Sunday, April 27, 2014

The Post Extreme Pain Hangover

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.

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.

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.