aspirating which is nowhere near as much fun.
If I'm willing to make that joke, sleep must be coming soon.
Chances are that those of you reading this know where I'm coming from even if you lack my exotic medical history. Chronic pain takes the social urges out of you unless you work at staying involved. The fact is that other people are painful to be around. There is the crowd sort of painful environment where someone might bump into you. I try to avoid crowds where I'm not known but. every once in a while, Pearl Jam is playing in Philly. That last show I saw was a tough one. Never had so much fun before while trying to dodge elbows from the guy next to me who was chair dancing. He did apologize after each time he connected solidly so I managed to avoid whacking him with my cane. In fact, I've never whacked anyone with my cane despite the jokes about it. Chances are that the vibrations would hurt me like a shot to the funny bone or a foul tip right off the end of a metal bat. Worse yet, the cane would probably bend in half and end up as evidence against me in court.
My real problem with that couple was the pot that both the man and the woman were smoking. Several friends informed me later that it must have been terrible pot for it to smell that much like someone hit a skunk with their car and deposited it under his seat. That leads me to my only real problem with crowds and that is the fact that a certain percentage of human beings are assholes so there will always be a few in a crowd. The pot smoking was bigger potential trouble. The uninitiated might ask why not breathe deep and take the pain relief. The first reason why pot is wrong for me is that it is as likely to cause cancer as cigarettes. We already had one cancer scare in the family over the last 12 months and it was at its scariest for about ten days with the concert in the middle.
Secondly, I get drug tested on a random basis by my pain doc. I trust the docs there to disclose the unwilling secondhand pot even after they passed on testing me that month. They said it wouldn't have shown up in a test anyway under those circumstances but I don't trust any testing where so much is at stake. If I were to lose my reputation as an upstanding citizen of my pain doc's practice, he would wean me off my meds over 28 days and leave me to scream myself insane. I know the arguments in favor of drug testing and I can even agree with some of them under certain circumstances.
The problem is that the stakes are just too high. They are high enough to ensure, assure or insure complete compliance from me whichever is the proper word there. I know better than to try concentrating against the brain fog. Avoidable pain lies along that road and I do my best to avoid such pain. I do not understand why a society believes that someone who endures pain like mine would do anything to risk his access to that which helps it stay tolerable most of the time. I do not know why society believes that the slight chance I could be lying about my pain and selling my medication is worth the inevitable result where someone gets the wrong false positive from the wrong doctor and is sentenced to a life of torture.
That wasn't supposed to end up as a rant. It's just that this sinus thing on top of my regularly scheduled episodes of extreme pain scares the hell out of me. I trust my doctors. If my doctors turn up a false positive on me (and it has happened), they double check the result and schedule me for a repeated test sooner than usual. A few weeks ago, my face was on fire along with the bone structure beneath the skin. The back of my head hurt as badly as it might on a normal sort of bad day so I needed my cold pack in order to lean back in my recliner. I needed that on the back of my head and nothing seemed to help the front of my head. Even falling asleep with my meds and some herbal tea left me feeling worse.
Thank God for Melissa. I call her my beloved for reasons that would be obvious if you knew her and I call her my pain coach because she has a good head for these things. She came home from work with cold and sinus pills that the pharmacist declared safe with my other medicines. It turns out that those pills in combination with my meds and enough sleep is sufficient for me to feel better. The most difficult part of this is getting enough sleep. The last time something even close to this happened to me, I left for a beach vacation where I slept almost eight hours each night with an afternoon nap. The pain crisis just disappeared.
Therefore, I should be sleeping right now and I'm not due to circumstances (a little) beyond my control. Why am I in a good mood? (This is a good mood? Yes. Considering the pain that's just settling in for the day, this is a great mood.) I'm in such a good mood because an unexpected message from an old friend contained unintended wisdom. Her words work in or out of context and either quoted or paraphrased. Let's try out of context paraphrasing so she keeps in touch. Others have told me similar things but wisdom can be all about the timing.
Dealing with a lifetime of pain requires taking it day by day and working at it. I have my high energy days (well, nights mostly) and my low energy days. The same thing applies to pain levels. Each day will throw a set of circumstances beyond my control at me. All I can do is take it day by day working with each set of circumstances and using them. I couldn't sleep overnight because I was knocked out all day yesterday so the exhaustion is kicking in now with the pain. I need to take the sinus medication and deal with the massive amount of water required to take them and work at shaking this infection despite the fact that I'd rather be working on fiction writing. I must sleep and deal with the nightmares so that I can feel better enough to work on my other dreams also known as aspirations. Aspirations are not the result of aspirating which is nowhere near as much fun.
If I'm willing to make that joke, sleep must be coming soon.
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