It was a version of the same nightmare I've had since the fourth grade yet it was brutal in its own way. I can barely function here at home by myself and I'm by myself at least half the time. I sit very still so that no one will know that I'm home. I don't even wait for an actual knock on the door before I fret these days. In the idiom of Pearl Jam's "Rearviewmirror," the shades are never raised. Neither parent made an appearance in this dream which might be the worst part. They sent a representative whom I met outside my front door. She had a terrible Asian accent that my damaged brain simply will not comprehend very well and she listed a series of demands from them that were horribly impractical for someone in my state.
The threat attached to the demands was the same it has always been in my nightmares about the parents with an extra twist. When I informed this representative that I would not answer the door and would call the cops at the first sign of either parent, she presented me with a document. It was simply an official demand that they leave me the hell alone. The threat of it being "in writing" was the same threat that I try to deal with by writing about this trauma here so often. I would be exposed as someone too easily hurt because everyone knows what wonderful people they are. In short, I'd be wearing a "Scarlet TS" for Terrible Son. I've been dealing with those consequences for the better part of a decade. I got rid of the poisonous relationships that left me wanting to die and, in the process, they took the rest of the family with them.
No matter what the settings may be, the dreams are always the same. I get to face their disapproval and condemnation with the added feeling that they never asked for much where a healthy person is concerned. Therefore, all the mostly healthy members of my family and their adult friends "know" that I could just try harder. After all, the current situation is unacceptable and unreasonable and I couldn't agree more. There's also no one damned thing that I can do about it. I live each day amid a collection of rocks and hard places while making the best of it.
The good news is that I don't have to beat down fantasies of killing myself anymore. As I suspected and, more than anything, hoped, removing myself from a bad situation was the closest I could find to a cure. As miserable as I feel mentally and physically, it's just a shadow of what they did to me on a regular basis. I will hurt, probably yell out in agony, sit absolutely still so that my grey kitty won't choose to abandon me. Instead, this little 10-12 pound cat will try to beat her dinner out of me. I'm only 41 and I'm frail enough to feel it.
Maybe that cup of coffee will help.
Sunday, November 22, 2015
Thursday, November 12, 2015
Different Types of Pain
I'm not going to bother being superstitious here and avoid mentioning a small break in my tooth pain. It will be back soon enough most likely as soon as I crack or break another tooth. Before my dental disasters, I was able to divide pain into two categories. Summer pain was sharp, concentrated in the back of my head and involved a jump from maybe a six on the pain scale to a ten plus if a storm came within half a continent of me. Thankfully, tea or beer and medicine was enough to help me deal with it and it would pass within a couple of hours of the storm's end. Call it short but sour.
Winter pain was arthritis and this other burning, aching pain that made no sense. Also, I had this lactic acid burn in my arms where I felt like I had flapped them to travel hundreds of miles. It was less intense than summer pain but I just didn't get a break from it. Over time, I went on medication to deal with the arthritis which is only a problem now when my hands are borderline suffering from frostbite if you could get that in the house. My burning ache that I feared was some sort of bone cancer originally turned out to be fibromyalgia and it has responded pretty well to medicine. The lactic acid burn in my arms was what I half jokingly call RAS which means Restless Leg Syndrome in the arms or Restless Arm Syndrome which I prefer. The medicine for that works best if I feel my arms swaddled in nice long sleeve flannel style shirts
As much as it seems otherwise, I don't just sit around complaining about my symptoms. Through trial and error or finding similarities, I find treatments for my symptoms. The teeth are different because they can keep me at a ten plus on the scale for days at a time. I would not be able to wish this on my metaphorical worst enemy and I've made up with all of my worst enemies from school days. I would forgive you for believing that any day without the worst of the tooth pain is heavenly by comparison. After all, that's the way it should be.
Overnight into this morning, my arms felt like someone was giving me electric shocks except not just short bursts of it. The electric pain is constant though it's dulled by this nice shirt that makes me sweat like (insert something funny) and probably smells less than funny. It just goes to show you that there are all sorts of pain, the pain you're in is always the worst pain
Some sleep would probably help me gain more ground.
Winter pain was arthritis and this other burning, aching pain that made no sense. Also, I had this lactic acid burn in my arms where I felt like I had flapped them to travel hundreds of miles. It was less intense than summer pain but I just didn't get a break from it. Over time, I went on medication to deal with the arthritis which is only a problem now when my hands are borderline suffering from frostbite if you could get that in the house. My burning ache that I feared was some sort of bone cancer originally turned out to be fibromyalgia and it has responded pretty well to medicine. The lactic acid burn in my arms was what I half jokingly call RAS which means Restless Leg Syndrome in the arms or Restless Arm Syndrome which I prefer. The medicine for that works best if I feel my arms swaddled in nice long sleeve flannel style shirts
As much as it seems otherwise, I don't just sit around complaining about my symptoms. Through trial and error or finding similarities, I find treatments for my symptoms. The teeth are different because they can keep me at a ten plus on the scale for days at a time. I would not be able to wish this on my metaphorical worst enemy and I've made up with all of my worst enemies from school days. I would forgive you for believing that any day without the worst of the tooth pain is heavenly by comparison. After all, that's the way it should be.
Overnight into this morning, my arms felt like someone was giving me electric shocks except not just short bursts of it. The electric pain is constant though it's dulled by this nice shirt that makes me sweat like (insert something funny) and probably smells less than funny. It just goes to show you that there are all sorts of pain, the pain you're in is always the worst pain
Some sleep would probably help me gain more ground.
Tuesday, November 3, 2015
Fall of the (Ability to Make Bad Puns)
I wanteed to start this post off with a bad pun about Fall in the title but my ironic sense of humor would jinx me if I made a pun about falling. Physical humor isn't my strongest suit right now and I'd rather not have to check off that box about falls with injuries at the pain doc. (Have you over the past year suffered one or more falls with injury? 2 or more falls without injury?) That's not the right quote but I always got the odd impression that they cared more about falls without injury than those with. It's either some highly advanced diagnostic tool or a typo that no one has caught yet.
If I were to make a typical bad joke, I'd have to say that Autumn fell on me with the usual ton of bricks. You would think that all the tooth pain would numb me to the more typical fibromyalgia/Chiari pain but it doesn't work that way. It's a different sort of pain (Thank God!) so practice coping with one does not assist against the other. I learned this in the latest installment of "John decides he's doing something terrible." Narcotic pain medication does not affect tooth pain at all. There is a biological/chemical reason for this that the experts understand and I know from experience. In fact, alcohol doesn't do much of a job against it either. Therefore, my only defense against tooth pain that has spiralled out of control is to sleep.
At one point, I confused one (or possibly several) of my doctors when I explained how pain helped me sleep. It's a rather indirect relationship but pain forced me to learn to relax my body and mind. Narcotics require a willing mind to get the job done even with the things they handle well. You can't fight to stay alert and get proper pain relief at the same time. Fighting to stay alert is something I learned too long ago to set aside easily but, when I manage to set it aside, I drop off to sleep way too easily. I go from insomniac to a layman's narcoleptic with the flip of a switch. It doesn't matter what I'm doing. I've fallen asleep eating way too many times and I'm glad I quit smoking going on 20 years ago. Has anyone else fallen asleep completely upright without falling over? I'm not even talking about sleepwalking. Ironically, the main instance of this that I can remember involved standing at a light switch that I had just flipped.
Learning to manage pain helped me learn to sleep so I've never had to check the box about pain depriving me of sleep. Well, this month's paperwork will be a first. I decided that I was drinking way too much and losing my pain tolerance. (Try growing up hearing that you're wimpy for not having any pain tolerance and then having to report chronic pain to a physician. The constant self examination wears me down.) I had asked for some beer for my birthday since I like the taste of it so much and my beloved bought me a 4-pack of really good and potent German beer. Since I was having a nice little vacation from the intense tooth pain, I decided that I didn't require whiskey for pain at all. Some beer would do nicely.
Well, a weather front of one variety or another came rushing through and that beer went fast. I was in screaming/howling agony overnight as Melissa sat up with me for quite a while trying to keep me calm or, at least, not frothing from the mouth. At one point, I could tell she was just as upset as I was when she joined me in wishing a liquor store could just open up. Well, we survived the night and I got my bottle. It lasted a couple of days at most because I was interested in being semi-conscious at most.
As with any total loss of pain control that I've had, there were a few days of what you might call aftershocks. At the same time, I was suffering from the usual muscle cramps, spasms, twitching, headaches, neck pain and that really big guy who was pummeling me with the kitchen sink. That's when I remembered the whole Fall thing. Changes in temperature are bad for me. The aftershocks may be over but I've learned a new rule. Running out of money and whiskey at the same time while in extreme pain is a bad thing. I should be able to get whiskey on my prescription drug plan and, yes, I'm happy with generic mixed with tap water. Well, I guess satisfied is more appropriate than happy.
Must remember to act early. Pain is easier to stop the lower it is on the pain scale. Also, must remember to rest this afternoon.
If I were to make a typical bad joke, I'd have to say that Autumn fell on me with the usual ton of bricks. You would think that all the tooth pain would numb me to the more typical fibromyalgia/Chiari pain but it doesn't work that way. It's a different sort of pain (Thank God!) so practice coping with one does not assist against the other. I learned this in the latest installment of "John decides he's doing something terrible." Narcotic pain medication does not affect tooth pain at all. There is a biological/chemical reason for this that the experts understand and I know from experience. In fact, alcohol doesn't do much of a job against it either. Therefore, my only defense against tooth pain that has spiralled out of control is to sleep.
At one point, I confused one (or possibly several) of my doctors when I explained how pain helped me sleep. It's a rather indirect relationship but pain forced me to learn to relax my body and mind. Narcotics require a willing mind to get the job done even with the things they handle well. You can't fight to stay alert and get proper pain relief at the same time. Fighting to stay alert is something I learned too long ago to set aside easily but, when I manage to set it aside, I drop off to sleep way too easily. I go from insomniac to a layman's narcoleptic with the flip of a switch. It doesn't matter what I'm doing. I've fallen asleep eating way too many times and I'm glad I quit smoking going on 20 years ago. Has anyone else fallen asleep completely upright without falling over? I'm not even talking about sleepwalking. Ironically, the main instance of this that I can remember involved standing at a light switch that I had just flipped.
Learning to manage pain helped me learn to sleep so I've never had to check the box about pain depriving me of sleep. Well, this month's paperwork will be a first. I decided that I was drinking way too much and losing my pain tolerance. (Try growing up hearing that you're wimpy for not having any pain tolerance and then having to report chronic pain to a physician. The constant self examination wears me down.) I had asked for some beer for my birthday since I like the taste of it so much and my beloved bought me a 4-pack of really good and potent German beer. Since I was having a nice little vacation from the intense tooth pain, I decided that I didn't require whiskey for pain at all. Some beer would do nicely.
Well, a weather front of one variety or another came rushing through and that beer went fast. I was in screaming/howling agony overnight as Melissa sat up with me for quite a while trying to keep me calm or, at least, not frothing from the mouth. At one point, I could tell she was just as upset as I was when she joined me in wishing a liquor store could just open up. Well, we survived the night and I got my bottle. It lasted a couple of days at most because I was interested in being semi-conscious at most.
As with any total loss of pain control that I've had, there were a few days of what you might call aftershocks. At the same time, I was suffering from the usual muscle cramps, spasms, twitching, headaches, neck pain and that really big guy who was pummeling me with the kitchen sink. That's when I remembered the whole Fall thing. Changes in temperature are bad for me. The aftershocks may be over but I've learned a new rule. Running out of money and whiskey at the same time while in extreme pain is a bad thing. I should be able to get whiskey on my prescription drug plan and, yes, I'm happy with generic mixed with tap water. Well, I guess satisfied is more appropriate than happy.
Must remember to act early. Pain is easier to stop the lower it is on the pain scale. Also, must remember to rest this afternoon.
Thursday, October 1, 2015
Defending Against Despair (Pain, Fear, Doughnuts and Coffee)
Life continues to spiral out of control to the point being closer to an amusement park ride than something with me behind the wheel. The wheel is mostly there for decoration and there are no brakes. I don't expect this condition of helplessness to last forever but, while it does, I need to enjoy what I can. After all, amusement park rides are fun for those of you without reconstructed skulls and necks. I have been in a productive writing period trying to describe what life in constant pain is like. For the longest time, I was afraid that I might answer the question of how I survive by downplaying the pain. I had a terror of someone saying that I was some con artist playing the system and living an ideal life no matter how unqualified they might be.
My parents made such accusations but hardly ever explicitly. A pair of losers once wrote me emails explaining in great detail how I was wrong about everything important and so I should kill myself. With my history, that's the last thing I needed but that wasn't going to keep me from writing. Worst of all, thinking about anything other than pain and suffering results in a nice sucker punch to the gut from guilt. I'm not supposed to be enjoying this!
Chances are that I will die in agony sooner than I would like and there's nothing that I can do to change that. That is a terrifying prospect but accepting it does not bring despair. The perception of guilt is what provides me with despair and I focus a lot of effort on fighting off that corrosive guilt. It's been a few years since I promised myself that I would make some changes. I was going to stop feeling guilty about being sick. The second part was going to be tougher but I was going to stop feeling guilty over Melissa caring for me. We both take our wedding vows seriously and I do what I can for her. In order to be easier to care for, I was going to make coping with my symptoms and their complex effects my number one daily priority. I came to the realization that dealing with chronic pain that's this bad is a full time job with hours that no one would accept by choice.
For those of you who wish to tell me how self serving this concept is, I have nothing but agreement. That's the point of it. I'd like to take a bit of the burden off Melissa but it's more self serving than that. I have two general approaches that I could take to all but knowing that I'll die in agony someday. (It's not a diagnosis but I'm living in agony so it's not much of a stretch.) One is deciding to hurry things along and we're tossing that one out the proverbial window. The other is to concentrate on the things that I enjoy the most while trying to keep things from spinning out of control. Once things are spinning this badly, I refuse to yell at any helpless son who may be in the room so my choices are to enjoy the ride or to projectile vomit. Thankfully, I have a strong stomach.
The alternative to holding on to those aspects of life I cherish is self destruction. Once upon a time, that was my default position. I'm not going sit by and watch while the wolves come smashing down my door and destroy everything. When the time comes, and it should be a matter of a week or two now, I'll fight my best fight. Chances are that I will face quite a few setbacks but my goal is to avoid kicking myself for failing to avoid them. Let's make it a given that setbacks will be the direct result of some poor decision making. It's also a given that I would have made different decisions if I weren't bombarded by pain.
I will learn from these mistakes, I will attempt to make positive changes based on what I learned but I will not accept ultimate blame for them anymore. If I weren't in absurd amounts of pain, I wouldn't be making these mistakes. I'd make other, more entertaining mistakes.
All of that said, I'm enjoying some things about my life right now. I have some tremendous games on my Android tablet right now. "Star Wars: Uprising" is getting better and better as I learn to play it. It's a role playing game, which means something a little different in computer games than it does in the paper and dice games I miss. Instead of engaging with other people on the level of imagination, you do similar things with the graphics right in front of you. The greatest strength of paper and dice RPGs is the unlimited imagination potential involved. If I want to make the bad guy truly terrifying, I might borrow a few real crimes committed by historical serial killers or I could go the other route and invent a cereal killer. (He's...ummm... "crazy" about Cocoa Pops.) A computer RPG will tend to pull back on anything graphic (pun intended) and have you kill endless numbers of nameless stormtroopers.
Computer RPGs depend on a player's willingness to perform tasks usually called "grinding." (Other times, it's called "farming.") In order to be powerful enough to sneak aboard the Star Destroyer, you have to battle stormtroopers in skirmishes a few hundred times. Grinding isn't all that bad if the game is balanced right. For every x number of hours spent grinding, you get y number of cool new abilities. Just when I was getting bored with how badly the troopers outgunned me, I acquired a new weapon that put out a greater volume of fire.
I am getting tired and I'd love to write about more of the better things in life (without embarrassing Melissa who is the best part of life - Oops!) but I learned long ago that begrudging myself naptime is an idea bad enough to be trademarked. Just remember that nothing has changed except what I'm showing you. There's pain, fear, doughnuts and coffee.
My parents made such accusations but hardly ever explicitly. A pair of losers once wrote me emails explaining in great detail how I was wrong about everything important and so I should kill myself. With my history, that's the last thing I needed but that wasn't going to keep me from writing. Worst of all, thinking about anything other than pain and suffering results in a nice sucker punch to the gut from guilt. I'm not supposed to be enjoying this!
Chances are that I will die in agony sooner than I would like and there's nothing that I can do to change that. That is a terrifying prospect but accepting it does not bring despair. The perception of guilt is what provides me with despair and I focus a lot of effort on fighting off that corrosive guilt. It's been a few years since I promised myself that I would make some changes. I was going to stop feeling guilty about being sick. The second part was going to be tougher but I was going to stop feeling guilty over Melissa caring for me. We both take our wedding vows seriously and I do what I can for her. In order to be easier to care for, I was going to make coping with my symptoms and their complex effects my number one daily priority. I came to the realization that dealing with chronic pain that's this bad is a full time job with hours that no one would accept by choice.
For those of you who wish to tell me how self serving this concept is, I have nothing but agreement. That's the point of it. I'd like to take a bit of the burden off Melissa but it's more self serving than that. I have two general approaches that I could take to all but knowing that I'll die in agony someday. (It's not a diagnosis but I'm living in agony so it's not much of a stretch.) One is deciding to hurry things along and we're tossing that one out the proverbial window. The other is to concentrate on the things that I enjoy the most while trying to keep things from spinning out of control. Once things are spinning this badly, I refuse to yell at any helpless son who may be in the room so my choices are to enjoy the ride or to projectile vomit. Thankfully, I have a strong stomach.
The alternative to holding on to those aspects of life I cherish is self destruction. Once upon a time, that was my default position. I'm not going sit by and watch while the wolves come smashing down my door and destroy everything. When the time comes, and it should be a matter of a week or two now, I'll fight my best fight. Chances are that I will face quite a few setbacks but my goal is to avoid kicking myself for failing to avoid them. Let's make it a given that setbacks will be the direct result of some poor decision making. It's also a given that I would have made different decisions if I weren't bombarded by pain.
I will learn from these mistakes, I will attempt to make positive changes based on what I learned but I will not accept ultimate blame for them anymore. If I weren't in absurd amounts of pain, I wouldn't be making these mistakes. I'd make other, more entertaining mistakes.
All of that said, I'm enjoying some things about my life right now. I have some tremendous games on my Android tablet right now. "Star Wars: Uprising" is getting better and better as I learn to play it. It's a role playing game, which means something a little different in computer games than it does in the paper and dice games I miss. Instead of engaging with other people on the level of imagination, you do similar things with the graphics right in front of you. The greatest strength of paper and dice RPGs is the unlimited imagination potential involved. If I want to make the bad guy truly terrifying, I might borrow a few real crimes committed by historical serial killers or I could go the other route and invent a cereal killer. (He's...ummm... "crazy" about Cocoa Pops.) A computer RPG will tend to pull back on anything graphic (pun intended) and have you kill endless numbers of nameless stormtroopers.
Computer RPGs depend on a player's willingness to perform tasks usually called "grinding." (Other times, it's called "farming.") In order to be powerful enough to sneak aboard the Star Destroyer, you have to battle stormtroopers in skirmishes a few hundred times. Grinding isn't all that bad if the game is balanced right. For every x number of hours spent grinding, you get y number of cool new abilities. Just when I was getting bored with how badly the troopers outgunned me, I acquired a new weapon that put out a greater volume of fire.
I am getting tired and I'd love to write about more of the better things in life (without embarrassing Melissa who is the best part of life - Oops!) but I learned long ago that begrudging myself naptime is an idea bad enough to be trademarked. Just remember that nothing has changed except what I'm showing you. There's pain, fear, doughnuts and coffee.
Tuesday, September 29, 2015
The Tears Won't Fall
I keep finding myself wanting to cry but I can't. Each time thar I lose something life affirming, it feels as though the bottom of the pit must be closer. Normally, that wouldn't bother me because I have a fondness for trampolines. Now, I'm like the player who has survived a game of Russian Roulette that has gone on for dozens of rounds. Getting back to my original metaphor, I know that one of these pits has gigantic poisoned metal spikes in the bottom instead of something to get me out of the pit. Depending on how you look at it, life should either have to stop demanding things of me until I'm feeling better or I should get an extended break from the pain and stress to deal with those facts of life.
One problem is that I can just hear my feather's criticism echoing from the past. "John, you're already getting an unreasonable amount of help. It doesn't matter that your health keeps getting worse. I've decided that you can deal with everything because it must be done. It must be done so you do it or get your wife to do it." Forget that it is impossible to do certain things and just do them. It's a great movie plot but it's more like being up shit creek without a paddle in real life. Getting my wife to do it is my favorite line. She has her limits, too. Somehow, she exceeds them every day functioning while at least as frustrated as I am.
A good friend wrote me and told me that her nightmares about her father still bother her 30 years after his death. It doesn't surprise me since my father has been as good as dead to me for a couple of years which is a huge improvement but the nightmares didn't stop. Death doesn't fix the issues you have with someone in life. All it does is make it impossible to gain closure. Then again, another friend advised me of the cold hard truth a long time ago: I will never gain my parents' approval. It wasn't cruelty in its proper context. My suicidal ideation was based on frustration about being about to win their love and approval. Taking away the impossible goal helped me be more realistic about my own expectations.
Life is not all bad even on my hellishly painful days. On my very good days, I can spend a number of hours here at my desk being productive. These days are rare but one can help me get more out of the reasonably good and average days. We're talking a couple of hours at my computer where I might salvage one productive hour of work by combining all I wrote. There are two generally unproductive modes for me to be in and they both involve me being downstairs. If I have some energy, I can use the Playstation which requires me to sit upright to do well. Finally, I can use the tablet well into a state of collapse. My tablet might be the best gift from Melissa since she married me.
Recently, I've installed some new games on the tablet. One is "Cooking Fever" which Melissa enjoys as well and the other is "Star Wars: Uprising." Uprising is unbelievably good so it's a shame that it doesn't run on the old (Melissa's) tablet and she's filled her phone with games. Even on the worst of days, I can divert myself without adding to the wear and tear which is a good thing. Keeping with the "logic" of life back when I was living with my parents, anything I enjoy has to be taken away or, at least, threatened. After all, there is an inverse relationship between the amount of frustration in my life and my grades. (Near flashblack there. I wouldn't be able to write during a true flashback but I want anyone going through similar things to understand. Damage done early on is the worst and most difficult to fix.)
Anyway, I've been having trouble keeping my tablet charged. Sometimes, one of the connections comes loose usually out of my sight. Other times, it just doesn't seem to be taking in much of a charge. I know the battery is the whole point and I'm supposed to hate wires but I'd very much like a cord that plugs directly into a wall that carries more charge than my favorite games use second to second.
This post started when I couldn't keep enough charge in the tablet to check my email and learned that the charger was unplugged at the wall. It was a simple fix but I wanted to do my evening writing. One thing led to another and I found myself ready to detonate in pain and frustration. I never did manage to shed a tear just like I've never been able to mourn the years that have passed since I was 25. On the other hand, I'm guaranteed major pain today/tomorrow because I haven't been sleeping right. I predict screaming, hollering, yelling at a cat who scratched up a Pearl Jam CD in an attempt to be fed ever earlier. I wonder if Maddie sabotaged my tablet.
One problem is that I can just hear my feather's criticism echoing from the past. "John, you're already getting an unreasonable amount of help. It doesn't matter that your health keeps getting worse. I've decided that you can deal with everything because it must be done. It must be done so you do it or get your wife to do it." Forget that it is impossible to do certain things and just do them. It's a great movie plot but it's more like being up shit creek without a paddle in real life. Getting my wife to do it is my favorite line. She has her limits, too. Somehow, she exceeds them every day functioning while at least as frustrated as I am.
A good friend wrote me and told me that her nightmares about her father still bother her 30 years after his death. It doesn't surprise me since my father has been as good as dead to me for a couple of years which is a huge improvement but the nightmares didn't stop. Death doesn't fix the issues you have with someone in life. All it does is make it impossible to gain closure. Then again, another friend advised me of the cold hard truth a long time ago: I will never gain my parents' approval. It wasn't cruelty in its proper context. My suicidal ideation was based on frustration about being about to win their love and approval. Taking away the impossible goal helped me be more realistic about my own expectations.
Life is not all bad even on my hellishly painful days. On my very good days, I can spend a number of hours here at my desk being productive. These days are rare but one can help me get more out of the reasonably good and average days. We're talking a couple of hours at my computer where I might salvage one productive hour of work by combining all I wrote. There are two generally unproductive modes for me to be in and they both involve me being downstairs. If I have some energy, I can use the Playstation which requires me to sit upright to do well. Finally, I can use the tablet well into a state of collapse. My tablet might be the best gift from Melissa since she married me.
Recently, I've installed some new games on the tablet. One is "Cooking Fever" which Melissa enjoys as well and the other is "Star Wars: Uprising." Uprising is unbelievably good so it's a shame that it doesn't run on the old (Melissa's) tablet and she's filled her phone with games. Even on the worst of days, I can divert myself without adding to the wear and tear which is a good thing. Keeping with the "logic" of life back when I was living with my parents, anything I enjoy has to be taken away or, at least, threatened. After all, there is an inverse relationship between the amount of frustration in my life and my grades. (Near flashblack there. I wouldn't be able to write during a true flashback but I want anyone going through similar things to understand. Damage done early on is the worst and most difficult to fix.)
Anyway, I've been having trouble keeping my tablet charged. Sometimes, one of the connections comes loose usually out of my sight. Other times, it just doesn't seem to be taking in much of a charge. I know the battery is the whole point and I'm supposed to hate wires but I'd very much like a cord that plugs directly into a wall that carries more charge than my favorite games use second to second.
This post started when I couldn't keep enough charge in the tablet to check my email and learned that the charger was unplugged at the wall. It was a simple fix but I wanted to do my evening writing. One thing led to another and I found myself ready to detonate in pain and frustration. I never did manage to shed a tear just like I've never been able to mourn the years that have passed since I was 25. On the other hand, I'm guaranteed major pain today/tomorrow because I haven't been sleeping right. I predict screaming, hollering, yelling at a cat who scratched up a Pearl Jam CD in an attempt to be fed ever earlier. I wonder if Maddie sabotaged my tablet.
Monday, September 28, 2015
Open Warfare in My Head
In a bold move unanticipated by everyone involved, my Fall symptoms exploded a bomb in the back of my head covering the entire surgical area. That area is defined by the surgical scar that starts down between the very top of my shoulder blades and continues all the way up to the top of my head where a local doctor found a staple while treating me for some completely unrelated thing. It was removed two years late but everyone is confident that it had nothing to do with my surgery's unsuccessful outcome. Simultaneously, my shattered teeth secreted some sort of acid that made my whole mouth hurt. Finally, another bomb exploded in my jaw connecting the pain in the front of my head to the pain in the back and in the neck.
All I could do was cover the entire inside of my mouth with one of those Orajel style products, take my medicines on time and recline with a cold pack wrapped around as much of my face as it could cover. The key was to remain calm and hold on because one of the medicines was going to work or someone was going to bring me home some medicinal reinforcement. (It's formal name is whiskey but I don't drink it for the taste.) I'll explain later why I didn't have any on hand but I knew that I would make it eventually. Time passes including both the good and bad aspects of life.
As I made it to that meditative state that leads to sleep when I'm physically exhausted. We call those days that end in "y." As soon as the pain was on the separate side of my mind from where I was living, the cat signal went off. (I have trouble describing meditation adequately because I learned so much of it from reading science fiction and fantasy novels.) Maddie insisted that 2 PM was actually 5 PM and so her dinner was about to be late. Normally, I meditate to the sound of my own breathing but a yowling cat makes regular breathing difficult so I played a favorite Pearl Jam CD. It's the bootleg from the night Melissa and I attended. (It's a legal bootleg produced and sold by the band in case you're wondering. I'm not hypocritical about intellectual property rights.)
Madeline (the evil bitch cat from hell or my sweet baby girl depending on the circumstances) jumped up on my CD player and popped out the CD while it was playing. She scratched it up pretty good in the process but I'm hoping to work these scratches out like the ones resulting from being stored badly for months at a time. Unfortunately, Maddie decided that she didn't want me to relax and feel better. She wanted to be fed and didn't care who had to crawl across the broken glass and glowing charcoal floor to do it. (It's my blog. I'll exaggerate when I want to.) She did take several more flying leaps at me and I am touch sensitive all over my body during winter symptoms. Eventually, I hid myself behind a closed door in the office and tried to work while my neighbor the car detailer sent metal spikes through my head. He was cleaning a van and his customer was shouting a conversation over that noise.
Chilly Weekend and Rough Passage are coming along pretty well. I tend to write late at night when the office is most useable to me. One thing slowing the work down is having to listen to my body. Every so often, I can keep one of my symptoms from dialing itself up to 11 by giving my body what it needs. Usually, that's rest or sleep that I need but I'm troubled by nightmares that don't sound so scary to me while fully awake. If I hear an angry or just loud male voice, I dream that my father is in my home. He's decided to keep his distance the way I keep mine for both of our sakes unless I've missed my guess but dreaming his voice leaves me awake and shaking for hours That's the other thing the whiskey does well. If I'm shaking from my PTSD, it helps me stop.
As a day sleeper, this leads to some funny looking journal mentions of having a drink at 7 AM but I assure you that I've been awake anywhere from 12 to 30 hours at that point. It's always five o'clock in that burning war zone I call a nervous system. I had a full morning of work planned but I'm just going to have to try some rest.
All I could do was cover the entire inside of my mouth with one of those Orajel style products, take my medicines on time and recline with a cold pack wrapped around as much of my face as it could cover. The key was to remain calm and hold on because one of the medicines was going to work or someone was going to bring me home some medicinal reinforcement. (It's formal name is whiskey but I don't drink it for the taste.) I'll explain later why I didn't have any on hand but I knew that I would make it eventually. Time passes including both the good and bad aspects of life.
As I made it to that meditative state that leads to sleep when I'm physically exhausted. We call those days that end in "y." As soon as the pain was on the separate side of my mind from where I was living, the cat signal went off. (I have trouble describing meditation adequately because I learned so much of it from reading science fiction and fantasy novels.) Maddie insisted that 2 PM was actually 5 PM and so her dinner was about to be late. Normally, I meditate to the sound of my own breathing but a yowling cat makes regular breathing difficult so I played a favorite Pearl Jam CD. It's the bootleg from the night Melissa and I attended. (It's a legal bootleg produced and sold by the band in case you're wondering. I'm not hypocritical about intellectual property rights.)
Madeline (the evil bitch cat from hell or my sweet baby girl depending on the circumstances) jumped up on my CD player and popped out the CD while it was playing. She scratched it up pretty good in the process but I'm hoping to work these scratches out like the ones resulting from being stored badly for months at a time. Unfortunately, Maddie decided that she didn't want me to relax and feel better. She wanted to be fed and didn't care who had to crawl across the broken glass and glowing charcoal floor to do it. (It's my blog. I'll exaggerate when I want to.) She did take several more flying leaps at me and I am touch sensitive all over my body during winter symptoms. Eventually, I hid myself behind a closed door in the office and tried to work while my neighbor the car detailer sent metal spikes through my head. He was cleaning a van and his customer was shouting a conversation over that noise.
Chilly Weekend and Rough Passage are coming along pretty well. I tend to write late at night when the office is most useable to me. One thing slowing the work down is having to listen to my body. Every so often, I can keep one of my symptoms from dialing itself up to 11 by giving my body what it needs. Usually, that's rest or sleep that I need but I'm troubled by nightmares that don't sound so scary to me while fully awake. If I hear an angry or just loud male voice, I dream that my father is in my home. He's decided to keep his distance the way I keep mine for both of our sakes unless I've missed my guess but dreaming his voice leaves me awake and shaking for hours That's the other thing the whiskey does well. If I'm shaking from my PTSD, it helps me stop.
As a day sleeper, this leads to some funny looking journal mentions of having a drink at 7 AM but I assure you that I've been awake anywhere from 12 to 30 hours at that point. It's always five o'clock in that burning war zone I call a nervous system. I had a full morning of work planned but I'm just going to have to try some rest.
Wednesday, September 16, 2015
Running Out of Things
As long as the weather is right and I don't run out of things, my symptoms are sorta under control. I can only write that with a straight face because of the pain. Yesterday, I got my hands on a new supply of the drug prescribed for Restless Leg Syndrome. As regular readers know, I have Restless Arm Syndrome instead but my innovative pain management specialist decided that I was right about my symptoms just being a weird variation on RLS. Therefore, he prescribed the RLS medication for me as well as the fibromyalgia medicine since I realized some of my symptoms were dead on for that lovely problem. So long as I take the two together along with my arthritis medication, the anti-depressant prescribed for pain control and my two kinds of narcotics, my symptoms are under control. That means I only have a couple hours of severe pain each day.
I have one day's worth of all my medicines together in order to try getting things under control. The key to not freaking out is to remember that it takes a few days for all of my medicines to get their acts together and to make me feel a little better. Some improvement is better than no improvement. Right? Therefore, I am trying to ignore the fact that my arms feel like I just flew in from Europe or Northwest Canada. We've had some wet weather along with a sudden shortage (only a few days ago) of purely medicinal whiskey that numbs the tooth pain so I'm on fire. Admittedly, I've felt worse but that doesn't count for much when you've had brain and spine surgery.
It turns out that September is Chiari Awareness Month though I'm not sure how many outside the community are aware of this. It won't truly count for me until I get to present what I know on the subject and do so professionally. I find it difficult to write about certain things like incontinence even when I'm frustrated. Depends are one of those things that I came very close to running out of this past week. The only reason that I didn't was that I put myself through conservation measures that may have caused me more or less permanent injury. I suppose some outpatient surgery and other humiliation could bring me back to some sort of base level of illness where the skin deterioration would stop for a while.
Maybe it's easier to write about these things when I'm frustrated. Frustration is easier to handle than despair which is where I've been off and on for a while now. This is when I need to remember my lessons from Stephen R. Donaldson. I can't remember the exact quote but there's one about not giving up because wonders may redeem you. There have been times when I have fought on through impossible circumstances and found some sort of unexpected rescue at the end of the tunnel. Of course, I have to remind you that these were impossible looking circumstances for people like me and not anything that would call for Army Rangers or Delta Force. I do what I can while trying to avoid comparing my best to what a healthy person brought up to trust himself might be able to do. After all, it's not my fault if I fail to exceed myself.
I have one day's worth of all my medicines together in order to try getting things under control. The key to not freaking out is to remember that it takes a few days for all of my medicines to get their acts together and to make me feel a little better. Some improvement is better than no improvement. Right? Therefore, I am trying to ignore the fact that my arms feel like I just flew in from Europe or Northwest Canada. We've had some wet weather along with a sudden shortage (only a few days ago) of purely medicinal whiskey that numbs the tooth pain so I'm on fire. Admittedly, I've felt worse but that doesn't count for much when you've had brain and spine surgery.
It turns out that September is Chiari Awareness Month though I'm not sure how many outside the community are aware of this. It won't truly count for me until I get to present what I know on the subject and do so professionally. I find it difficult to write about certain things like incontinence even when I'm frustrated. Depends are one of those things that I came very close to running out of this past week. The only reason that I didn't was that I put myself through conservation measures that may have caused me more or less permanent injury. I suppose some outpatient surgery and other humiliation could bring me back to some sort of base level of illness where the skin deterioration would stop for a while.
Maybe it's easier to write about these things when I'm frustrated. Frustration is easier to handle than despair which is where I've been off and on for a while now. This is when I need to remember my lessons from Stephen R. Donaldson. I can't remember the exact quote but there's one about not giving up because wonders may redeem you. There have been times when I have fought on through impossible circumstances and found some sort of unexpected rescue at the end of the tunnel. Of course, I have to remind you that these were impossible looking circumstances for people like me and not anything that would call for Army Rangers or Delta Force. I do what I can while trying to avoid comparing my best to what a healthy person brought up to trust himself might be able to do. After all, it's not my fault if I fail to exceed myself.
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