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Frustration with a friend'

M

maelstrom

New member
Hmm. very interesting to read all your perspectives on this. I guess I am one of those optimists that annoy you... oops... ha. But I think it's the way TinyGreenTurtles describes her husband - it's a defense mechanism. When I was first dating my husband, and found out about CF, I did a ton of research - since I'm a grad student in a medical field, that was my natural response, learn as much as possible. And I freaked out from all the scary statistics and from reading accounts of so many CF'ers who died so young. So, it's not that I don't know the reality. It's just that after deciding to pursue our relationship seriously, eventually leading to marriage, I've had periods where I got way too hung up on the scary stuff, and ended up pretty depressed. That just wasn't good for me or my husband.

So instead, I choose to focus on the hopeful side. As a scientist so I know the 'real' side but I also know about all the research and the progress that has been made. It's funny because sometimes my husband (the pessimist) accuses me of being out of touch with reality, but then I fire back and accuse him of the same thing - because he's essentially ignoring all the progress that has been made over the past couple decades. I guess I have faith in that science. I have to keep an optimistic attitude, and believe that my husband and I will have a happy life together for many years to come. Part of it is knowing that he's done pretty well health-wise so far. So I look at the stats and see how he's above average and hope for the best. I think that knowing the realities makes me much more appreciative of all the time we have together, but I also know that there's a really good chance that it won't be as much time as I want, so therefore I want to make the best of that time that we do have. And part of that is not being caught up with all the negativity, since I've done that in the past and really regret the time that I "wasted" being depressed.

I don't think I'm expressing myself very well, but I guess just wanted to offer the perspective from the other side. I mean the truth is my husband is not dying right now, no more than anyone else is, so why act like he is? Don't get me wrong - I can see why you would get annoyed. And my husband gets annoyed too, so that's why it's so interesting for me to read this. I guess my question is this - is it just the optimism from people who don't really know all the realities that annoys you, or does it make it worse when it comes from someone who does know? And how would you prefer us optimists to act? I'd appreciate any thoughts on this, to avoid further annoying my husband.... <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
M

maelstrom

New member
Hmm. very interesting to read all your perspectives on this. I guess I am one of those optimists that annoy you... oops... ha. But I think it's the way TinyGreenTurtles describes her husband - it's a defense mechanism. When I was first dating my husband, and found out about CF, I did a ton of research - since I'm a grad student in a medical field, that was my natural response, learn as much as possible. And I freaked out from all the scary statistics and from reading accounts of so many CF'ers who died so young. So, it's not that I don't know the reality. It's just that after deciding to pursue our relationship seriously, eventually leading to marriage, I've had periods where I got way too hung up on the scary stuff, and ended up pretty depressed. That just wasn't good for me or my husband.

So instead, I choose to focus on the hopeful side. As a scientist so I know the 'real' side but I also know about all the research and the progress that has been made. It's funny because sometimes my husband (the pessimist) accuses me of being out of touch with reality, but then I fire back and accuse him of the same thing - because he's essentially ignoring all the progress that has been made over the past couple decades. I guess I have faith in that science. I have to keep an optimistic attitude, and believe that my husband and I will have a happy life together for many years to come. Part of it is knowing that he's done pretty well health-wise so far. So I look at the stats and see how he's above average and hope for the best. I think that knowing the realities makes me much more appreciative of all the time we have together, but I also know that there's a really good chance that it won't be as much time as I want, so therefore I want to make the best of that time that we do have. And part of that is not being caught up with all the negativity, since I've done that in the past and really regret the time that I "wasted" being depressed.

I don't think I'm expressing myself very well, but I guess just wanted to offer the perspective from the other side. I mean the truth is my husband is not dying right now, no more than anyone else is, so why act like he is? Don't get me wrong - I can see why you would get annoyed. And my husband gets annoyed too, so that's why it's so interesting for me to read this. I guess my question is this - is it just the optimism from people who don't really know all the realities that annoys you, or does it make it worse when it comes from someone who does know? And how would you prefer us optimists to act? I'd appreciate any thoughts on this, to avoid further annoying my husband.... <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
M

maelstrom

New member
Hmm. very interesting to read all your perspectives on this. I guess I am one of those optimists that annoy you... oops... ha. But I think it's the way TinyGreenTurtles describes her husband - it's a defense mechanism. When I was first dating my husband, and found out about CF, I did a ton of research - since I'm a grad student in a medical field, that was my natural response, learn as much as possible. And I freaked out from all the scary statistics and from reading accounts of so many CF'ers who died so young. So, it's not that I don't know the reality. It's just that after deciding to pursue our relationship seriously, eventually leading to marriage, I've had periods where I got way too hung up on the scary stuff, and ended up pretty depressed. That just wasn't good for me or my husband.

So instead, I choose to focus on the hopeful side. As a scientist so I know the 'real' side but I also know about all the research and the progress that has been made. It's funny because sometimes my husband (the pessimist) accuses me of being out of touch with reality, but then I fire back and accuse him of the same thing - because he's essentially ignoring all the progress that has been made over the past couple decades. I guess I have faith in that science. I have to keep an optimistic attitude, and believe that my husband and I will have a happy life together for many years to come. Part of it is knowing that he's done pretty well health-wise so far. So I look at the stats and see how he's above average and hope for the best. I think that knowing the realities makes me much more appreciative of all the time we have together, but I also know that there's a really good chance that it won't be as much time as I want, so therefore I want to make the best of that time that we do have. And part of that is not being caught up with all the negativity, since I've done that in the past and really regret the time that I "wasted" being depressed.

I don't think I'm expressing myself very well, but I guess just wanted to offer the perspective from the other side. I mean the truth is my husband is not dying right now, no more than anyone else is, so why act like he is? Don't get me wrong - I can see why you would get annoyed. And my husband gets annoyed too, so that's why it's so interesting for me to read this. I guess my question is this - is it just the optimism from people who don't really know all the realities that annoys you, or does it make it worse when it comes from someone who does know? And how would you prefer us optimists to act? I'd appreciate any thoughts on this, to avoid further annoying my husband.... <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
M

maelstrom

New member
Hmm. very interesting to read all your perspectives on this. I guess I am one of those optimists that annoy you... oops... ha. But I think it's the way TinyGreenTurtles describes her husband - it's a defense mechanism. When I was first dating my husband, and found out about CF, I did a ton of research - since I'm a grad student in a medical field, that was my natural response, learn as much as possible. And I freaked out from all the scary statistics and from reading accounts of so many CF'ers who died so young. So, it's not that I don't know the reality. It's just that after deciding to pursue our relationship seriously, eventually leading to marriage, I've had periods where I got way too hung up on the scary stuff, and ended up pretty depressed. That just wasn't good for me or my husband.

So instead, I choose to focus on the hopeful side. As a scientist so I know the 'real' side but I also know about all the research and the progress that has been made. It's funny because sometimes my husband (the pessimist) accuses me of being out of touch with reality, but then I fire back and accuse him of the same thing - because he's essentially ignoring all the progress that has been made over the past couple decades. I guess I have faith in that science. I have to keep an optimistic attitude, and believe that my husband and I will have a happy life together for many years to come. Part of it is knowing that he's done pretty well health-wise so far. So I look at the stats and see how he's above average and hope for the best. I think that knowing the realities makes me much more appreciative of all the time we have together, but I also know that there's a really good chance that it won't be as much time as I want, so therefore I want to make the best of that time that we do have. And part of that is not being caught up with all the negativity, since I've done that in the past and really regret the time that I "wasted" being depressed.

I don't think I'm expressing myself very well, but I guess just wanted to offer the perspective from the other side. I mean the truth is my husband is not dying right now, no more than anyone else is, so why act like he is? Don't get me wrong - I can see why you would get annoyed. And my husband gets annoyed too, so that's why it's so interesting for me to read this. I guess my question is this - is it just the optimism from people who don't really know all the realities that annoys you, or does it make it worse when it comes from someone who does know? And how would you prefer us optimists to act? I'd appreciate any thoughts on this, to avoid further annoying my husband.... <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
M

maelstrom

New member
Hmm. very interesting to read all your perspectives on this. I guess I am one of those optimists that annoy you... oops... ha. But I think it's the way TinyGreenTurtles describes her husband - it's a defense mechanism. When I was first dating my husband, and found out about CF, I did a ton of research - since I'm a grad student in a medical field, that was my natural response, learn as much as possible. And I freaked out from all the scary statistics and from reading accounts of so many CF'ers who died so young. So, it's not that I don't know the reality. It's just that after deciding to pursue our relationship seriously, eventually leading to marriage, I've had periods where I got way too hung up on the scary stuff, and ended up pretty depressed. That just wasn't good for me or my husband.
<br />
<br />So instead, I choose to focus on the hopeful side. As a scientist so I know the 'real' side but I also know about all the research and the progress that has been made. It's funny because sometimes my husband (the pessimist) accuses me of being out of touch with reality, but then I fire back and accuse him of the same thing - because he's essentially ignoring all the progress that has been made over the past couple decades. I guess I have faith in that science. I have to keep an optimistic attitude, and believe that my husband and I will have a happy life together for many years to come. Part of it is knowing that he's done pretty well health-wise so far. So I look at the stats and see how he's above average and hope for the best. I think that knowing the realities makes me much more appreciative of all the time we have together, but I also know that there's a really good chance that it won't be as much time as I want, so therefore I want to make the best of that time that we do have. And part of that is not being caught up with all the negativity, since I've done that in the past and really regret the time that I "wasted" being depressed.
<br />
<br />I don't think I'm expressing myself very well, but I guess just wanted to offer the perspective from the other side. I mean the truth is my husband is not dying right now, no more than anyone else is, so why act like he is? Don't get me wrong - I can see why you would get annoyed. And my husband gets annoyed too, so that's why it's so interesting for me to read this. I guess my question is this - is it just the optimism from people who don't really know all the realities that annoys you, or does it make it worse when it comes from someone who does know? And how would you prefer us optimists to act? I'd appreciate any thoughts on this, to avoid further annoying my husband.... <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
J

jamie6girl

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>barbc888</b></i>

It is frustrating. My boss (who knows I have CF) mentioned that I looked good (which I hate because it implies that if I look good, then I must feel good). And if I'm working 40 hours a week, then CF is just a matter of popping a pill and then I'm good. NOT. He has no idea what I go thru when I get home. From the second I walk in the door until I go to bed (at a late hour), I'm doing treatments and trying to fit in dinner so that my blood sugar won't drop from my CFRD. When I get frustrated like this, I just remind myself that they don't know, they don't know the disease and what it's all about.</end quote></div><br><br>
My boss is like that too. Has no concept of how much time and money I devote to my health. She expects us to work and work without lunches etc. I get sick of it. My health is more important than this job any day of the week.
 
J

jamie6girl

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>barbc888</b></i>

It is frustrating. My boss (who knows I have CF) mentioned that I looked good (which I hate because it implies that if I look good, then I must feel good). And if I'm working 40 hours a week, then CF is just a matter of popping a pill and then I'm good. NOT. He has no idea what I go thru when I get home. From the second I walk in the door until I go to bed (at a late hour), I'm doing treatments and trying to fit in dinner so that my blood sugar won't drop from my CFRD. When I get frustrated like this, I just remind myself that they don't know, they don't know the disease and what it's all about.</end quote></div><br><br>
My boss is like that too. Has no concept of how much time and money I devote to my health. She expects us to work and work without lunches etc. I get sick of it. My health is more important than this job any day of the week.
 
J

jamie6girl

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>barbc888</b></i>

It is frustrating. My boss (who knows I have CF) mentioned that I looked good (which I hate because it implies that if I look good, then I must feel good). And if I'm working 40 hours a week, then CF is just a matter of popping a pill and then I'm good. NOT. He has no idea what I go thru when I get home. From the second I walk in the door until I go to bed (at a late hour), I'm doing treatments and trying to fit in dinner so that my blood sugar won't drop from my CFRD. When I get frustrated like this, I just remind myself that they don't know, they don't know the disease and what it's all about.</end quote></div><br><br>
My boss is like that too. Has no concept of how much time and money I devote to my health. She expects us to work and work without lunches etc. I get sick of it. My health is more important than this job any day of the week.
 
J

jamie6girl

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>barbc888</b></i>

It is frustrating. My boss (who knows I have CF) mentioned that I looked good (which I hate because it implies that if I look good, then I must feel good). And if I'm working 40 hours a week, then CF is just a matter of popping a pill and then I'm good. NOT. He has no idea what I go thru when I get home. From the second I walk in the door until I go to bed (at a late hour), I'm doing treatments and trying to fit in dinner so that my blood sugar won't drop from my CFRD. When I get frustrated like this, I just remind myself that they don't know, they don't know the disease and what it's all about.</end quote><br><br>
My boss is like that too. Has no concept of how much time and money I devote to my health. She expects us to work and work without lunches etc. I get sick of it. My health is more important than this job any day of the week.
 
J

jamie6girl

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>barbc888</b></i>

It is frustrating. My boss (who knows I have CF) mentioned that I looked good (which I hate because it implies that if I look good, then I must feel good). And if I'm working 40 hours a week, then CF is just a matter of popping a pill and then I'm good. NOT. He has no idea what I go thru when I get home. From the second I walk in the door until I go to bed (at a late hour), I'm doing treatments and trying to fit in dinner so that my blood sugar won't drop from my CFRD. When I get frustrated like this, I just remind myself that they don't know, they don't know the disease and what it's all about.</end quote><br><br>
My boss is like that too. Has no concept of how much time and money I devote to my health. She expects us to work and work without lunches etc. I get sick of it. My health is more important than this job any day of the week.
 
K

kayleesgrandma

New member
Lauren(LightNlife) once posted an article that I've never forgotten. It's called the "Spoon Theory". It's by a person with Lupus, and I think you will find it very helpful. It's on Adobe Reader, but it's been a while since this article has been printed that I think I will put it on my blog...

<a target=_blank class=ftalternatingbarlinklarge href="http://www.butyoudontlooksick.com/the_spoon_theory/">http://www.butyoudontlooksick.com/the_spoon_theory/</a>
 
K

kayleesgrandma

New member
Lauren(LightNlife) once posted an article that I've never forgotten. It's called the "Spoon Theory". It's by a person with Lupus, and I think you will find it very helpful. It's on Adobe Reader, but it's been a while since this article has been printed that I think I will put it on my blog...

<a target=_blank class=ftalternatingbarlinklarge href="http://www.butyoudontlooksick.com/the_spoon_theory/">http://www.butyoudontlooksick.com/the_spoon_theory/</a>
 
K

kayleesgrandma

New member
Lauren(LightNlife) once posted an article that I've never forgotten. It's called the "Spoon Theory". It's by a person with Lupus, and I think you will find it very helpful. It's on Adobe Reader, but it's been a while since this article has been printed that I think I will put it on my blog...

<a target=_blank class=ftalternatingbarlinklarge href="http://www.butyoudontlooksick.com/the_spoon_theory/">http://www.butyoudontlooksick.com/the_spoon_theory/</a>
 
K

kayleesgrandma

New member
Lauren(LightNlife) once posted an article that I've never forgotten. It's called the "Spoon Theory". It's by a person with Lupus, and I think you will find it very helpful. It's on Adobe Reader, but it's been a while since this article has been printed that I think I will put it on my blog...

<a target=_blank class=ftalternatingbarlinklarge href="http://www.butyoudontlooksick.com/the_spoon_theory/">http://www.butyoudontlooksick.com/the_spoon_theory/</a>
 
K

kayleesgrandma

New member
Lauren(LightNlife) once posted an article that I've never forgotten. It's called the "Spoon Theory". It's by a person with Lupus, and I think you will find it very helpful. It's on Adobe Reader, but it's been a while since this article has been printed that I think I will put it on my blog...
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.butyoudontlooksick.com/the_spoon_theory/">http://www.butyoudontlooksick.com/the_spoon_theory/</a>
 
N

NYCLawGirl

New member
Wow, thanks for all the different perspectives. I feel a lot better after reading some of these posts. I guess my response to the caregivers/optimists is that I really didn't mean to imply that optimism or hope is a bad thing with CF - on the contrary, I think it's a lifesaver in a lot of situations. Make no mistake: I love my support system and I appreciate everything they do for me, and I don't begrudge them a little bit of denial if it helps everyone stay afloat in the tidal wave that is this disease. I even see how I use denial to keep myself going, so it would be hypocritical to say I don't understand.

On the other hand, my perspective as a woman who has been through a pretty severe decline in the past couple of years despite a lot of effort on my part to stay healthy is a little different. My health is everything to me. I give up nights out with friends, important assignments at work, and all sorts of other things to get home and do treatments, fit in one more meal, go to yet another clinic appointment, or just generally take care of myself. I have also (like way too many of us) known people with CF who were super compliant and still passed away early.

All I meant to say with my original post is that I sometimes get frustrated with people who make statements that sound as though people who can't control their CF are somehow doing something wrong. I don't mind people pointing out the advancements in science or the great therapies out there for people with CF, I just wish they wouldn't say things like "living a long life with CF is just a matter of taking care of yourself." I know I'm being oversensitive, but I can't help it. It feels like a slap in the face to everyone with CF who does his/her treatments and still can't seem to stay healthy.
 
N

NYCLawGirl

New member
Wow, thanks for all the different perspectives. I feel a lot better after reading some of these posts. I guess my response to the caregivers/optimists is that I really didn't mean to imply that optimism or hope is a bad thing with CF - on the contrary, I think it's a lifesaver in a lot of situations. Make no mistake: I love my support system and I appreciate everything they do for me, and I don't begrudge them a little bit of denial if it helps everyone stay afloat in the tidal wave that is this disease. I even see how I use denial to keep myself going, so it would be hypocritical to say I don't understand.

On the other hand, my perspective as a woman who has been through a pretty severe decline in the past couple of years despite a lot of effort on my part to stay healthy is a little different. My health is everything to me. I give up nights out with friends, important assignments at work, and all sorts of other things to get home and do treatments, fit in one more meal, go to yet another clinic appointment, or just generally take care of myself. I have also (like way too many of us) known people with CF who were super compliant and still passed away early.

All I meant to say with my original post is that I sometimes get frustrated with people who make statements that sound as though people who can't control their CF are somehow doing something wrong. I don't mind people pointing out the advancements in science or the great therapies out there for people with CF, I just wish they wouldn't say things like "living a long life with CF is just a matter of taking care of yourself." I know I'm being oversensitive, but I can't help it. It feels like a slap in the face to everyone with CF who does his/her treatments and still can't seem to stay healthy.
 
N

NYCLawGirl

New member
Wow, thanks for all the different perspectives. I feel a lot better after reading some of these posts. I guess my response to the caregivers/optimists is that I really didn't mean to imply that optimism or hope is a bad thing with CF - on the contrary, I think it's a lifesaver in a lot of situations. Make no mistake: I love my support system and I appreciate everything they do for me, and I don't begrudge them a little bit of denial if it helps everyone stay afloat in the tidal wave that is this disease. I even see how I use denial to keep myself going, so it would be hypocritical to say I don't understand.

On the other hand, my perspective as a woman who has been through a pretty severe decline in the past couple of years despite a lot of effort on my part to stay healthy is a little different. My health is everything to me. I give up nights out with friends, important assignments at work, and all sorts of other things to get home and do treatments, fit in one more meal, go to yet another clinic appointment, or just generally take care of myself. I have also (like way too many of us) known people with CF who were super compliant and still passed away early.

All I meant to say with my original post is that I sometimes get frustrated with people who make statements that sound as though people who can't control their CF are somehow doing something wrong. I don't mind people pointing out the advancements in science or the great therapies out there for people with CF, I just wish they wouldn't say things like "living a long life with CF is just a matter of taking care of yourself." I know I'm being oversensitive, but I can't help it. It feels like a slap in the face to everyone with CF who does his/her treatments and still can't seem to stay healthy.
 
N

NYCLawGirl

New member
Wow, thanks for all the different perspectives. I feel a lot better after reading some of these posts. I guess my response to the caregivers/optimists is that I really didn't mean to imply that optimism or hope is a bad thing with CF - on the contrary, I think it's a lifesaver in a lot of situations. Make no mistake: I love my support system and I appreciate everything they do for me, and I don't begrudge them a little bit of denial if it helps everyone stay afloat in the tidal wave that is this disease. I even see how I use denial to keep myself going, so it would be hypocritical to say I don't understand.

On the other hand, my perspective as a woman who has been through a pretty severe decline in the past couple of years despite a lot of effort on my part to stay healthy is a little different. My health is everything to me. I give up nights out with friends, important assignments at work, and all sorts of other things to get home and do treatments, fit in one more meal, go to yet another clinic appointment, or just generally take care of myself. I have also (like way too many of us) known people with CF who were super compliant and still passed away early.

All I meant to say with my original post is that I sometimes get frustrated with people who make statements that sound as though people who can't control their CF are somehow doing something wrong. I don't mind people pointing out the advancements in science or the great therapies out there for people with CF, I just wish they wouldn't say things like "living a long life with CF is just a matter of taking care of yourself." I know I'm being oversensitive, but I can't help it. It feels like a slap in the face to everyone with CF who does his/her treatments and still can't seem to stay healthy.
 
N

NYCLawGirl

New member
Wow, thanks for all the different perspectives. I feel a lot better after reading some of these posts. I guess my response to the caregivers/optimists is that I really didn't mean to imply that optimism or hope is a bad thing with CF - on the contrary, I think it's a lifesaver in a lot of situations. Make no mistake: I love my support system and I appreciate everything they do for me, and I don't begrudge them a little bit of denial if it helps everyone stay afloat in the tidal wave that is this disease. I even see how I use denial to keep myself going, so it would be hypocritical to say I don't understand.
<br />
<br />On the other hand, my perspective as a woman who has been through a pretty severe decline in the past couple of years despite a lot of effort on my part to stay healthy is a little different. My health is everything to me. I give up nights out with friends, important assignments at work, and all sorts of other things to get home and do treatments, fit in one more meal, go to yet another clinic appointment, or just generally take care of myself. I have also (like way too many of us) known people with CF who were super compliant and still passed away early.
<br />
<br />All I meant to say with my original post is that I sometimes get frustrated with people who make statements that sound as though people who can't control their CF are somehow doing something wrong. I don't mind people pointing out the advancements in science or the great therapies out there for people with CF, I just wish they wouldn't say things like "living a long life with CF is just a matter of taking care of yourself." I know I'm being oversensitive, but I can't help it. It feels like a slap in the face to everyone with CF who does his/her treatments and still can't seem to stay healthy.
 
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