Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Good morning Dale, You have sure had a rough go at it lately. You are a very strong person to keep going and going and going like the energizer bunny. I dont blame you for getting so discouraged at times, this stupid disease seems to do that to us. You are right that when you get angry it makes the disease in control of you.Stress will do that. Awhile back my hubby and I went through family counciling because of my step son, they told us that when we get angry and yell and srcream that he is in control of the situation not us. That is true in many situations. Since my hubbys stroke he has started a journal to write down his frustrations and his happy moments. Since the last episode with the tear in his bowel the journal has come in handy once again because he is so angry at all that has happened to him in the last 2 years. Do you have a hobby that you can do to get your mind off things, like reading, doing puzzles or anything that isnt too strenuios (sp). You mentioned your wife does everything for you and that really makes you upset. Is there a way you can help her out with easy tasks like folding clothes and sitting down to iron the clothes? Dale I really hope today is even a better day for you, Sandy rumbleings from Dale Hi, won't be as long as usual (most are happy ;-), typing is still slow. A week ago I had the best day that I have had since my ordeal started. It was great, no brain fog and I wasn't stiff at all! I worked out and exercised most of the day, the next day for my six hour P. T. I had some brain fog and stiffness. This is gotten worse each day until this morning it took me 45 minutes just to be able to sit up and in bed and the brain fog was horrid. I had wanted the doctor to set my pump a little higher and P.T. yesterday but he said no because he thought to hire was maybe having a rebound effect. I was just depressed this morning, I told my wife I am so sick of fighting my body. When that happens it's so hard to not put a face on my a disease PLS. You need to have something to focus on, to blame it is you against the beast. I was so angry at the beast because it makes me so self-centered, all I can think about is how can I survive? My wife has to do just about everything for me. It seems like me me me and I hate it. The good news is that it I got much better this afternoon so maybe the doctor was right. But I also realized once again that yelling at PLS is the like yelling at the thunder the way our ancestors did. It gives it too much power it's just doing what it should, destroying my Upper motor neurons. It just is. It's so hard to remember that when you hurt and are tired of fighting. But now I'm back again looking forward to P. T. and hoping to move forward again. I will say to finish that the thing I think I hate the most, is how self-centered your thinking gets the worse the disease gets. And I have thought a lot about myself in the last two months. Hopefully I can think outside myself more in the near future. dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Dale, since you cannot do your write up on your experience why not use a recorder. You can record it while its still fresh in your mind and get back to it when you can type. I know its frustrating as hell to depend on others but they love us and you'd do the same if things were reversed. Give it time, you'll get there your body is experiencing a new foreign object and doesn't really know how to response to it. Its OK to be all about you.......................Keep fighting....Flora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Hi Sandy and all the rest. I had to respond to this one because you don't know me, I have tons of things I want to do and was doing them until my surgery and all the problems. I still have not finished my write up on what happened but lets just say my mobility was greatly cut down (and it wasn't much before!) I am slowly getting better and can do a few things now but way too slowly! What I was getting at is it took me 45 minutes to be able to sit up in bed that morning. When I finally was able to I was exhausted from all the work... I couldn't do anything for hours so by noon I had gotten up, eaten breakfast and dressed... It was all ME, I couldn't do anything else for anybody, that is what I was angry about. Today I'm better, home from my 6 hour pt session (and nap!). Still was stiff today, had to fight my own body all day but I fight but now that I think of it, everything I did today was about me... Ok, now you depressed me again ;-)... But you see what I mean? dale rumbleings from Dale > > > Hi, won't be as long as usual (most are happy ;-), typing is still slow. A > week ago I had the best day that I have had since my ordeal started. It was > great, no brain fog and I wasn't stiff at all! I worked out and exercised > most of the day, the next day for my six hour P. T. I had some brain fog and > stiffness. This is gotten worse each day until this morning it took me 45 > minutes just to be able to sit up and in bed and the brain fog was horrid. > I had wanted the doctor to set my pump a little higher and P.T. yesterday > but he said no because he thought to hire was maybe having a rebound effect. > > I was just depressed this morning, I told my wife I am so sick of fighting > my body. When that happens it's so hard to not put a face on my a disease > PLS. You need to have something to focus on, to blame it is you against > the beast. I was so angry at the beast because it makes me so > self-centered, all I can think about is how can I survive? My wife has to > do just about everything for me. It seems like me me me and I hate it. > > The good news is that it I got much better this afternoon so maybe the > doctor was right. But I also realized once again that yelling at PLS is the > like yelling at the thunder the way our ancestors did. It gives it too much > power it's just doing what it should, destroying my Upper motor neurons. It > just is. It's so hard to remember that when you hurt and are tired of > fighting. But now I'm back again looking forward to P. T. and hoping to > move forward again. > > I will say to finish that the thing I think I hate the most, is how > self-centered your thinking gets the worse the disease gets. And I have > thought a lot about myself in the last two months. Hopefully I can think > outside myself more in the near future. > > dale > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 I am writing it up, I am kind of between a rock and a hard place, you it hit my voice pretty hard also, like my hands, it's slowly getting better. dale Re: rumbleings from Dale > Dale, since you cannot do your write up on your experience why not use a > recorder. You can record it while its still fresh in your mind and get back to > it when you can type. I know its frustrating as hell to depend on others but > they love us and you'd do the same if things were reversed. Give it time, > you'll get there your body is experiencing a new foreign object and doesn't > really know how to response to it. Its OK to > be all about you.......................Keep fighting....Flora > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 I'm sorry Dale I hope I didnt cross the line. Sandy rumbleings from Dale > > > Hi, won't be as long as usual (most are happy ;-), typing is still slow. A > week ago I had the best day that I have had since my ordeal started. It was > great, no brain fog and I wasn't stiff at all! I worked out and exercised > most of the day, the next day for my six hour P. T. I had some brain fog and > stiffness. This is gotten worse each day until this morning it took me 45 > minutes just to be able to sit up and in bed and the brain fog was horrid. > I had wanted the doctor to set my pump a little higher and P.T. yesterday > but he said no because he thought to hire was maybe having a rebound effect. > > I was just depressed this morning, I told my wife I am so sick of fighting > my body. When that happens it's so hard to not put a face on my a disease > PLS. You need to have something to focus on, to blame it is you against > the beast. I was so angry at the beast because it makes me so > self-centered, all I can think about is how can I survive? My wife has to > do just about everything for me. It seems like me me me and I hate it. > > The good news is that it I got much better this afternoon so maybe the > doctor was right. But I also realized once again that yelling at PLS is the > like yelling at the thunder the way our ancestors did. It gives it too much > power it's just doing what it should, destroying my Upper motor neurons. It > just is. It's so hard to remember that when you hurt and are tired of > fighting. But now I'm back again looking forward to P. T. and hoping to > move forward again. > > I will say to finish that the thing I think I hate the most, is how > self-centered your thinking gets the worse the disease gets. And I have > thought a lot about myself in the last two months. Hopefully I can think > outside myself more in the near future. > > dale > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Oh Sandy, I didn't mean it harshly! I wanted you to know what I was really talking about. Your advice wasn't bad, just didn't fit... You see that is all part of the frustration, there is so much I want to do! dale rumbleings from Dale > > > > > > Hi, won't be as long as usual (most are happy ;-), typing is still slow. > A > > week ago I had the best day that I have had since my ordeal started. It > was > > great, no brain fog and I wasn't stiff at all! I worked out and > exercised > > most of the day, the next day for my six hour P. T. I had some brain fog > and > > stiffness. This is gotten worse each day until this morning it took me > 45 > > minutes just to be able to sit up and in bed and the brain fog was > horrid. > > I had wanted the doctor to set my pump a little higher and P.T. > yesterday > > but he said no because he thought to hire was maybe having a rebound > effect. > > > > I was just depressed this morning, I told my wife I am so sick of > fighting > > my body. When that happens it's so hard to not put a face on my a > disease > > PLS. You need to have something to focus on, to blame it is you > against > > the beast. I was so angry at the beast because it makes me so > > self-centered, all I can think about is how can I survive? My wife has > to > > do just about everything for me. It seems like me me me and I hate it. > > > > The good news is that it I got much better this afternoon so maybe the > > doctor was right. But I also realized once again that yelling at PLS is > the > > like yelling at the thunder the way our ancestors did. It gives it too > much > > power it's just doing what it should, destroying my Upper motor neurons. > It > > just is. It's so hard to remember that when you hurt and are tired of > > fighting. But now I'm back again looking forward to P. T. and hoping to > > move forward again. > > > > I will say to finish that the thing I think I hate the most, is how > > self-centered your thinking gets the worse the disease gets. And I have > > thought a lot about myself in the last two months. Hopefully I can > think > > outside myself more in the near future. > > > > dale > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Good deal Dale, I had a real bad day yesterday, I guess you would call it a pitty party, with all that has been going on. I can relate to the frustration. Have a great day, Sandy rumbleings from Dale > > > > > > Hi, won't be as long as usual (most are happy ;-), typing is still slow. > A > > week ago I had the best day that I have had since my ordeal started. It > was > > great, no brain fog and I wasn't stiff at all! I worked out and > exercised > > most of the day, the next day for my six hour P. T. I had some brain fog > and > > stiffness. This is gotten worse each day until this morning it took me > 45 > > minutes just to be able to sit up and in bed and the brain fog was > horrid. > > I had wanted the doctor to set my pump a little higher and P.T. > yesterday > > but he said no because he thought to hire was maybe having a rebound > effect. > > > > I was just depressed this morning, I told my wife I am so sick of > fighting > > my body. When that happens it's so hard to not put a face on my a > disease > > PLS. You need to have something to focus on, to blame it is you > against > > the beast. I was so angry at the beast because it makes me so > > self-centered, all I can think about is how can I survive? My wife has > to > > do just about everything for me. It seems like me me me and I hate it. > > > > The good news is that it I got much better this afternoon so maybe the > > doctor was right. But I also realized once again that yelling at PLS is > the > > like yelling at the thunder the way our ancestors did. It gives it too > much > > power it's just doing what it should, destroying my Upper motor neurons. > It > > just is. It's so hard to remember that when you hurt and are tired of > > fighting. But now I'm back again looking forward to P. T. and hoping to > > move forward again. > > > > I will say to finish that the thing I think I hate the most, is how > > self-centered your thinking gets the worse the disease gets. And I have > > thought a lot about myself in the last two months. Hopefully I can > think > > outside myself more in the near future. > > > > dale > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 Dale, Someone much wiser than I once told me: " When you feel depressed, down, angry at the world, angry at what life has delt you - - - find someone to help, no matter how small, just go help someone else do anything. " It works. Vaughn Quote Link to comment Share on other sites More sharing options...
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