First, I must appease the Fates and the pain gods by noting that I'm not sure my recent surge of bad days/nights is over. Five minutes from now, I could decide to save this post because I'm in so much pain that I cannot think beyond the desire to be unconscious. Presuming that this isn't the case, I'm going to write a few things about how the few days of relative relief from screaming agony seems as bad as the agony itself. This isn't true but I believe that the human brain protects itself by selectively forgetting the worse pain. Therefore, it seems as if cleaning up the mess left over from days of being beyond what can stand is worse somehow.
One of the things that I did to cope with this last extreme assault was to set aside everything but dealing with the pain. That meant spending every moment when I wasn't forced by nature's call or a doctor appointment in my chair sipping water, soda or beer depending on my strategy of the moment. There was a near 12 hour period where the only way I felt remotely comfortable was to have my teeth immersed in a sip of beer that I held in my mouth as long as I could. It surprised me that this worked but one of those big rules is that you don't question something that works. If the relief was all in my head, so be it. That meant 12 hours of pounding the beer much harder than I wanted to and now it means cutting back to a more reasonable amount of drinking provided that level of pain stays away.
My normal level of consumption is to sip one or two beers in a twelve hour period once or twice a week. Of course, I love the taste of beer so cutting back is unpleasant and I watch myself for any signs that I'm drinking for the sheer enjoyment of it. That's okay but not for while after drinking so much more than I want to drink for health related reasons. This can be summed up by two facts. I love my liver and want it to function perfectly for decades to come. Also, yellow is my favorite color unless we're talking about my skin. I don't know how much alcohol will damage my liver and I don't want to toe that line.
I spent about a month effectively lying flat on my back hoping that the vultures didn't start to circle. As I tried to transition from all out pain control mode to something more responsible, I discovered that my method for keeping my bills paid close enough to on time had broken down for at least one bill. As usual, the shock and fear of seeing a power bill for double its normal amount didn't survive a closer examination. I had failed to pay the April bill on time so they sent me the combined April/May bill with the normal May due date. I replied by making an immediate payment of the April portion. Being behind in my bills was a nightmare that I want to keep far behind me. The April bill was paid with April money leaving the May bill to be paid with May money when it arrives. There is no crisis.
The near crisis happened because my email provider decided to save money with a forced upgrade that I can't afford and I can not keep small numbers of messages in my tablet inbox anymore. If there is one lousy inbox message that I want to keep, it will disappear in a few days. That isn't long enough when I'm flat on my back dealing with a pain crisis. I need that email message to be right there with the rest of business that must be handled in a timely manner. In fact, I would prefer my bills sent by email to flash some angry red color until I deal with them. Seriously, I know the tech exists to keep bills pinned to the top of my inbox indefinitely and to change the font color after a few days of no action.
I'm going to take advantage of the fact that Melissa won't be reading this to bitch just a little bit. I brought this to her attention at what turned out to be an inconvenient time for her. I had awakened her with a pain emergency that morning because I didn't want to do so the night before. She could have resolved this with a beer delivery before I said a word the night before or that morning after a good five or six hours of extreme pain. Maybe she was concerned with my overall level of beer consumption like I was or she might have just been tired. I was in one of my usual conundrums resulting from being so dependent. I wanted to go to sleep in bed and get as many hours of horizontal sleep as possible but I was afraid of falling asleep just long enough for her to leave for work adding 12 hours to my potential point of relief. I awakened her accidentally in my indecisive state though I figure the caterwauling car chorus did the actual waking but I'll take the blame. It was an accident but I wasn't exactly broken up about it. This sort of pain has a real draining effect on my pride.
So I acknowledged her sacrifice as usual especially I didn't need to awaken her this time. I had managed to drift off lightly downstairs and spoke to her on the way out the door as she made a special trip for my sake. I suppose she could have made the stop if I hadn't awakened her that morning. I suppose I would have survived but I don't know how big a role the beer played in my partial recovery yesterday. Maybe I never would have calmed down enough to sleep and I would still be hissing each breath in and out in utter misery. We don't know because she came through.
Last night was different. I was pumped up from my small victory over panic and I saw her light was still on in the bedroom. I came into the room quietly and saw she was still awake so I told her my victory story with the added cautionary tale of the old system breaking down. You know that old saw about how men want solutions when they bring up problems and women want sympathy unless they specify otherwise? All I really wanted was an attaboy for catching the mistake before the crisis point and agreement that [our email service] sucks unpleasant and graphic things. She was tired enough to miss the distinction between a current crisis and one that was resolved. I was tired and wanted to fall asleep ASAP. Instead, we had an overly detailed conversation about using calendar programs.
Okay. Melissa was forgiven before I got to sleep a few minutes later and I hope that I'm just as forgiven. My real beef is with the lousy company making living with a disability just a smidge more difficult. The lousy email setup might be a simple fix. I might have to go searching through a few dozen pages to find the help file for the default that was changed. After the research, I might get my older setup back which would be nice yet I am angry at the idea that some fool has all but forced me to waste energy I don't have to fix a problem I didn't cause. I'm angrier that this desktop PC will need to be replaced with money better used for other things because Microsoft had to stop supporting XP in order to drum up sales for Windows 8.
I know...get off my lawn, you miserable brats and all that jazz. I'm no Luddite but I have to make and carry out big plans every time I have to make a big tech upgrade. I have yet to replace my VHS copy of "Star Trek II: The Wrath of Khan" or anything else from that series but "Wrath of Khan" was the best and I don't have it on DVD or whatever will replace those.
All of this involves things I hurt too much to notice two days ago. Life isn't fair but there should be a way to let chronic pain sufferers concentrate on feeling better instead of adding pain to the rest of life's bullshit.
Sunday, April 27, 2014
Friday, April 25, 2014
Why I Haven't Posted
Though no one has suggested to me, in so many words, that my life is easy and that living with pain is no big deal, I wonder if most people know how big a deal it is. I haven't posted because reclining in a chair and watching TV has been more than I've been up for the past few weeks since the temperature changed from Winter to Spring overnight. Let me state that more clearly. Reclining in a chair and watching TV/using my tablet to play games is too much. I end up spending the better part of a week coming down from the additional strain of a doctor appointment, posting here or spending more than an hour writing fiction. Much of that hour is spent deciding what I was doing when I left off from the last writing session.
There are a few types of discomfort that I hardly bother counting on my good days. Have you ever had electricity sent through you for medical purposes? There are various tests that send small amounts of electricity through you mostly to test nerve function. I believe the main one is called an ENG but I never bothered to learn what it stands for. There are two stages to the test that I remember the most. One measures the amount of time it takes for an electrical pulse to get from Point A to Point B. The second part to that test involves seeing how much current it takes in order for you to notice it and bite the tech's head off. (They told me the second part was optional but electrical current is unpleasant even in small amounts.) Honestly, I didn't bite any heads off but it was close. My pain doc's techs are very nice so I do my best to be polite in return.
The second piece of electrical medical equipment I have some experience with is called a TENS machine. After a nearly ten year quest, I was issued my TENS unit. The concept behind this is that it will jam nerve signals that carry pain to your brain. This was part of my quest to have surgery done to establish the same setup permanently. The dream was to jam my headaches and my arthritis pain so that I could go back to living life. Unfortunately, the tech who came to my house delivering the machine was very clear on one thing: you cannot use a TENS machine anywhere around your head. I was supposed to use the machine for 20 minutes a day every day for a month as a start but I noticed something bad after a few days. The TENS machine was sending current through the muscles that suffered electrical pain already in order to try getting to my knees. When I saw the doctor three weeks later, he praised my decision to stop using the machine because it was making the symptom worse. I just wanted to mention this to let you know my pain docs are sane and all. Also, the good news was that I was able to describe that part of my pain as electrical pain once and for all.
On a good day, I feel as though that TENS unit is on all the time with a boost from the ENG devices. I feel as though my muscles in both arms and legs are firing constantly so that it is uncomfortable to sit still. I twitch all over like that ENG current is going through me. The electrical pain never truly stops. Sometimes, I get busy enough with a project that I can ignore it. At this low level, it is the relentless quality that makes it add up to something horrible. That, of course, is a good day.
Once upon a time, I was chatting with my father about my arthritis pain. At the time, the best comparison I could give him to my joint pain was him going skiing for the first time in a season and forgetting/neglecting any stretching or warming up. This was during one of the longest good periods we had where we talked about things so he reacted very positively. There was no way he could suffer that sort of pain every day and not go crazy. That's what all the newbies say but I'm starting to doubt the existence of pain that would make you go crazy. Also, the new medicine at the time and other new medicines since then has made things better. Now, I feel as though someone beat me up to some dangerous degree but last week. Maybe someone who wasn't that tough used me as a punching bag yesterday. That's a good day.
Touch sensitivity is a good next thing to describe because it also resembles healing after a good ass kicking. Over the past year, this pain has extended to my face. I feel bruised in the literal sense though I stopped looking for the black and blue years ago. This past summer featured me going to Melissa and asking her where the bruises on my face were. The sensitivity was so bad that I believed there would be actual bruises. On a good day, I can manage this with being careful who touches me and what I touch. I don't dare do something like sitting on the floor to play with the cats because the floor is too hard. That's with the nice, new carpeting we had put in since the flood. I had to find a new recliner at the end of last summer because the old one didn't recline and wasn't soft in all the right places. I got lucky with the hotel even in the small room because there was a chaise lounge that fit pretty well with some pillows in the right places. As long as I don't have any bad touches and my stress levels stay normal, I won't have a problem.
The most intense regular pain is the back of my head. I will spend about two hours in pain that leaves me unable to speak understandably or even think clearly. The effort of pushing words out at a volume that Melissa will understand some days causes a new "bruise" to form on my head and it will fade in a few minutes unless I have to keep trying. If I rest the back of my head against the recliner's headrest the wrong way, it does something to the angle of my neck. I feel this rush of pain, nausea and vertigo that is nothing less than a whirlpool in my head. This is going on right now so I would be unable to speak with you but it seems I can type anyway.
The most intense head pain - there are too many kinds for me to list here - is known throughout the Chiari community as the ice pick headache. Every once in a while, you hear some horror story about someone being murdered with an ice pick but I'm not sure exactly how that would work. An ice pick headache feels as if someone has driven an ice pick into - usually the top of - your head. It hurts terribly and the pain is concentrated in a very small area the way you'd think an ice pick would feel. It's been a while since I stopped looking for blood but I would excuse any newbie who thought she had an actual wound. I get these ice pick headaches every day in the transitional seasons: Spring and Fall.
It just so happens that constant pain makes it very difficult to function. There were things that I took for granted that I simply cannot do anymore. Not being able to work was a serious blow to my ego. My wallet has gotten far more used to it but my ego feels the pain as if it were new. Unless my dreams come true and I make it as a professional writer, I will not have a career. I'm trying not to feel the burst of shame I felt when someone made this accusation against me: You don't plan on getting back to work. Since then, I have come to the conclusion that I don't have the resources to waste on a pointless attempt to return to work. Not being able to work closes wide swaths of life to me from not being able to invest money to not being able to go on vacation a few times each decade.
My jaw dropped when I was asked that serious question about working because I was losing ground in the ability to care for myself already. Getting a shower is an adventure in keeping my balance so it isn't an every day thing anymore. Having spina bifida makes this a bigger deal than it might be otherwise but it can't be pleasant. I make a special effort to be at my cleanest before leaving the house because I do have some pride left despite all the fraying. I am able to write fiction on certain days when my symptoms make sense but I've had to give up politics. When right wingers start spouting their bullshit, I unfriend them on Facebook and distance myself from them in the rest of my life. I have nothing spare for trying to change their minds in reasoned discourse.
I lack the energy to discipline myself enough to take basic steps in caring for myself. Who knows where the line is but I know I must be creeping up on a point where I would need some sort of nursing care to stay alive. On the average day of my life, I realize that it's probably only our relative poverty that keeps me out of a nursing home or hospice. I don't know what I should do but I know what I will do. I'll try to work on long term and short term projects, keep my faith going whether in God or Melissa and I will find times to enjoy life. I'll keep putting one foot in front of the other until I manage a major breakthrough or lose my footing and die in a very deep hole. I'm not ready to die.
There are a few types of discomfort that I hardly bother counting on my good days. Have you ever had electricity sent through you for medical purposes? There are various tests that send small amounts of electricity through you mostly to test nerve function. I believe the main one is called an ENG but I never bothered to learn what it stands for. There are two stages to the test that I remember the most. One measures the amount of time it takes for an electrical pulse to get from Point A to Point B. The second part to that test involves seeing how much current it takes in order for you to notice it and bite the tech's head off. (They told me the second part was optional but electrical current is unpleasant even in small amounts.) Honestly, I didn't bite any heads off but it was close. My pain doc's techs are very nice so I do my best to be polite in return.
The second piece of electrical medical equipment I have some experience with is called a TENS machine. After a nearly ten year quest, I was issued my TENS unit. The concept behind this is that it will jam nerve signals that carry pain to your brain. This was part of my quest to have surgery done to establish the same setup permanently. The dream was to jam my headaches and my arthritis pain so that I could go back to living life. Unfortunately, the tech who came to my house delivering the machine was very clear on one thing: you cannot use a TENS machine anywhere around your head. I was supposed to use the machine for 20 minutes a day every day for a month as a start but I noticed something bad after a few days. The TENS machine was sending current through the muscles that suffered electrical pain already in order to try getting to my knees. When I saw the doctor three weeks later, he praised my decision to stop using the machine because it was making the symptom worse. I just wanted to mention this to let you know my pain docs are sane and all. Also, the good news was that I was able to describe that part of my pain as electrical pain once and for all.
On a good day, I feel as though that TENS unit is on all the time with a boost from the ENG devices. I feel as though my muscles in both arms and legs are firing constantly so that it is uncomfortable to sit still. I twitch all over like that ENG current is going through me. The electrical pain never truly stops. Sometimes, I get busy enough with a project that I can ignore it. At this low level, it is the relentless quality that makes it add up to something horrible. That, of course, is a good day.
Once upon a time, I was chatting with my father about my arthritis pain. At the time, the best comparison I could give him to my joint pain was him going skiing for the first time in a season and forgetting/neglecting any stretching or warming up. This was during one of the longest good periods we had where we talked about things so he reacted very positively. There was no way he could suffer that sort of pain every day and not go crazy. That's what all the newbies say but I'm starting to doubt the existence of pain that would make you go crazy. Also, the new medicine at the time and other new medicines since then has made things better. Now, I feel as though someone beat me up to some dangerous degree but last week. Maybe someone who wasn't that tough used me as a punching bag yesterday. That's a good day.
Touch sensitivity is a good next thing to describe because it also resembles healing after a good ass kicking. Over the past year, this pain has extended to my face. I feel bruised in the literal sense though I stopped looking for the black and blue years ago. This past summer featured me going to Melissa and asking her where the bruises on my face were. The sensitivity was so bad that I believed there would be actual bruises. On a good day, I can manage this with being careful who touches me and what I touch. I don't dare do something like sitting on the floor to play with the cats because the floor is too hard. That's with the nice, new carpeting we had put in since the flood. I had to find a new recliner at the end of last summer because the old one didn't recline and wasn't soft in all the right places. I got lucky with the hotel even in the small room because there was a chaise lounge that fit pretty well with some pillows in the right places. As long as I don't have any bad touches and my stress levels stay normal, I won't have a problem.
The most intense regular pain is the back of my head. I will spend about two hours in pain that leaves me unable to speak understandably or even think clearly. The effort of pushing words out at a volume that Melissa will understand some days causes a new "bruise" to form on my head and it will fade in a few minutes unless I have to keep trying. If I rest the back of my head against the recliner's headrest the wrong way, it does something to the angle of my neck. I feel this rush of pain, nausea and vertigo that is nothing less than a whirlpool in my head. This is going on right now so I would be unable to speak with you but it seems I can type anyway.
The most intense head pain - there are too many kinds for me to list here - is known throughout the Chiari community as the ice pick headache. Every once in a while, you hear some horror story about someone being murdered with an ice pick but I'm not sure exactly how that would work. An ice pick headache feels as if someone has driven an ice pick into - usually the top of - your head. It hurts terribly and the pain is concentrated in a very small area the way you'd think an ice pick would feel. It's been a while since I stopped looking for blood but I would excuse any newbie who thought she had an actual wound. I get these ice pick headaches every day in the transitional seasons: Spring and Fall.
It just so happens that constant pain makes it very difficult to function. There were things that I took for granted that I simply cannot do anymore. Not being able to work was a serious blow to my ego. My wallet has gotten far more used to it but my ego feels the pain as if it were new. Unless my dreams come true and I make it as a professional writer, I will not have a career. I'm trying not to feel the burst of shame I felt when someone made this accusation against me: You don't plan on getting back to work. Since then, I have come to the conclusion that I don't have the resources to waste on a pointless attempt to return to work. Not being able to work closes wide swaths of life to me from not being able to invest money to not being able to go on vacation a few times each decade.
My jaw dropped when I was asked that serious question about working because I was losing ground in the ability to care for myself already. Getting a shower is an adventure in keeping my balance so it isn't an every day thing anymore. Having spina bifida makes this a bigger deal than it might be otherwise but it can't be pleasant. I make a special effort to be at my cleanest before leaving the house because I do have some pride left despite all the fraying. I am able to write fiction on certain days when my symptoms make sense but I've had to give up politics. When right wingers start spouting their bullshit, I unfriend them on Facebook and distance myself from them in the rest of my life. I have nothing spare for trying to change their minds in reasoned discourse.
I lack the energy to discipline myself enough to take basic steps in caring for myself. Who knows where the line is but I know I must be creeping up on a point where I would need some sort of nursing care to stay alive. On the average day of my life, I realize that it's probably only our relative poverty that keeps me out of a nursing home or hospice. I don't know what I should do but I know what I will do. I'll try to work on long term and short term projects, keep my faith going whether in God or Melissa and I will find times to enjoy life. I'll keep putting one foot in front of the other until I manage a major breakthrough or lose my footing and die in a very deep hole. I'm not ready to die.
Friday, April 4, 2014
The Elephant in the Room
(I wrote most of this on Tuesday, April 1st, when I discovered the problem but decided to hold off posting until I had resolved the problem on my own. The point was that I was writing about money and chronic pain not trying to beg money from anyone. I figured that this would be much clearer on payday after I had paid the bill in question.)
There are a few reasons why I never write about money here. One of them is the relatively good luck we've enjoyed over the last two year period. I'm broke at the moment beyond a small amount of savings that will go to medical stuff but the good news is that this condition will last a total of three days. In the bad old days, I can remember six month periods where we had to ration everything to make it two weeks so that we could resupply for two more weeks of tight rationing. That's not the case here. The only reason I noticed this hiccup is because I tried to pay the annual sewer bill and my check of the bank balance revealed that I couldn't. The bill is due Monday and we get paid on Friday by direct deposit so this is no crisis.
Another reason why I don't write about money is that money woes have such a simple solution. One of you kind souls could help me out and I can't even finish that sentence. We're all in the same boat here and a lot of us take on water from time to time. I won't ask you to prioritize my needs right there beside your own. That sort of request leads to the guilt I feel whenever one of the many charities or political organizations I'd like to support gives me a call. As for a random internet person with unmet needs, that has its own dangers. You just have to remember good old what's her name. You remember the brave girl who wrote about her struggles on the 'net and received gifts galore. If you don't remember her the way I don't remember her, there's a good reason for it. She never existed. An adult woman with no kids wanted attention and started writing in this persona of this brave girl. People sent her gifts for the daughter totaling thousands or tens of thousands of dollars. I can't remember which it was but it was all fraud. When people wanted to meet the brave daughter, she succumbed to whatever disease she supposedly had.The FBI closed in but I don't remember what happened to her. I'm real, I have limits and I have to live up to those limits.
One good example is pain control. I hurt a lot and I hurt all the time. If I had my way, I would spend more than the annual budget for the state of Delaware (I live here. I'm not picking on my home state.) on various methods of pain control and distractions to help me ignore the pain. It's a bottomless need and I'm not proud of that but I live according to my limits and not these wants or needs. There may come a time when I screw something up badly enough that I must ask friends and family for help but I'm trying to avoid that. It's the sorta card that you can only play once so it had better be life or death when you do.
Okay. That was a bit stern of me. If you are me, it had better be life or death if I play the, "help me because I'm sick" card. If you are someone else like everyone else in the world, you can set your own limits. I assure you that I don't wait for matters to reach the life or death plateau before I try to get help for my beloved but I also don't attempt general fundraising with her needs either. She has her own support group of very good people like I do but there are two differences. The first is that she's my beloved and, as such, the most important person in the world. Secondly, she doesn't have the combination of bottomless need and learned helplessness that I get from being in my 15th year of chronic pain.
In truth, I will never turn down an offer of help freely given except perhaps as an attempt to be polite. There is just so much need and so few resources to meet it. I live in a neighborhood with a dumpster instead of curbside trash pickup. This comes from privatization of such services. Private companies like "one size fits all" solutions except when dealing with those rich enough to afford personal service. In absolute terms, things could be much worse. Some people in this neighborhood live half a mile from the dumpster as the crow flies. I cannot walk out to the dumpster from where I am so I guess the additional distance wouldn't matter but someone always tells me that things could be worse when I complain. Umm...duh! Things can always be worse. That said, I lack the resources to get the trash I produce to the dumpster on a regular basis. If I had enough resources, there would be a way to deal with the problem. I do not and such is life. Sometimes, this leads to what you might call Third World conditions here. If people were to link this problem to me where I live, the response would not be help. I figure that someone would try to fine me.
Money is the elephant in the room because I could never have enough so there's no point in complaining about it. I suppose my entire life is based on a pain control model. My doctors can't take all my pain away without killing me so I take what I can get and work on ignoring the rest. I can't deal with the problems in my life in a satisfactory matter so I lower my expectations. I woke up early today in pain because it was raining overnight. I'll be in pain later because it's raining or because a change in barometric pressure will force the rain away. The results tend to be the same so I change the rules to make surviving a win and being able to write about it a big win.
It doesn't seem likely but someone could give me the help I need tomorrow. There could be a medical breakthrough or someone in the homeowners' association could decide that we need curbside service and a parking lot. The point is to live through today because tomorrow is always different.
There are a few reasons why I never write about money here. One of them is the relatively good luck we've enjoyed over the last two year period. I'm broke at the moment beyond a small amount of savings that will go to medical stuff but the good news is that this condition will last a total of three days. In the bad old days, I can remember six month periods where we had to ration everything to make it two weeks so that we could resupply for two more weeks of tight rationing. That's not the case here. The only reason I noticed this hiccup is because I tried to pay the annual sewer bill and my check of the bank balance revealed that I couldn't. The bill is due Monday and we get paid on Friday by direct deposit so this is no crisis.
Another reason why I don't write about money is that money woes have such a simple solution. One of you kind souls could help me out and I can't even finish that sentence. We're all in the same boat here and a lot of us take on water from time to time. I won't ask you to prioritize my needs right there beside your own. That sort of request leads to the guilt I feel whenever one of the many charities or political organizations I'd like to support gives me a call. As for a random internet person with unmet needs, that has its own dangers. You just have to remember good old what's her name. You remember the brave girl who wrote about her struggles on the 'net and received gifts galore. If you don't remember her the way I don't remember her, there's a good reason for it. She never existed. An adult woman with no kids wanted attention and started writing in this persona of this brave girl. People sent her gifts for the daughter totaling thousands or tens of thousands of dollars. I can't remember which it was but it was all fraud. When people wanted to meet the brave daughter, she succumbed to whatever disease she supposedly had.The FBI closed in but I don't remember what happened to her. I'm real, I have limits and I have to live up to those limits.
One good example is pain control. I hurt a lot and I hurt all the time. If I had my way, I would spend more than the annual budget for the state of Delaware (I live here. I'm not picking on my home state.) on various methods of pain control and distractions to help me ignore the pain. It's a bottomless need and I'm not proud of that but I live according to my limits and not these wants or needs. There may come a time when I screw something up badly enough that I must ask friends and family for help but I'm trying to avoid that. It's the sorta card that you can only play once so it had better be life or death when you do.
Okay. That was a bit stern of me. If you are me, it had better be life or death if I play the, "help me because I'm sick" card. If you are someone else like everyone else in the world, you can set your own limits. I assure you that I don't wait for matters to reach the life or death plateau before I try to get help for my beloved but I also don't attempt general fundraising with her needs either. She has her own support group of very good people like I do but there are two differences. The first is that she's my beloved and, as such, the most important person in the world. Secondly, she doesn't have the combination of bottomless need and learned helplessness that I get from being in my 15th year of chronic pain.
In truth, I will never turn down an offer of help freely given except perhaps as an attempt to be polite. There is just so much need and so few resources to meet it. I live in a neighborhood with a dumpster instead of curbside trash pickup. This comes from privatization of such services. Private companies like "one size fits all" solutions except when dealing with those rich enough to afford personal service. In absolute terms, things could be much worse. Some people in this neighborhood live half a mile from the dumpster as the crow flies. I cannot walk out to the dumpster from where I am so I guess the additional distance wouldn't matter but someone always tells me that things could be worse when I complain. Umm...duh! Things can always be worse. That said, I lack the resources to get the trash I produce to the dumpster on a regular basis. If I had enough resources, there would be a way to deal with the problem. I do not and such is life. Sometimes, this leads to what you might call Third World conditions here. If people were to link this problem to me where I live, the response would not be help. I figure that someone would try to fine me.
Money is the elephant in the room because I could never have enough so there's no point in complaining about it. I suppose my entire life is based on a pain control model. My doctors can't take all my pain away without killing me so I take what I can get and work on ignoring the rest. I can't deal with the problems in my life in a satisfactory matter so I lower my expectations. I woke up early today in pain because it was raining overnight. I'll be in pain later because it's raining or because a change in barometric pressure will force the rain away. The results tend to be the same so I change the rules to make surviving a win and being able to write about it a big win.
It doesn't seem likely but someone could give me the help I need tomorrow. There could be a medical breakthrough or someone in the homeowners' association could decide that we need curbside service and a parking lot. The point is to live through today because tomorrow is always different.
Sunday, March 30, 2014
Blissful, Glorious Sleep
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.
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.
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.
Subscribe to:
Posts (Atom)