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Frustration with a friend'

T

TinyGreenTurtles

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>maelstrom</b></i>

Hi Piper - I definitely see where you are coming from now. I can only imagine that it would be seriously frustrating to deal with that "well if you just tried harder" attitude when you already are trying really hard. The difference with my husband is that he is not trying hard... he's pretty much non-compliant for any treatments, other than exercise. His attitude tends to be "well I'm just going to get sick in the end anyway, so what's the point in bothering with these therapies?" That type of pessimism drives me crazy! I have pretty much given up arguing with him about it, and I try to respect his feeling on CF, realizing that he's been dealing with this his whole life.



That said, I really would like to change his mind, and I've been trying to think of ways to do this without just annoying him. I actually started putting together a website with information on all the newest therapies.. supposed to be a "scientific" way of looking at things with an optimistic perspective, since he also is an engineer who likes to look at numbers and facts. After reading your post and the responses to it that optimism can be really frustrating to CFers, I sorta freaked out that maybe the website is a bad idea and will just annoy people instead of helping. I hope not.



Anyway sorry to get off topic - in regards to your initial post, I also noticed that the 'optimist' was answering in response to someone being surprised at your age. I've had similar experiences - recently after doing a CFF fundraiser, we mentioned to someone we'd just met that that's where we'd been - this person started going on about how CF is such a horrible disease and it's so sad etc etc etc. We both kept quiet but in my head I got angry and wanted to tell her that there's been so much progress she doesn't know about. Same thing happened in my physiology class when the professor was talking about CF as a childhood disease and that people don't live into their teens... again I got mad and wanted to tell him he didn't know what he was talking about. (I didn't say anything.) I think this reaction is because these people who don't necessarily know anything about CF other than it being a fatal disease often express their thoughts in a way that it strikes a chord with all the fears that I try to surpress. "What do you mean it's a horrible disease?? My husband isn't going to die any time soon, so whatever!!!" Ha. It's just a defensive response. So, maybe your friend felt something similar, and her defensive reaction was to shoot back that people with CF can live just fine if they do these new treatments. I don't know. Just my perspective, again - sorry for being so long winded!</end quote></div>


I understand that, too. I prefer people to be educated about it, and not to assume that it's over as soon as it starts, if that makes sense. It just worries me when people I'm really close to talk like I'm going to live forever. I just want the people REALLY close to me, like my husband, siblings, best friends, to understand that just because I do everything I'm supposed to doesn't guarantee I will be fine forever. I'm asking way too much to want both, I know. But I do. lol
 
T

TinyGreenTurtles

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>maelstrom</b></i>

Hi Piper - I definitely see where you are coming from now. I can only imagine that it would be seriously frustrating to deal with that "well if you just tried harder" attitude when you already are trying really hard. The difference with my husband is that he is not trying hard... he's pretty much non-compliant for any treatments, other than exercise. His attitude tends to be "well I'm just going to get sick in the end anyway, so what's the point in bothering with these therapies?" That type of pessimism drives me crazy! I have pretty much given up arguing with him about it, and I try to respect his feeling on CF, realizing that he's been dealing with this his whole life.



That said, I really would like to change his mind, and I've been trying to think of ways to do this without just annoying him. I actually started putting together a website with information on all the newest therapies.. supposed to be a "scientific" way of looking at things with an optimistic perspective, since he also is an engineer who likes to look at numbers and facts. After reading your post and the responses to it that optimism can be really frustrating to CFers, I sorta freaked out that maybe the website is a bad idea and will just annoy people instead of helping. I hope not.



Anyway sorry to get off topic - in regards to your initial post, I also noticed that the 'optimist' was answering in response to someone being surprised at your age. I've had similar experiences - recently after doing a CFF fundraiser, we mentioned to someone we'd just met that that's where we'd been - this person started going on about how CF is such a horrible disease and it's so sad etc etc etc. We both kept quiet but in my head I got angry and wanted to tell her that there's been so much progress she doesn't know about. Same thing happened in my physiology class when the professor was talking about CF as a childhood disease and that people don't live into their teens... again I got mad and wanted to tell him he didn't know what he was talking about. (I didn't say anything.) I think this reaction is because these people who don't necessarily know anything about CF other than it being a fatal disease often express their thoughts in a way that it strikes a chord with all the fears that I try to surpress. "What do you mean it's a horrible disease?? My husband isn't going to die any time soon, so whatever!!!" Ha. It's just a defensive response. So, maybe your friend felt something similar, and her defensive reaction was to shoot back that people with CF can live just fine if they do these new treatments. I don't know. Just my perspective, again - sorry for being so long winded!</end quote></div>


I understand that, too. I prefer people to be educated about it, and not to assume that it's over as soon as it starts, if that makes sense. It just worries me when people I'm really close to talk like I'm going to live forever. I just want the people REALLY close to me, like my husband, siblings, best friends, to understand that just because I do everything I'm supposed to doesn't guarantee I will be fine forever. I'm asking way too much to want both, I know. But I do. lol
 
T

TinyGreenTurtles

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>maelstrom</b></i>

Hi Piper - I definitely see where you are coming from now. I can only imagine that it would be seriously frustrating to deal with that "well if you just tried harder" attitude when you already are trying really hard. The difference with my husband is that he is not trying hard... he's pretty much non-compliant for any treatments, other than exercise. His attitude tends to be "well I'm just going to get sick in the end anyway, so what's the point in bothering with these therapies?" That type of pessimism drives me crazy! I have pretty much given up arguing with him about it, and I try to respect his feeling on CF, realizing that he's been dealing with this his whole life.



That said, I really would like to change his mind, and I've been trying to think of ways to do this without just annoying him. I actually started putting together a website with information on all the newest therapies.. supposed to be a "scientific" way of looking at things with an optimistic perspective, since he also is an engineer who likes to look at numbers and facts. After reading your post and the responses to it that optimism can be really frustrating to CFers, I sorta freaked out that maybe the website is a bad idea and will just annoy people instead of helping. I hope not.



Anyway sorry to get off topic - in regards to your initial post, I also noticed that the 'optimist' was answering in response to someone being surprised at your age. I've had similar experiences - recently after doing a CFF fundraiser, we mentioned to someone we'd just met that that's where we'd been - this person started going on about how CF is such a horrible disease and it's so sad etc etc etc. We both kept quiet but in my head I got angry and wanted to tell her that there's been so much progress she doesn't know about. Same thing happened in my physiology class when the professor was talking about CF as a childhood disease and that people don't live into their teens... again I got mad and wanted to tell him he didn't know what he was talking about. (I didn't say anything.) I think this reaction is because these people who don't necessarily know anything about CF other than it being a fatal disease often express their thoughts in a way that it strikes a chord with all the fears that I try to surpress. "What do you mean it's a horrible disease?? My husband isn't going to die any time soon, so whatever!!!" Ha. It's just a defensive response. So, maybe your friend felt something similar, and her defensive reaction was to shoot back that people with CF can live just fine if they do these new treatments. I don't know. Just my perspective, again - sorry for being so long winded!</end quote></div>


I understand that, too. I prefer people to be educated about it, and not to assume that it's over as soon as it starts, if that makes sense. It just worries me when people I'm really close to talk like I'm going to live forever. I just want the people REALLY close to me, like my husband, siblings, best friends, to understand that just because I do everything I'm supposed to doesn't guarantee I will be fine forever. I'm asking way too much to want both, I know. But I do. lol
 
T

TinyGreenTurtles

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>maelstrom</b></i>

Hi Piper - I definitely see where you are coming from now. I can only imagine that it would be seriously frustrating to deal with that "well if you just tried harder" attitude when you already are trying really hard. The difference with my husband is that he is not trying hard... he's pretty much non-compliant for any treatments, other than exercise. His attitude tends to be "well I'm just going to get sick in the end anyway, so what's the point in bothering with these therapies?" That type of pessimism drives me crazy! I have pretty much given up arguing with him about it, and I try to respect his feeling on CF, realizing that he's been dealing with this his whole life.



That said, I really would like to change his mind, and I've been trying to think of ways to do this without just annoying him. I actually started putting together a website with information on all the newest therapies.. supposed to be a "scientific" way of looking at things with an optimistic perspective, since he also is an engineer who likes to look at numbers and facts. After reading your post and the responses to it that optimism can be really frustrating to CFers, I sorta freaked out that maybe the website is a bad idea and will just annoy people instead of helping. I hope not.



Anyway sorry to get off topic - in regards to your initial post, I also noticed that the 'optimist' was answering in response to someone being surprised at your age. I've had similar experiences - recently after doing a CFF fundraiser, we mentioned to someone we'd just met that that's where we'd been - this person started going on about how CF is such a horrible disease and it's so sad etc etc etc. We both kept quiet but in my head I got angry and wanted to tell her that there's been so much progress she doesn't know about. Same thing happened in my physiology class when the professor was talking about CF as a childhood disease and that people don't live into their teens... again I got mad and wanted to tell him he didn't know what he was talking about. (I didn't say anything.) I think this reaction is because these people who don't necessarily know anything about CF other than it being a fatal disease often express their thoughts in a way that it strikes a chord with all the fears that I try to surpress. "What do you mean it's a horrible disease?? My husband isn't going to die any time soon, so whatever!!!" Ha. It's just a defensive response. So, maybe your friend felt something similar, and her defensive reaction was to shoot back that people with CF can live just fine if they do these new treatments. I don't know. Just my perspective, again - sorry for being so long winded!</end quote>


I understand that, too. I prefer people to be educated about it, and not to assume that it's over as soon as it starts, if that makes sense. It just worries me when people I'm really close to talk like I'm going to live forever. I just want the people REALLY close to me, like my husband, siblings, best friends, to understand that just because I do everything I'm supposed to doesn't guarantee I will be fine forever. I'm asking way too much to want both, I know. But I do. lol
 
T

TinyGreenTurtles

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>maelstrom</b></i>
<br />
<br />Hi Piper - I definitely see where you are coming from now. I can only imagine that it would be seriously frustrating to deal with that "well if you just tried harder" attitude when you already are trying really hard. The difference with my husband is that he is not trying hard... he's pretty much non-compliant for any treatments, other than exercise. His attitude tends to be "well I'm just going to get sick in the end anyway, so what's the point in bothering with these therapies?" That type of pessimism drives me crazy! I have pretty much given up arguing with him about it, and I try to respect his feeling on CF, realizing that he's been dealing with this his whole life.
<br />
<br />
<br />
<br />That said, I really would like to change his mind, and I've been trying to think of ways to do this without just annoying him. I actually started putting together a website with information on all the newest therapies.. supposed to be a "scientific" way of looking at things with an optimistic perspective, since he also is an engineer who likes to look at numbers and facts. After reading your post and the responses to it that optimism can be really frustrating to CFers, I sorta freaked out that maybe the website is a bad idea and will just annoy people instead of helping. I hope not.
<br />
<br />
<br />
<br />Anyway sorry to get off topic - in regards to your initial post, I also noticed that the 'optimist' was answering in response to someone being surprised at your age. I've had similar experiences - recently after doing a CFF fundraiser, we mentioned to someone we'd just met that that's where we'd been - this person started going on about how CF is such a horrible disease and it's so sad etc etc etc. We both kept quiet but in my head I got angry and wanted to tell her that there's been so much progress she doesn't know about. Same thing happened in my physiology class when the professor was talking about CF as a childhood disease and that people don't live into their teens... again I got mad and wanted to tell him he didn't know what he was talking about. (I didn't say anything.) I think this reaction is because these people who don't necessarily know anything about CF other than it being a fatal disease often express their thoughts in a way that it strikes a chord with all the fears that I try to surpress. "What do you mean it's a horrible disease?? My husband isn't going to die any time soon, so whatever!!!" Ha. It's just a defensive response. So, maybe your friend felt something similar, and her defensive reaction was to shoot back that people with CF can live just fine if they do these new treatments. I don't know. Just my perspective, again - sorry for being so long winded!</end quote>
<br />
<br />
<br />I understand that, too. I prefer people to be educated about it, and not to assume that it's over as soon as it starts, if that makes sense. It just worries me when people I'm really close to talk like I'm going to live forever. I just want the people REALLY close to me, like my husband, siblings, best friends, to understand that just because I do everything I'm supposed to doesn't guarantee I will be fine forever. I'm asking way too much to want both, I know. But I do. lol
<br />
<br />
 
J

jamie6girl

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SaltyAndSweet</b></i>

Maelstrom, I am learning a lot from you today! Thank you. Personally, being a blogger myself, I really like your idea of putting together a website about new therapies. If you get really geeky/technical about it, I am sure your engineer husband may show interest in it... (I'm an engineer too!) But aside from your husband and I, no doubt a site like that would help a lot of other people too. I think you should go for it! As far as being annoying, don't push anything on him or your readers. Try to stick to the facts and allow the reader to make an educated decision. Let your husband know what you are up to and if he is mentally ready, he will listen. Also try to not discredit readers if their way isn't your way.



The hardest thing I am finding as my health declines is the struggle to balance happiness and CF. CF is becoming a much larger influence in my life, and as that happens there is less time in the day to spend doing things that make me happy. I can't find a way to make the two of them coexist. To me it is that fine line of quality of life vs. therapy. I am in a constant struggle to find it and I know I am not the only one here. Also, I hope I don't upset anyone here by saying this, but just because there are therapies to help us live longer, doesn't change the fact that this IS a horrible disease to deal/live with. Yes we are living longer, but we have to give up a lot to do so. I hope that may shed a little light on my frustrations at least.</end quote></div>
<br><br>I feel you! I have made treatments a priority, so a lot of times, I have to give up going places , because I know if I go somewhere righta fter work, I'm not going to do my stuff when I get home like I'm supposed to. So it's work 8 + hours a day, go home, do treatment, eat, try to go walking or fit in some physical activity, get ready for the next day, lay out clothes, bathe, do another treatment, and then go to bed. Then wake up and do more treatments, go back to work, repeat.
 
J

jamie6girl

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SaltyAndSweet</b></i>

Maelstrom, I am learning a lot from you today! Thank you. Personally, being a blogger myself, I really like your idea of putting together a website about new therapies. If you get really geeky/technical about it, I am sure your engineer husband may show interest in it... (I'm an engineer too!) But aside from your husband and I, no doubt a site like that would help a lot of other people too. I think you should go for it! As far as being annoying, don't push anything on him or your readers. Try to stick to the facts and allow the reader to make an educated decision. Let your husband know what you are up to and if he is mentally ready, he will listen. Also try to not discredit readers if their way isn't your way.



The hardest thing I am finding as my health declines is the struggle to balance happiness and CF. CF is becoming a much larger influence in my life, and as that happens there is less time in the day to spend doing things that make me happy. I can't find a way to make the two of them coexist. To me it is that fine line of quality of life vs. therapy. I am in a constant struggle to find it and I know I am not the only one here. Also, I hope I don't upset anyone here by saying this, but just because there are therapies to help us live longer, doesn't change the fact that this IS a horrible disease to deal/live with. Yes we are living longer, but we have to give up a lot to do so. I hope that may shed a little light on my frustrations at least.</end quote></div>
<br><br>I feel you! I have made treatments a priority, so a lot of times, I have to give up going places , because I know if I go somewhere righta fter work, I'm not going to do my stuff when I get home like I'm supposed to. So it's work 8 + hours a day, go home, do treatment, eat, try to go walking or fit in some physical activity, get ready for the next day, lay out clothes, bathe, do another treatment, and then go to bed. Then wake up and do more treatments, go back to work, repeat.
 
J

jamie6girl

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SaltyAndSweet</b></i>

Maelstrom, I am learning a lot from you today! Thank you. Personally, being a blogger myself, I really like your idea of putting together a website about new therapies. If you get really geeky/technical about it, I am sure your engineer husband may show interest in it... (I'm an engineer too!) But aside from your husband and I, no doubt a site like that would help a lot of other people too. I think you should go for it! As far as being annoying, don't push anything on him or your readers. Try to stick to the facts and allow the reader to make an educated decision. Let your husband know what you are up to and if he is mentally ready, he will listen. Also try to not discredit readers if their way isn't your way.



The hardest thing I am finding as my health declines is the struggle to balance happiness and CF. CF is becoming a much larger influence in my life, and as that happens there is less time in the day to spend doing things that make me happy. I can't find a way to make the two of them coexist. To me it is that fine line of quality of life vs. therapy. I am in a constant struggle to find it and I know I am not the only one here. Also, I hope I don't upset anyone here by saying this, but just because there are therapies to help us live longer, doesn't change the fact that this IS a horrible disease to deal/live with. Yes we are living longer, but we have to give up a lot to do so. I hope that may shed a little light on my frustrations at least.</end quote></div>
<br><br>I feel you! I have made treatments a priority, so a lot of times, I have to give up going places , because I know if I go somewhere righta fter work, I'm not going to do my stuff when I get home like I'm supposed to. So it's work 8 + hours a day, go home, do treatment, eat, try to go walking or fit in some physical activity, get ready for the next day, lay out clothes, bathe, do another treatment, and then go to bed. Then wake up and do more treatments, go back to work, repeat.
 
J

jamie6girl

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SaltyAndSweet</b></i>

Maelstrom, I am learning a lot from you today! Thank you. Personally, being a blogger myself, I really like your idea of putting together a website about new therapies. If you get really geeky/technical about it, I am sure your engineer husband may show interest in it... (I'm an engineer too!) But aside from your husband and I, no doubt a site like that would help a lot of other people too. I think you should go for it! As far as being annoying, don't push anything on him or your readers. Try to stick to the facts and allow the reader to make an educated decision. Let your husband know what you are up to and if he is mentally ready, he will listen. Also try to not discredit readers if their way isn't your way.



The hardest thing I am finding as my health declines is the struggle to balance happiness and CF. CF is becoming a much larger influence in my life, and as that happens there is less time in the day to spend doing things that make me happy. I can't find a way to make the two of them coexist. To me it is that fine line of quality of life vs. therapy. I am in a constant struggle to find it and I know I am not the only one here. Also, I hope I don't upset anyone here by saying this, but just because there are therapies to help us live longer, doesn't change the fact that this IS a horrible disease to deal/live with. Yes we are living longer, but we have to give up a lot to do so. I hope that may shed a little light on my frustrations at least.</end quote>
<br><br>I feel you! I have made treatments a priority, so a lot of times, I have to give up going places , because I know if I go somewhere righta fter work, I'm not going to do my stuff when I get home like I'm supposed to. So it's work 8 + hours a day, go home, do treatment, eat, try to go walking or fit in some physical activity, get ready for the next day, lay out clothes, bathe, do another treatment, and then go to bed. Then wake up and do more treatments, go back to work, repeat.
 
J

jamie6girl

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SaltyAndSweet</b></i>

Maelstrom, I am learning a lot from you today! Thank you. Personally, being a blogger myself, I really like your idea of putting together a website about new therapies. If you get really geeky/technical about it, I am sure your engineer husband may show interest in it... (I'm an engineer too!) But aside from your husband and I, no doubt a site like that would help a lot of other people too. I think you should go for it! As far as being annoying, don't push anything on him or your readers. Try to stick to the facts and allow the reader to make an educated decision. Let your husband know what you are up to and if he is mentally ready, he will listen. Also try to not discredit readers if their way isn't your way.



The hardest thing I am finding as my health declines is the struggle to balance happiness and CF. CF is becoming a much larger influence in my life, and as that happens there is less time in the day to spend doing things that make me happy. I can't find a way to make the two of them coexist. To me it is that fine line of quality of life vs. therapy. I am in a constant struggle to find it and I know I am not the only one here. Also, I hope I don't upset anyone here by saying this, but just because there are therapies to help us live longer, doesn't change the fact that this IS a horrible disease to deal/live with. Yes we are living longer, but we have to give up a lot to do so. I hope that may shed a little light on my frustrations at least.</end quote>
<br><br>I feel you! I have made treatments a priority, so a lot of times, I have to give up going places , because I know if I go somewhere righta fter work, I'm not going to do my stuff when I get home like I'm supposed to. So it's work 8 + hours a day, go home, do treatment, eat, try to go walking or fit in some physical activity, get ready for the next day, lay out clothes, bathe, do another treatment, and then go to bed. Then wake up and do more treatments, go back to work, repeat.
 
M

maelstrom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SaltyAndSweet</b></i>
Also, I hope I don't upset anyone here by saying this, but just because there are therapies to help us live longer, doesn't change the fact that this IS a horrible disease to deal/live with. Yes we are living longer, but we have to give up a lot to do so. I hope that may shed a little light on my frustrations at least.</end quote></div>

That's a very good point... something about it clicked with me just now, so I feel like I understand a lot more. I definitely see how some overly optimistic viewpoints could be seen as trivializing the whole disease, and I will definitely try to avoid that. I know that you all go through so much that I will never understand, and I respect the strength and courage that it takes to face all these challenges. My husband, despite sometimes frustrating me with his lax attitude, still manages to impress me every day. I am inspired by what he has done with his life and how he has refused to let CF stop him.

Thanks everyone for the thoughtful discussion!
 
M

maelstrom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SaltyAndSweet</b></i>
Also, I hope I don't upset anyone here by saying this, but just because there are therapies to help us live longer, doesn't change the fact that this IS a horrible disease to deal/live with. Yes we are living longer, but we have to give up a lot to do so. I hope that may shed a little light on my frustrations at least.</end quote></div>

That's a very good point... something about it clicked with me just now, so I feel like I understand a lot more. I definitely see how some overly optimistic viewpoints could be seen as trivializing the whole disease, and I will definitely try to avoid that. I know that you all go through so much that I will never understand, and I respect the strength and courage that it takes to face all these challenges. My husband, despite sometimes frustrating me with his lax attitude, still manages to impress me every day. I am inspired by what he has done with his life and how he has refused to let CF stop him.

Thanks everyone for the thoughtful discussion!
 
M

maelstrom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SaltyAndSweet</b></i>
Also, I hope I don't upset anyone here by saying this, but just because there are therapies to help us live longer, doesn't change the fact that this IS a horrible disease to deal/live with. Yes we are living longer, but we have to give up a lot to do so. I hope that may shed a little light on my frustrations at least.</end quote></div>

That's a very good point... something about it clicked with me just now, so I feel like I understand a lot more. I definitely see how some overly optimistic viewpoints could be seen as trivializing the whole disease, and I will definitely try to avoid that. I know that you all go through so much that I will never understand, and I respect the strength and courage that it takes to face all these challenges. My husband, despite sometimes frustrating me with his lax attitude, still manages to impress me every day. I am inspired by what he has done with his life and how he has refused to let CF stop him.

Thanks everyone for the thoughtful discussion!
 
M

maelstrom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SaltyAndSweet</b></i>
Also, I hope I don't upset anyone here by saying this, but just because there are therapies to help us live longer, doesn't change the fact that this IS a horrible disease to deal/live with. Yes we are living longer, but we have to give up a lot to do so. I hope that may shed a little light on my frustrations at least.</end quote>

That's a very good point... something about it clicked with me just now, so I feel like I understand a lot more. I definitely see how some overly optimistic viewpoints could be seen as trivializing the whole disease, and I will definitely try to avoid that. I know that you all go through so much that I will never understand, and I respect the strength and courage that it takes to face all these challenges. My husband, despite sometimes frustrating me with his lax attitude, still manages to impress me every day. I am inspired by what he has done with his life and how he has refused to let CF stop him.

Thanks everyone for the thoughtful discussion!
 
M

maelstrom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SaltyAndSweet</b></i>
<br /> Also, I hope I don't upset anyone here by saying this, but just because there are therapies to help us live longer, doesn't change the fact that this IS a horrible disease to deal/live with. Yes we are living longer, but we have to give up a lot to do so. I hope that may shed a little light on my frustrations at least.</end quote>
<br />
<br />That's a very good point... something about it clicked with me just now, so I feel like I understand a lot more. I definitely see how some overly optimistic viewpoints could be seen as trivializing the whole disease, and I will definitely try to avoid that. I know that you all go through so much that I will never understand, and I respect the strength and courage that it takes to face all these challenges. My husband, despite sometimes frustrating me with his lax attitude, still manages to impress me every day. I am inspired by what he has done with his life and how he has refused to let CF stop him.
<br />
<br />Thanks everyone for the thoughtful discussion!
<br />
 
F

Faust

New member
I think one thing is very important to keep in mind when dealing with other people. It's perspective. As long as someone is being sincere, they don't know much about the disease besides it's lethality, I would never get upset with them. If we work full time and take care of ourselves properly, we put in at least 80 hours a week just to earn a living AND survive with some quality of life. That is if you don't have children. If you do, it goes up from there. If I have a casual conversation with someone new and my disease comes up, and they know how bad it is but aren't fully informed and they are surprised of my condition and age...I just tell them i spend 80+ hours a week staying the way I am, and continuing to breath. Usually after that, they have a ton of respect for my hard word, mostly something they could never comprehend, and then drop it after that. I don't blame people for their questions or comments, as long as they are being sincere and not being an *****.
 
F

Faust

New member
I think one thing is very important to keep in mind when dealing with other people. It's perspective. As long as someone is being sincere, they don't know much about the disease besides it's lethality, I would never get upset with them. If we work full time and take care of ourselves properly, we put in at least 80 hours a week just to earn a living AND survive with some quality of life. That is if you don't have children. If you do, it goes up from there. If I have a casual conversation with someone new and my disease comes up, and they know how bad it is but aren't fully informed and they are surprised of my condition and age...I just tell them i spend 80+ hours a week staying the way I am, and continuing to breath. Usually after that, they have a ton of respect for my hard word, mostly something they could never comprehend, and then drop it after that. I don't blame people for their questions or comments, as long as they are being sincere and not being an *****.
 
F

Faust

New member
I think one thing is very important to keep in mind when dealing with other people. It's perspective. As long as someone is being sincere, they don't know much about the disease besides it's lethality, I would never get upset with them. If we work full time and take care of ourselves properly, we put in at least 80 hours a week just to earn a living AND survive with some quality of life. That is if you don't have children. If you do, it goes up from there. If I have a casual conversation with someone new and my disease comes up, and they know how bad it is but aren't fully informed and they are surprised of my condition and age...I just tell them i spend 80+ hours a week staying the way I am, and continuing to breath. Usually after that, they have a ton of respect for my hard word, mostly something they could never comprehend, and then drop it after that. I don't blame people for their questions or comments, as long as they are being sincere and not being an *****.
 
F

Faust

New member
I think one thing is very important to keep in mind when dealing with other people. It's perspective. As long as someone is being sincere, they don't know much about the disease besides it's lethality, I would never get upset with them. If we work full time and take care of ourselves properly, we put in at least 80 hours a week just to earn a living AND survive with some quality of life. That is if you don't have children. If you do, it goes up from there. If I have a casual conversation with someone new and my disease comes up, and they know how bad it is but aren't fully informed and they are surprised of my condition and age...I just tell them i spend 80+ hours a week staying the way I am, and continuing to breath. Usually after that, they have a ton of respect for my hard word, mostly something they could never comprehend, and then drop it after that. I don't blame people for their questions or comments, as long as they are being sincere and not being an *****.
 
F

Faust

New member
I think one thing is very important to keep in mind when dealing with other people. It's perspective. As long as someone is being sincere, they don't know much about the disease besides it's lethality, I would never get upset with them. If we work full time and take care of ourselves properly, we put in at least 80 hours a week just to earn a living AND survive with some quality of life. That is if you don't have children. If you do, it goes up from there. If I have a casual conversation with someone new and my disease comes up, and they know how bad it is but aren't fully informed and they are surprised of my condition and age...I just tell them i spend 80+ hours a week staying the way I am, and continuing to breath. Usually after that, they have a ton of respect for my hard word, mostly something they could never comprehend, and then drop it after that. I don't blame people for their questions or comments, as long as they are being sincere and not being an *****.
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