Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 Especially in light of how seriously ill some of you are...but I just don't know where else to go. I haven't been dx yet...still in limbo... It's the fatigue...I used to have it on weekends...then after work...now, I can't get past 1pm without thinking to myself, " I've got to make it, just a few more hours, just a few more hours " . My legs are like jelly. I went to the store, and came back. Couldn't even do my grocery shopping. And it's not like I'm sleepy, I'm not. I just lay around all day and feel just fine. But as soon as I'm active again (active being relative, I mean just doing dishes or starting to vacume) I feel like crap all over again. I don't know what to say to people when they ask me what's wrong. I don't know how to explain to my co-workers while I look like a truck hit me. I don't have an *answer*, so it looks like I'm being 'lazy' or 'trying to get attention' or any number of things that go through peoples heads when someone is 'too tired' to do anything. Maybe I don't have Mito. I keep thinking maybe I have cancer or something...something they haven't found yet...What else would make me feel like this? The myoclonus is all but gone thanks to the Lamictal, so that's a relief. But two years ago I was going to the gym 3x a week, dancing once a week, pottery class once a week, girls- night every Thursday, you couldn't keep me still! Now I'm a shadow. And I don't know what to do. I feel alone in this. Thank you for letting me vent here. ~Kathy~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2004 Report Share Posted September 6, 2004 Kathy Welcome to the group. I can identify with the fatigue. Keep looking and hoping that eventually you will have an answer. It took me 15 years of frustration. I was so tired of the professionals who said that it was all in my head. Be prepared if you haven't already gotten this diagnosis. Just the fact that the Lamictal helped with the myoclonus says something neuromuscular is going on. Don't worry about your co-workers. You know in your heart that something is wrong and eventually they will get to the place you are, or at least some of them. Please find ways to reserve the energy you have. I have used a scooter for 11 years and now have a power wheelchair. I can still walk around the house, because I have used what I need to in order to reserve the energy. I wash dishes from a stool. Sit on a chair to load the washer and dryer. Sit to cook and prepare food (I guess that should be the other way around). I know it is hard to make the move to assisstive equipment. I started by using the grocery store scooters. I could no longer do the shopping and had to shop. I was a single mom who now lives alone. I have to be able to do these things. You can turn around the feelings of being lazy, by trying to figure out new ways of doing things. This can then give you a feeling of satisfaction - I mastered this need. Please vent when you have the need, as emotional and psychological stress can be as bad as physical stress on the mito body. Again, welcome to the group. I hope you don't find this post pushy, but you sound so much like me. I was going to prove to the world that I could be the best single mom around. Hugs, laurie > > Reply-To: > Date: Mon, 06 Sep 2004 04:26:52 -0000 > To: > Subject: Don't mean to complain > > > Especially in light of how seriously ill some of you are...but I > just don't know where else to go. > > I haven't been dx yet...still in limbo... > > It's the fatigue...I used to have it on weekends...then after > work...now, I can't get past 1pm without thinking to myself, " I've > got to make it, just a few more hours, just a few more hours " . > > My legs are like jelly. I went to the store, and came back. > Couldn't even do my grocery shopping. > > And it's not like I'm sleepy, I'm not. I just lay around all day > and feel just fine. But as soon as I'm active again (active being > relative, I mean just doing dishes or starting to vacume) I feel > like crap all over again. > > I don't know what to say to people when they ask me what's wrong. I > don't know how to explain to my co-workers while I look like a truck > hit me. I don't have an *answer*, so it looks like I'm being 'lazy' > or 'trying to get attention' or any number of things that go through > peoples heads when someone is 'too tired' to do anything. > > Maybe I don't have Mito. I keep thinking maybe I have cancer or > something...something they haven't found yet...What else would make > me feel like this? The myoclonus is all but gone thanks to the > Lamictal, so that's a relief. But two years ago I was going to the > gym 3x a week, dancing once a week, pottery class once a week, girls- > night every Thursday, you couldn't keep me still! > > Now I'm a shadow. > > And I don't know what to do. I feel alone in this. > > Thank you for letting me vent here. > > ~Kathy~ > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2004 Report Share Posted September 6, 2004 Kathy Welcome to the group. I can identify with the fatigue. Keep looking and hoping that eventually you will have an answer. It took me 15 years of frustration. I was so tired of the professionals who said that it was all in my head. Be prepared if you haven't already gotten this diagnosis. Just the fact that the Lamictal helped with the myoclonus says something neuromuscular is going on. Don't worry about your co-workers. You know in your heart that something is wrong and eventually they will get to the place you are, or at least some of them. Please find ways to reserve the energy you have. I have used a scooter for 11 years and now have a power wheelchair. I can still walk around the house, because I have used what I need to in order to reserve the energy. I wash dishes from a stool. Sit on a chair to load the washer and dryer. Sit to cook and prepare food (I guess that should be the other way around). I know it is hard to make the move to assisstive equipment. I started by using the grocery store scooters. I could no longer do the shopping and had to shop. I was a single mom who now lives alone. I have to be able to do these things. You can turn around the feelings of being lazy, by trying to figure out new ways of doing things. This can then give you a feeling of satisfaction - I mastered this need. Please vent when you have the need, as emotional and psychological stress can be as bad as physical stress on the mito body. Again, welcome to the group. I hope you don't find this post pushy, but you sound so much like me. I was going to prove to the world that I could be the best single mom around. Hugs, laurie > > Reply-To: > Date: Mon, 06 Sep 2004 04:26:52 -0000 > To: > Subject: Don't mean to complain > > > Especially in light of how seriously ill some of you are...but I > just don't know where else to go. > > I haven't been dx yet...still in limbo... > > It's the fatigue...I used to have it on weekends...then after > work...now, I can't get past 1pm without thinking to myself, " I've > got to make it, just a few more hours, just a few more hours " . > > My legs are like jelly. I went to the store, and came back. > Couldn't even do my grocery shopping. > > And it's not like I'm sleepy, I'm not. I just lay around all day > and feel just fine. But as soon as I'm active again (active being > relative, I mean just doing dishes or starting to vacume) I feel > like crap all over again. > > I don't know what to say to people when they ask me what's wrong. I > don't know how to explain to my co-workers while I look like a truck > hit me. I don't have an *answer*, so it looks like I'm being 'lazy' > or 'trying to get attention' or any number of things that go through > peoples heads when someone is 'too tired' to do anything. > > Maybe I don't have Mito. I keep thinking maybe I have cancer or > something...something they haven't found yet...What else would make > me feel like this? The myoclonus is all but gone thanks to the > Lamictal, so that's a relief. But two years ago I was going to the > gym 3x a week, dancing once a week, pottery class once a week, girls- > night every Thursday, you couldn't keep me still! > > Now I'm a shadow. > > And I don't know what to do. I feel alone in this. > > Thank you for letting me vent here. > > ~Kathy~ > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2004 Report Share Posted September 6, 2004 Kathy Welcome to the group. I can identify with the fatigue. Keep looking and hoping that eventually you will have an answer. It took me 15 years of frustration. I was so tired of the professionals who said that it was all in my head. Be prepared if you haven't already gotten this diagnosis. Just the fact that the Lamictal helped with the myoclonus says something neuromuscular is going on. Don't worry about your co-workers. You know in your heart that something is wrong and eventually they will get to the place you are, or at least some of them. Please find ways to reserve the energy you have. I have used a scooter for 11 years and now have a power wheelchair. I can still walk around the house, because I have used what I need to in order to reserve the energy. I wash dishes from a stool. Sit on a chair to load the washer and dryer. Sit to cook and prepare food (I guess that should be the other way around). I know it is hard to make the move to assisstive equipment. I started by using the grocery store scooters. I could no longer do the shopping and had to shop. I was a single mom who now lives alone. I have to be able to do these things. You can turn around the feelings of being lazy, by trying to figure out new ways of doing things. This can then give you a feeling of satisfaction - I mastered this need. Please vent when you have the need, as emotional and psychological stress can be as bad as physical stress on the mito body. Again, welcome to the group. I hope you don't find this post pushy, but you sound so much like me. I was going to prove to the world that I could be the best single mom around. Hugs, laurie > > Reply-To: > Date: Mon, 06 Sep 2004 04:26:52 -0000 > To: > Subject: Don't mean to complain > > > Especially in light of how seriously ill some of you are...but I > just don't know where else to go. > > I haven't been dx yet...still in limbo... > > It's the fatigue...I used to have it on weekends...then after > work...now, I can't get past 1pm without thinking to myself, " I've > got to make it, just a few more hours, just a few more hours " . > > My legs are like jelly. I went to the store, and came back. > Couldn't even do my grocery shopping. > > And it's not like I'm sleepy, I'm not. I just lay around all day > and feel just fine. But as soon as I'm active again (active being > relative, I mean just doing dishes or starting to vacume) I feel > like crap all over again. > > I don't know what to say to people when they ask me what's wrong. I > don't know how to explain to my co-workers while I look like a truck > hit me. I don't have an *answer*, so it looks like I'm being 'lazy' > or 'trying to get attention' or any number of things that go through > peoples heads when someone is 'too tired' to do anything. > > Maybe I don't have Mito. I keep thinking maybe I have cancer or > something...something they haven't found yet...What else would make > me feel like this? The myoclonus is all but gone thanks to the > Lamictal, so that's a relief. But two years ago I was going to the > gym 3x a week, dancing once a week, pottery class once a week, girls- > night every Thursday, you couldn't keep me still! > > Now I'm a shadow. > > And I don't know what to do. I feel alone in this. > > Thank you for letting me vent here. > > ~Kathy~ > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
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