I apologize for being grumpy lately. I haven't been feeling very well and there's been a lot going on that has really taken its toll on me, again. I have Parkinson's disease, as I've mentioned on and off in the forums. I did quite well for nearly 7 years, accepting what I have and going on with my life. Why is it when you think things are going to go fine, you're happy, and everything starts to fall into place, and it is then that everything crashes? I was doing well. I had a job I liked. It paid fairly well, and I have enough vacation time that I could take my 10-day storm chasing trips and still have time left over for other days off if I wanted them. The stress had been insane, but like any job you take what you have, suck it up and the stress dies down eventually. I've worked like this for decades, even ran my own business and worked a second job to make ends meet during the start-up phase. You do what you need to do!
Well recently everything has gone to hell and back. My symptoms have gotten worse since my medication no longer works well. I tried going without the medication for awhile, but that wasn't the best thing either. The same side effects came back that I was having before because the medication is no longer as effacious as it used to be. What's happening is the medication is no longer being absorbed into my system so it sits in my gut and gets taken up into the bloodstream. This causes the worst case of nausea that is completely unexplainable in words. You just want to die, but death of course doesn't come that easy. Eventually this feeling passes just in time for the next dose! This is the cyclic nature of the medication and the condition. My doctor and I are looking at other medication to help this, but right now I'm being very pessimistic. I've had my hopes up too high for too long! To add insult to injury, I fell a few times at work which made me feel smaller than an ant! I wanted so much to crawl in between the cracks on the lobby floor. When I walk, I shuffle along like I'm 90 and have had off and on difficult times getting out of a chair. And to add insult to injury, I've got the well known tremor now which I barely had before. When I'm very tired and very stressed, my right hand is uncontrollably tremulous. At work I used to hide my hand so no one would see it. Eventually coworkers saw my tremors and I had to explain. That was like telling the National Enquirer. After that everyone knew what was going on. Some people knew already because I had to tell them, but now the rest of the people know!
Over time my work output has decreased. I just don't have the energy to continue, and as a result my work has suffered more due to the condition and stress. I've been unable to keep up the pace any longer, and I was informed by my manager that I would be terminated for poor performance. He knows I wasn't feeling well and I was trying my best. He was informed of my condition, but chose to do this anyway. Sadly the law is on his side on this since he does have a business to run. I understand that, but it didn't make me feel any better. This is the result of the Parkinson's Apathy and Fatigue for which I found an excellent explanation from from the MJF Foundation:
"This is not your garden variety bone-tired. This is fatigue on a cellular level. Your body is working overtime to accomplish the simplest of tasks: Taking a shower, answering the phone, pouring orange juice. In addition, you may be coping with the combination of possible cognitive problems known as "Parkinson's apathy". These problems include difficulty initiating projects, inability to follow complex instructions, short-term memory loss and difficulty in switching gears midstream."
This sums me up right down to the crossing of the t's and dotting of the i's! On top of the fatigue as an IT technician, my job involves being able to switch gears in midstream, to follow complex instructions, and work on projects! So I wasn't becoming lazy, or old, I just couldn't do it anymore mentally. I've been so tired, I've fallen asleep at my desk. At home I sit at my computer and wake up 3 hours later. My brain is too tired to think; to do anything for that matter. It's very frustrating for someone who was always on the go. I always had great plans when I got home. I've been working on my mega-route, but instead I fall asleep at my desk. I want to play the piano, which sadly is no longer a big part of my life since that vascular incident in February. I sit there and my hands just don't have the coordination needed for that, so I play like a 3rd-year piano student instead of an accomplished, concert-level, pianist I once was. I figured a bit of practice would get them back into shape, but the effort for the practicing is too much. To add insult to injury, when I do have a good practice time it doesn't last. This is coming from someone that used to practice 8 hours a day, 7 days a week. And 2-3 hours a day when working full time plus the 8 hours a day on weekends. I am lucky I can get in 15 minutes without becoming so frustrated with myself I want to cut the piano up into sawdust. This is like a slap in the face! The worst I think were the wicked brain farts at work, my inability to communicate at times, among other issues. The clincher here is this was my career, my vocation for the past 30 years, and my ability to make money and pay my bills.
So at the moment, I am quite overwhelmed with everything, not just physically, but mentally and emotionally as well. I rarely ask for advice or help and usually figure out things on my own. In the past I've gone to nearly all my tests and exams alone. No one has driven me unless I need to be driven, now things are different. I can say that this is my scariest moment in my life. I'm not sure what my future will entail, both physically as well as emotionally. As I write this, I am crying inside. I'm trying my best to keep up with day-to-day life, the normalcy that we're used to. Even filing the disability paperwork was something that took a lot more work psychologically than it did physically. For me it was demoralizing because I have worked in some fashion for 40 out of my 51 years. This is also to me a sign of "giving in" to this monster, which is something I have never done in my life. I never give in to anything. My stubborn nature has kept me going for a long time. I've always sucked up what was wrong, dealt with the situation and moved on. The old British and Irish blood from my mom's side kicks in and says keep up, don't give in. The old "You broke only one toe? Keep going because you have nine more!", has always been my mantra; the way I was brought up. Anyway I've sucked up my pride going on close to 7 years with this beast, just taking the situation and dealing with the twists and turns, but now I'm giving in to it. My energy just isn't there to fight.
Anyway Trainz and the forums are my escape from "my rotten world" as many of us know. If it weren't for you guys (and I say this collectively), along with the game or program its self, I think everything would have been lost a lot sooner.
There's no need to post back on this thread. I just wanted to let everyone know that I am not quite myself even though I'm trying my best to suck everything up and continue on my journey. Perhaps after the shock of this reality check fades, I'll get my sense of humor back and be less grumpy.
John
Well recently everything has gone to hell and back. My symptoms have gotten worse since my medication no longer works well. I tried going without the medication for awhile, but that wasn't the best thing either. The same side effects came back that I was having before because the medication is no longer as effacious as it used to be. What's happening is the medication is no longer being absorbed into my system so it sits in my gut and gets taken up into the bloodstream. This causes the worst case of nausea that is completely unexplainable in words. You just want to die, but death of course doesn't come that easy. Eventually this feeling passes just in time for the next dose! This is the cyclic nature of the medication and the condition. My doctor and I are looking at other medication to help this, but right now I'm being very pessimistic. I've had my hopes up too high for too long! To add insult to injury, I fell a few times at work which made me feel smaller than an ant! I wanted so much to crawl in between the cracks on the lobby floor. When I walk, I shuffle along like I'm 90 and have had off and on difficult times getting out of a chair. And to add insult to injury, I've got the well known tremor now which I barely had before. When I'm very tired and very stressed, my right hand is uncontrollably tremulous. At work I used to hide my hand so no one would see it. Eventually coworkers saw my tremors and I had to explain. That was like telling the National Enquirer. After that everyone knew what was going on. Some people knew already because I had to tell them, but now the rest of the people know!
Over time my work output has decreased. I just don't have the energy to continue, and as a result my work has suffered more due to the condition and stress. I've been unable to keep up the pace any longer, and I was informed by my manager that I would be terminated for poor performance. He knows I wasn't feeling well and I was trying my best. He was informed of my condition, but chose to do this anyway. Sadly the law is on his side on this since he does have a business to run. I understand that, but it didn't make me feel any better. This is the result of the Parkinson's Apathy and Fatigue for which I found an excellent explanation from from the MJF Foundation:
"This is not your garden variety bone-tired. This is fatigue on a cellular level. Your body is working overtime to accomplish the simplest of tasks: Taking a shower, answering the phone, pouring orange juice. In addition, you may be coping with the combination of possible cognitive problems known as "Parkinson's apathy". These problems include difficulty initiating projects, inability to follow complex instructions, short-term memory loss and difficulty in switching gears midstream."
This sums me up right down to the crossing of the t's and dotting of the i's! On top of the fatigue as an IT technician, my job involves being able to switch gears in midstream, to follow complex instructions, and work on projects! So I wasn't becoming lazy, or old, I just couldn't do it anymore mentally. I've been so tired, I've fallen asleep at my desk. At home I sit at my computer and wake up 3 hours later. My brain is too tired to think; to do anything for that matter. It's very frustrating for someone who was always on the go. I always had great plans when I got home. I've been working on my mega-route, but instead I fall asleep at my desk. I want to play the piano, which sadly is no longer a big part of my life since that vascular incident in February. I sit there and my hands just don't have the coordination needed for that, so I play like a 3rd-year piano student instead of an accomplished, concert-level, pianist I once was. I figured a bit of practice would get them back into shape, but the effort for the practicing is too much. To add insult to injury, when I do have a good practice time it doesn't last. This is coming from someone that used to practice 8 hours a day, 7 days a week. And 2-3 hours a day when working full time plus the 8 hours a day on weekends. I am lucky I can get in 15 minutes without becoming so frustrated with myself I want to cut the piano up into sawdust. This is like a slap in the face! The worst I think were the wicked brain farts at work, my inability to communicate at times, among other issues. The clincher here is this was my career, my vocation for the past 30 years, and my ability to make money and pay my bills.
So at the moment, I am quite overwhelmed with everything, not just physically, but mentally and emotionally as well. I rarely ask for advice or help and usually figure out things on my own. In the past I've gone to nearly all my tests and exams alone. No one has driven me unless I need to be driven, now things are different. I can say that this is my scariest moment in my life. I'm not sure what my future will entail, both physically as well as emotionally. As I write this, I am crying inside. I'm trying my best to keep up with day-to-day life, the normalcy that we're used to. Even filing the disability paperwork was something that took a lot more work psychologically than it did physically. For me it was demoralizing because I have worked in some fashion for 40 out of my 51 years. This is also to me a sign of "giving in" to this monster, which is something I have never done in my life. I never give in to anything. My stubborn nature has kept me going for a long time. I've always sucked up what was wrong, dealt with the situation and moved on. The old British and Irish blood from my mom's side kicks in and says keep up, don't give in. The old "You broke only one toe? Keep going because you have nine more!", has always been my mantra; the way I was brought up. Anyway I've sucked up my pride going on close to 7 years with this beast, just taking the situation and dealing with the twists and turns, but now I'm giving in to it. My energy just isn't there to fight.
Anyway Trainz and the forums are my escape from "my rotten world" as many of us know. If it weren't for you guys (and I say this collectively), along with the game or program its self, I think everything would have been lost a lot sooner.
There's no need to post back on this thread. I just wanted to let everyone know that I am not quite myself even though I'm trying my best to suck everything up and continue on my journey. Perhaps after the shock of this reality check fades, I'll get my sense of humor back and be less grumpy.
John
