You know the old expression "like someone pulled the rug out from under you?" I was feeling buoyant and full of excitement. The WMMR Campout for Hunger is this week and I promised myself that I would go with the donations we have gathered at various sales all year. We were going to go at a good time when stuff was going on and it was going to be fun in the service of a good cause. Unlike last year, we wouldn't go at the last minute.
Even at the last minute, something funny happened to me last year. I was having trouble walking as usual but there were cables everywhere for all the equipment needed to run a radio station on the road. I had a particularly bad near fall and was held up by a nice gentleman who was very polite. Afterward, Melissa informed me that the guy was a member of the parody hair band, "Steel Panther." In their makeup, they pull off the whole "too arrogant to share oxygen with you" act to perfection. Out of character, they're a bunch of nice guys.
Tonight is the first of three State Line "Christmas Beer" tastings being held over about a week's time. I always enjoy the tastings but I find myself hesitant to go again. My medical costs have gone up again and I'm unsure if I want to spend the money. It doesn't help that the price is still listed as TBA on the site and that there's no list of beers. It's even more dangerous to note that the Belgian beer sale is still going on. I want to sip Belgian ale at home. The second tasting features a special guest who is apparently pretty famous in the area beer scene but I've never heard of him personally. That price is also TBA and there's no listing. Do I really want to go there and risk having to listen to some spiel from a famous guy telling us his story? That night is a benefit for the UD Ice Skating Team and I despise ice skating for personal reasons. The third tasting looks like the best one because it benefits "Toys for Tots" and admission is an unwrapped toy or $12 each plus the glass fee. With Melissa working in a toy department, we could do something nice for the kids and get in for less than the standard cost.
Will I be able to go to the campout and have energy left to enjoy the tasting? Somehow, I suspect I'd find a way even if it cost me days of pain. I'm not ready for days of pain again. In fact, I find myself thinking about staying home and saving the money for emergencies. I'm stressing about too many things right now. Up until yesterday, I was doing pretty well with the coming down and relaxing bit. Now there are too many expensive choices staring me in the face.
The result is that someone yanked the rug out from under my buoyant mood. The food needs to get to the Campout because it won't do any good sitting in Melissa's car or the garage. I wish I could get my buoyant mood back but I feel helpless right now.
My pain doc's office called me yesterday while I was asleep to schedule what is likely a pointless appointment. I woke up just long enough to remember the time and the day. I just didn't remember what week it was, of course. The two dates that sound right would both be on the right day of the week. I put a call in and have gotten several calls back. The first was an automated call promising to lower my credit card interest rate because I've made several payments on time. Nice try, putzes. I don't have a credit card! The second call was a hang up. The third call back was from the Executive Putz in charge of the NRA. He is still claiming that the government is going to come for my guns. Well, I haven't worked out in a long time but my wimpy biceps are the closest I come to having guns. Even better, he's lying about the government trying to undo the Second Amendment. I wish he were right!
Pippi chose this call to jump up on my leg, lose her balance and shred me while falling. She left at least two nice long scratches which sting like hell. In case you haven't noticed, the pain doc's office was not among these calls and it's going on four hours of waiting! I haven't decided how much longer I can wait before the bathroom will be too much of a priority. That's not even counting the fact that I got under two hours of sleep to get up and make this call. Okay. My second call was as useless as my first.
My mood has been torpedoed again. The ship is going down. Hopefully, there aren't any sharks in this water.
Thursday, November 29, 2012
Tuesday, November 27, 2012
PDD: November 2012
Yesterday was pain doc day once again. I ended up using full scale honesty just as I knew I would. My pain doc is excellent whether I'm talking about the boss in charge of the practice, my regular monthly doctor or a former regular whom I still see occasionally. My favorite is my regular monthly doctor at the moment. She always takes me seriously which encourages me to be fully honest. There's more than one angle to look at everything.
I'm able to bring up the psychological angle to the pain without fear of her accusing me of being crazy. There are others at the same practice with whom I might not wish to talk about anxiety. My stress levels have been through the roof especially if you consider both eustress and distress. I was able to tell her that I'm having trouble keeping my head above water right now. There is something called a feedback loop that gives me a lot of trouble. If I'm feeling negative, I will see negative results that will make me feel more negative and so on. That one's easy to explain. The positive feedback loop is just as problematic for me right now. I skip rest to finish one more thought on a story project. That accomplishment feels good so I keep going. Then, I either make myself too sick to put in that hour a day or so that I can handle on a regular basis or I finish the draft. That leaves me on the ragged edge of withdrawal from a natural high.
We decided that what I need to do now is rest. I need to come down from the stress. There are a couple of State Line tastings coming up which would help me come down a lot. I tend to leave those feeling rather relaxed. The key to rest for me is avoiding things that get me keyed up but avoiding boredom most of all. We all know that there's nothing to do but hurt when you're bored
You can follow all of my online writing by following my Twitter account @John_Stapleford . I find Twitter a little weird but I made my peace with it by limiting my tweets to links.
I'm able to bring up the psychological angle to the pain without fear of her accusing me of being crazy. There are others at the same practice with whom I might not wish to talk about anxiety. My stress levels have been through the roof especially if you consider both eustress and distress. I was able to tell her that I'm having trouble keeping my head above water right now. There is something called a feedback loop that gives me a lot of trouble. If I'm feeling negative, I will see negative results that will make me feel more negative and so on. That one's easy to explain. The positive feedback loop is just as problematic for me right now. I skip rest to finish one more thought on a story project. That accomplishment feels good so I keep going. Then, I either make myself too sick to put in that hour a day or so that I can handle on a regular basis or I finish the draft. That leaves me on the ragged edge of withdrawal from a natural high.
We decided that what I need to do now is rest. I need to come down from the stress. There are a couple of State Line tastings coming up which would help me come down a lot. I tend to leave those feeling rather relaxed. The key to rest for me is avoiding things that get me keyed up but avoiding boredom most of all. We all know that there's nothing to do but hurt when you're bored
You can follow all of my online writing by following my Twitter account @John_Stapleford . I find Twitter a little weird but I made my peace with it by limiting my tweets to links.
Monday, November 26, 2012
Panic Attacks Are Fun
I was just getting a few things ready for pain doc day. I just needed to figure out what meds I was going to need first and then fill out the form for the pain doc. I was just standing there and realized that I needed my organizer to make my list which was on the other side of the room. In less than a minute, my heart was pounding and I was out of breath. I needed to sit down and did.
That's when it started taking everything I had not to explode. I wanted to scream because my two year calendar page ripped out of my organizer along with the straight edge while it was closed. My hands were shaking too badly to fit the straight edge onto the three rings of the binder. I was sitting there aware that I needed to write down my list of everything I needed re-prescribed but I couldn't remember how to say or spell any of my medicines. All I could remember was a concept of what each one did. Melissa nearly got her head bitten off because she decided to start getting ready for bed and had her back turned every time I wanted her to look at something. I'm still angry about that.
I knew I was having a panic/anxiety attack but it didn't matter. (There is a difference between the two but I can't remember what it is or mange to care.) The attack had me and there was no fighting it off. Even now, I cannot feel my lips. I need to replace my pain patch but I discovered a couple of sore spots on my ankles. It's been a few years but a sore spot on my ankle sent me to the hospital for a horrible experience. That's when I was outed as a diabetic to the medical system as a whole and when I lost all remaining respect for hospitals. They treated me like I was either harmlessly insane or hopelessly slow. Maybe this was triggered by my horror of ever going back.
In the midst of this panic attack, I need to remember that no one is sending me to the hospital. Of course, the pain doc appointment could change that conceivably but I have my main weapon. I have my ability to say the word, "no," as long as I can remain conscious. Moments like these make me consider the idea of isolating myself from the medical system as a whole. If entire religions can do it, so can I. Of course, I can't do that and take extensive pain medication so the idea remains rejected. I need to keep my uneasy peace with the system as a whole.
That's when it started taking everything I had not to explode. I wanted to scream because my two year calendar page ripped out of my organizer along with the straight edge while it was closed. My hands were shaking too badly to fit the straight edge onto the three rings of the binder. I was sitting there aware that I needed to write down my list of everything I needed re-prescribed but I couldn't remember how to say or spell any of my medicines. All I could remember was a concept of what each one did. Melissa nearly got her head bitten off because she decided to start getting ready for bed and had her back turned every time I wanted her to look at something. I'm still angry about that.
I knew I was having a panic/anxiety attack but it didn't matter. (There is a difference between the two but I can't remember what it is or mange to care.) The attack had me and there was no fighting it off. Even now, I cannot feel my lips. I need to replace my pain patch but I discovered a couple of sore spots on my ankles. It's been a few years but a sore spot on my ankle sent me to the hospital for a horrible experience. That's when I was outed as a diabetic to the medical system as a whole and when I lost all remaining respect for hospitals. They treated me like I was either harmlessly insane or hopelessly slow. Maybe this was triggered by my horror of ever going back.
In the midst of this panic attack, I need to remember that no one is sending me to the hospital. Of course, the pain doc appointment could change that conceivably but I have my main weapon. I have my ability to say the word, "no," as long as I can remain conscious. Moments like these make me consider the idea of isolating myself from the medical system as a whole. If entire religions can do it, so can I. Of course, I can't do that and take extensive pain medication so the idea remains rejected. I need to keep my uneasy peace with the system as a whole.
Friday, November 23, 2012
Whole New Levels
Maybe I got cocky. Somewhere along the line, I must have said this pain thing is no big deal. I can handle it. Maybe I got too frustrated with the state of certain affairs in my life, piled a few too many things on my back and decided I'd pay the price later. That's all guess work and I probably never will know for sure. There's a whole new level of pain and suffering that I didn't suspect existed. "Star Wars" quotes keep coming to mind. "What a lovely new smell you've discovered!" I would just rewrite it as "what lovely new agony you've discovered!"
It's just a few days before a pain doc appointment and I spent a day screaming unabashedly. Melissa thinks it's a combination of heavy stress and too much physical activity. That tells you nothing about the situation because I made a decision to keep this blog noncontroversial. One major source of stress in my life is a lifetime of controversial situations that cause me to make mountains out of mole hills seemingly at random. I find myself raging about everything except the thing that's really bothering me. Well, I've made some emotional breakthroughs so now I rage about that stuff too.
Well, I'm not here to write about emotional pain. I re-learned the fact that everything can hurt at once yesterday. The headache can merge with the arm pain somewhere in the shoulder or neck. The arm pain can lead me to seek comfortable positions that could lead to the back pain naturally yet it could also just be the screwed up signals from my brain. My legs might have hurt from crawling up the stairs because I was so certain that I'd fall. The foot pain could be straight from the pain or from the lovely ways my feet get tangled up in falls.
It's almost impossible to escape writing about the lifetime of emotional pain here. Any sensible person who doesn't make a living as a cowboy or something else that physical with such poor benefits, would have stayed in bed today. They would have insisted that getting more than two hours of sleep should be the priority. I'm not sensible once I've been triggered. The pull of "get to work you lazy ass" is even stronger. I should be able to laugh at memories of being told that I have no tolerance for pain and need to toughen up. Instead, I keep telling myself "it doesn't hurt that bad" and "you can get something done before the pain shows up. I feel these things with yesterday's agony fresh in my mind and I think I should be able to prosecute the person who put those ideas in my brain.
That's where the controversy would come into play. Days like yesterday and the night before represent a different reality from the one where I get told that it just has to get done (for many definitions of it) and that's final. There is no way to reconcile those differences. I'm not a hoarder. I'm someone who never has days that are good enough to walk out to the dumpster without severe consequences. On my bad days, I have trouble making it to the bathroom. Writing that cost me some dignity, of course, but dignity ends up being cheap. The sort of help I need is hideously expensive.
That lifetime of emotional pain wants me to declare myself to be a wastrel. The fact is that pain control is as exempt from my usual penny pinching as I can make it. Yesterday, someone who was trying to be mean (for good reason) told me very clearly that a sensible person could see me as a wastrel with my priorities too screwed up. I had started it by being just as mean if not meaner. With that memory clear in my head, I can't remember the second part to my brilliant argument. All I can think is that I had better get my lazy ass to work and earn my oxygen for the day.
There is still part of me that considers myself a genius at coping. At least I can reconcile that reality with the one I'm experiencing now. If get the job done, I might be more comfortable later while I'm screaming in agony. It's coming. I can feel a normal day's headache already there.
It's just a few days before a pain doc appointment and I spent a day screaming unabashedly. Melissa thinks it's a combination of heavy stress and too much physical activity. That tells you nothing about the situation because I made a decision to keep this blog noncontroversial. One major source of stress in my life is a lifetime of controversial situations that cause me to make mountains out of mole hills seemingly at random. I find myself raging about everything except the thing that's really bothering me. Well, I've made some emotional breakthroughs so now I rage about that stuff too.
Well, I'm not here to write about emotional pain. I re-learned the fact that everything can hurt at once yesterday. The headache can merge with the arm pain somewhere in the shoulder or neck. The arm pain can lead me to seek comfortable positions that could lead to the back pain naturally yet it could also just be the screwed up signals from my brain. My legs might have hurt from crawling up the stairs because I was so certain that I'd fall. The foot pain could be straight from the pain or from the lovely ways my feet get tangled up in falls.
It's almost impossible to escape writing about the lifetime of emotional pain here. Any sensible person who doesn't make a living as a cowboy or something else that physical with such poor benefits, would have stayed in bed today. They would have insisted that getting more than two hours of sleep should be the priority. I'm not sensible once I've been triggered. The pull of "get to work you lazy ass" is even stronger. I should be able to laugh at memories of being told that I have no tolerance for pain and need to toughen up. Instead, I keep telling myself "it doesn't hurt that bad" and "you can get something done before the pain shows up. I feel these things with yesterday's agony fresh in my mind and I think I should be able to prosecute the person who put those ideas in my brain.
That's where the controversy would come into play. Days like yesterday and the night before represent a different reality from the one where I get told that it just has to get done (for many definitions of it) and that's final. There is no way to reconcile those differences. I'm not a hoarder. I'm someone who never has days that are good enough to walk out to the dumpster without severe consequences. On my bad days, I have trouble making it to the bathroom. Writing that cost me some dignity, of course, but dignity ends up being cheap. The sort of help I need is hideously expensive.
That lifetime of emotional pain wants me to declare myself to be a wastrel. The fact is that pain control is as exempt from my usual penny pinching as I can make it. Yesterday, someone who was trying to be mean (for good reason) told me very clearly that a sensible person could see me as a wastrel with my priorities too screwed up. I had started it by being just as mean if not meaner. With that memory clear in my head, I can't remember the second part to my brilliant argument. All I can think is that I had better get my lazy ass to work and earn my oxygen for the day.
There is still part of me that considers myself a genius at coping. At least I can reconcile that reality with the one I'm experiencing now. If get the job done, I might be more comfortable later while I'm screaming in agony. It's coming. I can feel a normal day's headache already there.
Tuesday, November 20, 2012
The Ragged Edge
I'm back on the ragged edge of coming down from a high. I found myself driven and finished the first draft of "Angel" and had to kick it to the curb. If I didn't separate myself from it, I would have kept adding scenes here and there without ever finishing a draft. Now, I have a first draft that is appropriately bad. I can wait a few days then look it over to decide what needs to be done with it next. Chances are that certain characters will need to be strengthened and others will have to be removed. It's too soon to think of that because I still like them all.
Any serious concentration means more intense pain. It's a fact of life and the fact that I love writing makes the pain more worth it. It doesn't take away the pain or the need for breaks. When I'm winding down a project, I do tend to lose the ability to rest. I keep thinking that just one more whatever will finish the job. Of course, my disability is too powerful to fight head on like that. If I can't make myself sleep, I can lie down for an hour listening to music. I can re-read something that inspired what I'm doing. Usually, I feel a bit refreshed after an hour and I'm ready to go again.
So, I kicked the "Angel" project to the curb without cab fare to complete the metaphor. You'd have thought I actually did it with the way I felt. I wanted to re-read it just one more time to check this or that potential problem but it's too early. I can't see the problems now. I still see what I meant to write. I slept about three days straight and thought I was free. That's when the trailing edge of that momentum caught me. I was impressed by some housework that Melissa did. (I want to use one of my expressions. She banged it out. She pounded it in. She nailed it and wrestled it into submission. I just don't want to embarrass her so I banged out the first draft and she simply "did" the housework.) She made a hole in the clutter.
Honestly, I think I'm afflicted with something called "clutter blindness" that truly does exist. Part of it is being realistic about Chiari pain but just as much is this blindness. As long as the clutter stays out of my designated areas that I want clutter free, it doesn't exist. There could be a pile of papers as tall as I am (but there isn't and there never has been) and I won't notice it unless it encroaches onto my territory. My cats drive me nuts at times because it seems to me that they generate absurd amounts of clutter. The truth is that they generate small amounts of clutter that extend into my "clean" zones. Worse, my girls cause clutter to make noise. I can ignore it if it just sits there and I do. When Maddie rammed a trash can in my office at full speed just now, it made noise and I saw it was over flowing. Therefore, I'm going to deal with it right now.
That was a classic case. I came up here to write a cautionary tale of exhaustion but the ragged edge pulled me back in. There's no point in looking at "Angel" again so I'm working on a story that started as a simple exercise in describing someone. Since the entire thing started with a description of a high school girl I decided to name Dominique, I had to make the story be about someone else. One thing pulls me to the next until I collapse from exhaustion and sleep for three days.
It's a mindless state to be in. Toward the end, I'll be desperate to sleep but virtually mainlining caffeine to keep at it. I suppose that I should go meditate or something. It used to help me come down. I'm just afraid of the pain that's waiting for me "down there." I can feel it now despite the adrenaline masking it so I know it will be bad.
I want to be awake for when Melissa comes home so I can present my take on her plan to get us a new dishwasher. It involves saving a small amount in numbers of dollars but a much larger percentage by changing how we acquire comfort food. If I'm not careful, I'll present a desperate request for comfort food from a raving maniac in pain. Must make myself presentable for when she comes home."
Any serious concentration means more intense pain. It's a fact of life and the fact that I love writing makes the pain more worth it. It doesn't take away the pain or the need for breaks. When I'm winding down a project, I do tend to lose the ability to rest. I keep thinking that just one more whatever will finish the job. Of course, my disability is too powerful to fight head on like that. If I can't make myself sleep, I can lie down for an hour listening to music. I can re-read something that inspired what I'm doing. Usually, I feel a bit refreshed after an hour and I'm ready to go again.
So, I kicked the "Angel" project to the curb without cab fare to complete the metaphor. You'd have thought I actually did it with the way I felt. I wanted to re-read it just one more time to check this or that potential problem but it's too early. I can't see the problems now. I still see what I meant to write. I slept about three days straight and thought I was free. That's when the trailing edge of that momentum caught me. I was impressed by some housework that Melissa did. (I want to use one of my expressions. She banged it out. She pounded it in. She nailed it and wrestled it into submission. I just don't want to embarrass her so I banged out the first draft and she simply "did" the housework.) She made a hole in the clutter.
Honestly, I think I'm afflicted with something called "clutter blindness" that truly does exist. Part of it is being realistic about Chiari pain but just as much is this blindness. As long as the clutter stays out of my designated areas that I want clutter free, it doesn't exist. There could be a pile of papers as tall as I am (but there isn't and there never has been) and I won't notice it unless it encroaches onto my territory. My cats drive me nuts at times because it seems to me that they generate absurd amounts of clutter. The truth is that they generate small amounts of clutter that extend into my "clean" zones. Worse, my girls cause clutter to make noise. I can ignore it if it just sits there and I do. When Maddie rammed a trash can in my office at full speed just now, it made noise and I saw it was over flowing. Therefore, I'm going to deal with it right now.
That was a classic case. I came up here to write a cautionary tale of exhaustion but the ragged edge pulled me back in. There's no point in looking at "Angel" again so I'm working on a story that started as a simple exercise in describing someone. Since the entire thing started with a description of a high school girl I decided to name Dominique, I had to make the story be about someone else. One thing pulls me to the next until I collapse from exhaustion and sleep for three days.
It's a mindless state to be in. Toward the end, I'll be desperate to sleep but virtually mainlining caffeine to keep at it. I suppose that I should go meditate or something. It used to help me come down. I'm just afraid of the pain that's waiting for me "down there." I can feel it now despite the adrenaline masking it so I know it will be bad.
I want to be awake for when Melissa comes home so I can present my take on her plan to get us a new dishwasher. It involves saving a small amount in numbers of dollars but a much larger percentage by changing how we acquire comfort food. If I'm not careful, I'll present a desperate request for comfort food from a raving maniac in pain. Must make myself presentable for when she comes home."
Sunday, November 18, 2012
What A Night!
State Line Liquors has been my favorite place to buy beer nearly since I was legal. Around here in Northern Delaware, they are known as the place that's open on Sundays. Delaware has Blue Laws still in effect banning bars and liquor stores (the law reads something like places that gain most of their profit from the sale of alcohol) from being open on Sundays. People have tried to change this law only to be stopped by the liquor store owners who don't want to pay employees an extra day. (That's sort of an unofficial law in Delaware. Find ways not to pay your employees!) I know that some of you are from pretty far away so I should mention that liquor stores are the only places that sell beer in the state of Delaware. You can't go into a convenience store or supermarket and buy beer. Restaurants do sell alcohol and they can remain open on Sunday. The shocked looks on the faces of people from far away used to be one of my rare pleasures as a convenience store clerk. "You don't sell beer here?"
This post isn't about Blue Laws or where you can or can't buy beer. I've lived in Delaware my whole life so I'm more surprised that things are different elsewhere. I just learned about State Line because that's where the entire University of Delaware gets its Sunday beer and that's my alma mater. They don't get a link because they aren't a place I'm recommending to the disabled.
I've written about tastings before but never cited the store. (I should probably get permission to do so but I'll just give my standard offer to take down the post instead.) I learned that drinking helps pain and it has no long term ill effects if you do it in moderation. On tasting nights, State Line will let you pay a tasting fee that has been as low as $10 and as high as $15 for which you can drink sample glasses of high quality and rare beers for the two hour session. They even provide glasses for a refundable $2 deposit.
Tonight was a particularly nice night because I can't stand for two hours so I have left early because my legs were worn out every previous night. Tonight, I mentioned my problem and they presented me with a chair before I could even ask. It was Belgian Ales night so I knew the lines would be horrendous for my Belgians. So, my friends, don't let your disabilities get in the way. If you can't stand, ask for a chair. The fine people at State Line weren't required to provide me with a chair because I'm not required to be there. They did it because they are good people. I see no reason to go to another store ever unless I'm several hundred miles away when I decide to drink. Even then, I decided to shop at State Line before my vacation because of the selection and because I just like the people.
My post election attempt at coming down succeeded and so I slept away about three full days there. I followed that with extensive work on the first draft of another novel project. I finished that draft after two all-nighters in one week. The insomnia is at its worst when I'm doing well on a project. Since then, I lost about three days and had a day when I couldn't sleep at all from pain and the desire to sleep at night. After sleeping most of last night, I slept until 5 PM.
At that point, I was lying in bed feeling miserable and in pain. Wouldn't it just be better to skip the tasting since I knew it would be crowded and I wouldn't be able to stand that long? No. It wouldn't have been better and Melissa played coach again today. She started getting ready to go out before I did. In addition to being delicious, these beer tastings are my major social activity not involving doctors. Where else can you go to dicuss the relative tastiness of hoppy beer versus malty beer in person?
Once I started moving, I felt better and then they let me use the chair. It was a small thing but that's all most of us pain sufferers ask for. Do the small things for us and we'll heft the pain around. Thanks, guys. Now, which tasting will we attend next?
This post isn't about Blue Laws or where you can or can't buy beer. I've lived in Delaware my whole life so I'm more surprised that things are different elsewhere. I just learned about State Line because that's where the entire University of Delaware gets its Sunday beer and that's my alma mater. They don't get a link because they aren't a place I'm recommending to the disabled.
I've written about tastings before but never cited the store. (I should probably get permission to do so but I'll just give my standard offer to take down the post instead.) I learned that drinking helps pain and it has no long term ill effects if you do it in moderation. On tasting nights, State Line will let you pay a tasting fee that has been as low as $10 and as high as $15 for which you can drink sample glasses of high quality and rare beers for the two hour session. They even provide glasses for a refundable $2 deposit.
Tonight was a particularly nice night because I can't stand for two hours so I have left early because my legs were worn out every previous night. Tonight, I mentioned my problem and they presented me with a chair before I could even ask. It was Belgian Ales night so I knew the lines would be horrendous for my Belgians. So, my friends, don't let your disabilities get in the way. If you can't stand, ask for a chair. The fine people at State Line weren't required to provide me with a chair because I'm not required to be there. They did it because they are good people. I see no reason to go to another store ever unless I'm several hundred miles away when I decide to drink. Even then, I decided to shop at State Line before my vacation because of the selection and because I just like the people.
My post election attempt at coming down succeeded and so I slept away about three full days there. I followed that with extensive work on the first draft of another novel project. I finished that draft after two all-nighters in one week. The insomnia is at its worst when I'm doing well on a project. Since then, I lost about three days and had a day when I couldn't sleep at all from pain and the desire to sleep at night. After sleeping most of last night, I slept until 5 PM.
At that point, I was lying in bed feeling miserable and in pain. Wouldn't it just be better to skip the tasting since I knew it would be crowded and I wouldn't be able to stand that long? No. It wouldn't have been better and Melissa played coach again today. She started getting ready to go out before I did. In addition to being delicious, these beer tastings are my major social activity not involving doctors. Where else can you go to dicuss the relative tastiness of hoppy beer versus malty beer in person?
Once I started moving, I felt better and then they let me use the chair. It was a small thing but that's all most of us pain sufferers ask for. Do the small things for us and we'll heft the pain around. Thanks, guys. Now, which tasting will we attend next?
Thursday, November 8, 2012
Still Coming Down
The only thing more difficult than sustaining a painful and exhausting offensive is stopping the train and finding some way to relax. I played a tiny part in a massive wave that stopped enemies of the chronic pain community from destroying Medicare and so much more. My efforts were but one grain of sand on a massive beach but the entire beach was made up of individuals doing their tiny parts to make the miracle happen.
Some grains were bigger than others. A guy named Eli (last name withheld on principle) never said a word about being more than just another volunteer. He took on extra responsibility but I figured it was just his turn or something. I didn't know that he was doing some big titled job for Representative John Carney. That didn't stop him from making it possible for me to help represent the disabled community along with many others. I knew he was our leader at the phone banks because of all the extra responsibilities he took on. He drove me home from the phone banks twice when I became hopelessly symptomatic. Why not? He was just the right hand man to a Member of the U.S. House of Representatives. I'm stunned.
I'm having a laugh because I tend to feel impostor syndrome when I find out I've been working with someone like that. I feel like a phony volunteer because I wasn't the best of us all. At this moment, the impostor syndrome is losing badly. I can't fathom that this effort was one iota less than what I was capable of doing when I'm on the verge of collapse more than 24 hours after it was over. I cannot deny the pride I feel at hearing my President thank his volunteers. I was a molecule of well made steel sharpened at the tip of Obama's ground game. Violent imagery doesn't apply here so I'm not taking that further except to say that I was one of the many.
Thankfully, quite a few hours have passed since the previous paragraph. I slept, I slept deepy and I slept for a good long time. It felt awfully good to wake up afterward and have some dinner with Melissa. That was a big step in coming down. Unfortunately, I nearly forgot the next big rule. The reason why I needed to come down was that I needed to rest a good while. It's too soon for major projects or long efforts writing. I'm still in an abnormal amount of pain so I'm going to logoff here.
Some grains were bigger than others. A guy named Eli (last name withheld on principle) never said a word about being more than just another volunteer. He took on extra responsibility but I figured it was just his turn or something. I didn't know that he was doing some big titled job for Representative John Carney. That didn't stop him from making it possible for me to help represent the disabled community along with many others. I knew he was our leader at the phone banks because of all the extra responsibilities he took on. He drove me home from the phone banks twice when I became hopelessly symptomatic. Why not? He was just the right hand man to a Member of the U.S. House of Representatives. I'm stunned.
I'm having a laugh because I tend to feel impostor syndrome when I find out I've been working with someone like that. I feel like a phony volunteer because I wasn't the best of us all. At this moment, the impostor syndrome is losing badly. I can't fathom that this effort was one iota less than what I was capable of doing when I'm on the verge of collapse more than 24 hours after it was over. I cannot deny the pride I feel at hearing my President thank his volunteers. I was a molecule of well made steel sharpened at the tip of Obama's ground game. Violent imagery doesn't apply here so I'm not taking that further except to say that I was one of the many.
Thankfully, quite a few hours have passed since the previous paragraph. I slept, I slept deepy and I slept for a good long time. It felt awfully good to wake up afterward and have some dinner with Melissa. That was a big step in coming down. Unfortunately, I nearly forgot the next big rule. The reason why I needed to come down was that I needed to rest a good while. It's too soon for major projects or long efforts writing. I'm still in an abnormal amount of pain so I'm going to logoff here.
Wednesday, November 7, 2012
Coming Down
It's almost a blur. There were three days of excrutiating pain during Hurricane Sandy. Next, we had a pain doc appointment that moved on to the DMV the same day. That was killer. Finally, we had my terror of Republican policies and my need to be relevant combine to force me into three straight days of volunteering to get out the vote on the phones. That all blends into one mass memory of pain. Well, pain and working with like minded people toward a common goal.
It all culminated last night in a moment (before the big moment) when I thought I would pass out. I was crowded into a theater with a few thousand of my closest friends. (Some of them recognized me but that's the uniform. I walk around with long unkept hair, a beard that seems curlier every day, slippers to help remind people how badly I walk if the cane isn't enough and then there's my "overshirt" worn to keep my arms extra warm and sweaty to cut down on RLS/fibromyalgia pain. I call it my disabily uniform.) In any case, a very large gentleman came up right behind me screaming obscenities at the stage where the state party chairman was giving a bad and boring speech. He was screaming these right over my shoulder which was painful and he was looking like someone who wanted to incite a riot. For both reasons, I tuned up my reasonable voice and asked him to stop because he was hurting me. To my shock, he stopped.
After this, a nice lady behind me who had managed to finagle a chair started asking someone to find a chair for me. The previous gentleman insisted on making up his outbursts to me by finding me a chair. Less than a minute later, I was seated happily.
I plan on writing about all these events in detail and getting back to writing fiction (like I ever stopped completely) but I need to rest first. These dream moments can turn into nightmares for those of us with chronic pain if we can't get the brakes to work. Another storm is on its way today so I really need to stop. It's time for some herbal tea and Pearl Jam music.
It all culminated last night in a moment (before the big moment) when I thought I would pass out. I was crowded into a theater with a few thousand of my closest friends. (Some of them recognized me but that's the uniform. I walk around with long unkept hair, a beard that seems curlier every day, slippers to help remind people how badly I walk if the cane isn't enough and then there's my "overshirt" worn to keep my arms extra warm and sweaty to cut down on RLS/fibromyalgia pain. I call it my disabily uniform.) In any case, a very large gentleman came up right behind me screaming obscenities at the stage where the state party chairman was giving a bad and boring speech. He was screaming these right over my shoulder which was painful and he was looking like someone who wanted to incite a riot. For both reasons, I tuned up my reasonable voice and asked him to stop because he was hurting me. To my shock, he stopped.
After this, a nice lady behind me who had managed to finagle a chair started asking someone to find a chair for me. The previous gentleman insisted on making up his outbursts to me by finding me a chair. Less than a minute later, I was seated happily.
I plan on writing about all these events in detail and getting back to writing fiction (like I ever stopped completely) but I need to rest first. These dream moments can turn into nightmares for those of us with chronic pain if we can't get the brakes to work. Another storm is on its way today so I really need to stop. It's time for some herbal tea and Pearl Jam music.
Thursday, November 1, 2012
The Third Day and the Bad News
After surviving the day before Hurricane Sandy brushed us here in New Castle County and the day of the storm, I thought I was done with the agony for a little while. Tuesday ended up being nearly as bad as Monday. On Monday, I gave up all pretenses of being brave and had a cup of herbal tea or a glass with some amaretto in it most of the day. It was best when I was nearly ready to fall asleep. Unfortunately, there are things worse than pain out there.
Remember my sickie buddy? After appearing to be out of the woods, Melissa's Aunt Lois was diagnosed with cancer again. After her heart attack, she cannot handle chemotherapy so the doctors told her that the cancer would probably kill her. My distraught mother-in-law didn't know any details like what stage the cancer was in. All I know is that surrender is out of the question. If I can handle day after day of agony, she can contact one of the national centers of excellence for cancer.
She needs faith that none of her family will abandon her in this fight, faith in her husband to be there for her, her faith in God that she has demonstrated and faith in the medical science that advances every day. She needs goals like contacting a treatment center and doing the things they tell her to do. She needs rewards but I don't know what exactly she likes to do. It's the trinity of survival and I plan to tell her about it when I can. I can be her substitute coach until her husband is ready if necessary. I think he'll do just fine without my help.
At some point, I was so exhausted by Monday's pain that I fell asleep at night. When I woke up on Tuesday, things seemed just fine like they had Monday morning. By Tuesday afternoon, I was ready to cry real tears from the pain alone. I was doing everything I could just to keep pace with the pain. Eventually, I slept like the dead if you'll excuse the expression only to wake up and face Wednesday.
Wednesday is another story for another day.
Remember my sickie buddy? After appearing to be out of the woods, Melissa's Aunt Lois was diagnosed with cancer again. After her heart attack, she cannot handle chemotherapy so the doctors told her that the cancer would probably kill her. My distraught mother-in-law didn't know any details like what stage the cancer was in. All I know is that surrender is out of the question. If I can handle day after day of agony, she can contact one of the national centers of excellence for cancer.
She needs faith that none of her family will abandon her in this fight, faith in her husband to be there for her, her faith in God that she has demonstrated and faith in the medical science that advances every day. She needs goals like contacting a treatment center and doing the things they tell her to do. She needs rewards but I don't know what exactly she likes to do. It's the trinity of survival and I plan to tell her about it when I can. I can be her substitute coach until her husband is ready if necessary. I think he'll do just fine without my help.
At some point, I was so exhausted by Monday's pain that I fell asleep at night. When I woke up on Tuesday, things seemed just fine like they had Monday morning. By Tuesday afternoon, I was ready to cry real tears from the pain alone. I was doing everything I could just to keep pace with the pain. Eventually, I slept like the dead if you'll excuse the expression only to wake up and face Wednesday.
Wednesday is another story for another day.
Subscribe to:
Posts (Atom)