Managing CF and relationships

lecheval

New member
This is something that has been plaguing me for awhile now and I haven't known who to talk to and where to go for input. <div><br></div><div>Right now I'm facing an entirely new (for me) CF-related challenge - as the title says, how to maintain a serious relationship with CF. I am often the first one to say that I try really hard not to let the disease hold me back or get in the way of life, but I just don't know how to overcome the physical, emotional, and time constraints I'm experiencing.</div><div><br></div><div>My bf and I have been dating fairly seriously since November, and this falls on the heels of my last relationship of 3+ years coming to a very amiable end last summer. The BF doesn't seem "get" what a serious part of my life this is. To some extent, that's completely reasonable, but I find myself very easily frustrated when I'm feeling sick and worn down and am constantly pestered with, "What's wrong? Is it me? Can you talk to me about it?"  I end up getting short and snappy which is NOT my intent, but I just don't know how else to convey the fact that sometimes I just need space to sort things out without his input and assistance! He understands that I get sick now and then and that I have to watch my health, but for lack of a better way to put it, it isn't "real" to him. Sometimes I can't share everything I'm feeling - sometimes that's the only way I can hold myself together enough to face  each and every day. Honesty and clear communication is extremely important to us both, so when I tell him, "I can't talk to you about this today," I feel like I am not holding up my end of the bargain, and yet I'm honestly not willing or able to change that at this point in time. </div><div> </div><div>On the other hand, I have reservations, some subconscious I'm sure, about bringing him any further into my world to be emotionally torn to shreds as my health declines. I had never imagined that somebody could talk to me and treat me with as much love and admiration and respect as this man has for me, and for this experience I am eternally grateful. There are a lot of wonderful qualities to our relationship and at the same time I often find myself thinking that I would just be so much more at ease if I was single. Any healthy relationship requires participation and effort from both sides and I just don't know if I have what it takes right now to manage my life and my health (which is ultimately the priority regardless of any other factors) AND our relationship. I'm being worn down by these constant feelings of guilt and selfishness and I just don't know if or when to call it quits. I really hope I'm not the only one who has felt this way.  Thanks all.</div>
 

lecheval

New member
This is something that has been plaguing me for awhile now and I haven't known who to talk to and where to go for input.<br>Right now I'm facing an entirely new (for me) CF-related challenge - as the title says, how to maintain a serious relationship with CF. I am often the first one to say that I try really hard not to let the disease hold me back or get in the way of life, but I just don't know how to overcome the physical, emotional, and time constraints I'm experiencing.<br>My bf and I have been dating fairly seriously since November, and this falls on the heels of my last relationship of 3+ years coming to a very amiable end last summer. The BF doesn't seem "get" what a serious part of my life this is. To some extent, that's completely reasonable, but I find myself very easily frustrated when I'm feeling sick and worn down and am constantly pestered with, "What's wrong? Is it me? Can you talk to me about it?" I end up getting short and snappy which is NOT my intent, but I just don't know how else to convey the fact that sometimes I just need space to sort things out without his input and assistance! He understands that I get sick now and then and that I have to watch my health, but for lack of a better way to put it, it isn't "real" to him. Sometimes I can't share everything I'm feeling - sometimes that's the only way I can hold myself together enough to face each and every day. Honesty and clear communication is extremely important to us both, so when I tell him, "I can't talk to you about this today," I feel like I am not holding up my end of the bargain, and yet I'm honestly not willing or able to change that at this point in time.On the other hand, I have reservations, some subconscious I'm sure, about bringing him any further into my world to be emotionally torn to shreds as my health declines. I had never imagined that somebody could talk to me and treat me with as much love and admiration and respect as this man has for me, and for this experience I am eternally grateful. There are a lot of wonderful qualities to our relationship and at the same time I often find myself thinking that I would just be so much more at ease if I was single. Any healthy relationship requires participation and effort from both sides and I just don't know if I have what it takes right now to manage my life and my health (which is ultimately the priority regardless of any other factors) AND our relationship. I'm being worn down by these constant feelings of guilt and selfishness and I just don't know if or when to call it quits. I really hope I'm not the only one who has felt this way. Thanks all.
 

lecheval

New member
This is something that has been plaguing me for awhile now and I haven't known who to talk to and where to go for input.<br>Right now I'm facing an entirely new (for me) CF-related challenge - as the title says, how to maintain a serious relationship with CF. I am often the first one to say that I try really hard not to let the disease hold me back or get in the way of life, but I just don't know how to overcome the physical, emotional, and time constraints I'm experiencing.<br>My bf and I have been dating fairly seriously since November, and this falls on the heels of my last relationship of 3+ years coming to a very amiable end last summer. The BF doesn't seem "get" what a serious part of my life this is. To some extent, that's completely reasonable, but I find myself very easily frustrated when I'm feeling sick and worn down and am constantly pestered with, "What's wrong? Is it me? Can you talk to me about it?" I end up getting short and snappy which is NOT my intent, but I just don't know how else to convey the fact that sometimes I just need space to sort things out without his input and assistance! He understands that I get sick now and then and that I have to watch my health, but for lack of a better way to put it, it isn't "real" to him. Sometimes I can't share everything I'm feeling - sometimes that's the only way I can hold myself together enough to face each and every day. Honesty and clear communication is extremely important to us both, so when I tell him, "I can't talk to you about this today," I feel like I am not holding up my end of the bargain, and yet I'm honestly not willing or able to change that at this point in time.On the other hand, I have reservations, some subconscious I'm sure, about bringing him any further into my world to be emotionally torn to shreds as my health declines. I had never imagined that somebody could talk to me and treat me with as much love and admiration and respect as this man has for me, and for this experience I am eternally grateful. There are a lot of wonderful qualities to our relationship and at the same time I often find myself thinking that I would just be so much more at ease if I was single. Any healthy relationship requires participation and effort from both sides and I just don't know if I have what it takes right now to manage my life and my health (which is ultimately the priority regardless of any other factors) AND our relationship. I'm being worn down by these constant feelings of guilt and selfishness and I just don't know if or when to call it quits. I really hope I'm not the only one who has felt this way. Thanks all.
 

static

New member
<P>I know there are quite a few wives/husbands on here that could give you better advice on this subject, so before they chime in and outdo me I'll tell ya what I think lol. </P>
<P> </P>
<P>You are already 1 step ahead of me by even being in a relationship, that very fear of having to share EVERYTHING has kept me from going on dates with the same person for an extended period of time. </P>
<P> </P>
<P>I can tell you what it was like living with my roomate though, who went from thinking I was an average 21 year old to seeing the "true" me. At one moment I would want him to actually think and be sympathetic to my illness because I couldn't do x or couldn't join him with Y, but in another moment I didn't want him to think that CF is holding me back so much I couldn't do anything. It was really frusterating for both of us because we could never come to a point of understanding. That is pretty much key right there, the aspect of understanding each other at all times, which can only be achieved through communication. </P>
<P> </P>
<P>Being both guys we never did get there, so he moved out but we still remain friends. Looking back I realize I expected too much, as no one can read minds at every instant.</P>
<P> </P>
<P>So the best advice I can give is to keep the lines of communcation open, even when you "expect" him to just get it (to us it is so obvious, we are coughing and having a bad day we wonder how others' can't simply connect the dots). </P>
<P> </P>
<P>Best of luck to you and the relationship, even if it doesn't work out know that you are still ahead of most CF'ers in this department.  </P>
 

static

New member
<P>I know there are quite a few wives/husbands on here that could give you better advice on this subject, so before they chime in and outdo me I'll tell ya what I think lol. </P>
<P></P>
<P>You are already 1 step ahead of me by even being in a relationship, that very fear of having to share EVERYTHING has kept me from going on dates with the same person for an extended period of time. </P>
<P></P>
<P>I can tell you what it was like living with my roomate though, who went from thinking I was an average 21 year old to seeing the "true" me. At one moment I would want him to actually think and be sympathetic to my illness because I couldn't do x or couldn't join him with Y, but in another moment I didn't want him to think that CF is holding me back so much I couldn't do anything. It was really frusterating for both of us because we could never come to a point of understanding. That is pretty much key right there, the aspect of understanding each other at all times, which can only be achieved through communication. </P>
<P></P>
<P>Being both guys we never did get there, so he moved out but we still remain friends. Looking back I realize I expected too much, as no one can read minds at every instant.</P>
<P></P>
<P>So the best adviceI can give is to keep the lines ofcommuncation open, even when you "expect" him to just get it (to us it is so obvious, we are coughing and having abad day we wonder how others' can't simply connect the dots). </P>
<P></P>
<P>Best of luck to you and the relationship, even if it doesn't work out know thatyou are still ahead of most CF'ers in this department. </P>
 

static

New member
<P>I know there are quite a few wives/husbands on here that could give you better advice on this subject, so before they chime in and outdo me I'll tell ya what I think lol. </P>
<P></P>
<P>You are already 1 step ahead of me by even being in a relationship, that very fear of having to share EVERYTHING has kept me from going on dates with the same person for an extended period of time. </P>
<P></P>
<P>I can tell you what it was like living with my roomate though, who went from thinking I was an average 21 year old to seeing the "true" me. At one moment I would want him to actually think and be sympathetic to my illness because I couldn't do x or couldn't join him with Y, but in another moment I didn't want him to think that CF is holding me back so much I couldn't do anything. It was really frusterating for both of us because we could never come to a point of understanding. That is pretty much key right there, the aspect of understanding each other at all times, which can only be achieved through communication. </P>
<P></P>
<P>Being both guys we never did get there, so he moved out but we still remain friends. Looking back I realize I expected too much, as no one can read minds at every instant.</P>
<P></P>
<P>So the best adviceI can give is to keep the lines ofcommuncation open, even when you "expect" him to just get it (to us it is so obvious, we are coughing and having abad day we wonder how others' can't simply connect the dots). </P>
<P></P>
<P>Best of luck to you and the relationship, even if it doesn't work out know thatyou are still ahead of most CF'ers in this department. </P>
 

coltsfan715

New member
I think you should read your post to him honestly.

There are a few things I have learned over the years with the relationships I have been in one is that you can not make the decision for a partner as to whether or not they need to be "put through" things with you that is their decision. It is important to give up that control and allow your significant other to decide for themselves if they want to be with you enough to deal with the unpleasant events that may occur.

Second, like you already mentioned, honesty and open communication is important. Even if it is open and honest to the point of saying I love you and I want to be able to share these things with you but I am not there yet. It isn't you I just want to have time in my life where I am not having to face the glaring truth about what I am dealing with. When you have no control over your own body it is hard and it is sometimes even harder to say things out loud. Meaning before my transplant I had a really hard time admitting I couldn't do things like I used to be able to or that I was even having a transplant at all. It took me a while to say those words because saying them out loud made them real.

My current boyfriend and I have been dating since last September and we rarely talk about my health. Sometimes he will ask questions and I answer them and then we move on to the next topic. He knows I don't like to talk about all the what ifs but I will answer anything he asks of me to the best of my ability. We don't specifically talk about my issues unless I am having an issue. It works well that way for me and him, at this time anyway.

Also to put it out there. Just because you are dating someone doesn't mean you have to see them in all of your spare time. Talk with him and tell him that you are being drained of energy, with everything you have going on, and that you still want to maintain a relationship but he may have to do more work as far as when you guys get together and what you all do. Maybe he needs to come see you more than you go see him. Maybe only 1-2 late nights a week if any, maybe you always do a treatment before you go anywhere with him. Whatever it is you NEED to do. If it is meant to be he will want to work around whatever problem there is in order to maintain a relationship with you.

If you talk to him about this and he walks away ... let him walk because he wouldn't have been able to make it through the hard stuff anyway.

I wish you all the best and it is possible to have a loving and supportive relationship despite all the crap that gets thrown our way.

Take Care
Lindsey
 

coltsfan715

New member
I think you should read your post to him honestly.

There are a few things I have learned over the years with the relationships I have been in one is that you can not make the decision for a partner as to whether or not they need to be "put through" things with you that is their decision. It is important to give up that control and allow your significant other to decide for themselves if they want to be with you enough to deal with the unpleasant events that may occur.

Second, like you already mentioned, honesty and open communication is important. Even if it is open and honest to the point of saying I love you and I want to be able to share these things with you but I am not there yet. It isn't you I just want to have time in my life where I am not having to face the glaring truth about what I am dealing with. When you have no control over your own body it is hard and it is sometimes even harder to say things out loud. Meaning before my transplant I had a really hard time admitting I couldn't do things like I used to be able to or that I was even having a transplant at all. It took me a while to say those words because saying them out loud made them real.

My current boyfriend and I have been dating since last September and we rarely talk about my health. Sometimes he will ask questions and I answer them and then we move on to the next topic. He knows I don't like to talk about all the what ifs but I will answer anything he asks of me to the best of my ability. We don't specifically talk about my issues unless I am having an issue. It works well that way for me and him, at this time anyway.

Also to put it out there. Just because you are dating someone doesn't mean you have to see them in all of your spare time. Talk with him and tell him that you are being drained of energy, with everything you have going on, and that you still want to maintain a relationship but he may have to do more work as far as when you guys get together and what you all do. Maybe he needs to come see you more than you go see him. Maybe only 1-2 late nights a week if any, maybe you always do a treatment before you go anywhere with him. Whatever it is you NEED to do. If it is meant to be he will want to work around whatever problem there is in order to maintain a relationship with you.

If you talk to him about this and he walks away ... let him walk because he wouldn't have been able to make it through the hard stuff anyway.

I wish you all the best and it is possible to have a loving and supportive relationship despite all the crap that gets thrown our way.

Take Care
Lindsey
 

coltsfan715

New member
I think you should read your post to him honestly.
<br />
<br />There are a few things I have learned over the years with the relationships I have been in one is that you can not make the decision for a partner as to whether or not they need to be "put through" things with you that is their decision. It is important to give up that control and allow your significant other to decide for themselves if they want to be with you enough to deal with the unpleasant events that may occur.
<br />
<br />Second, like you already mentioned, honesty and open communication is important. Even if it is open and honest to the point of saying I love you and I want to be able to share these things with you but I am not there yet. It isn't you I just want to have time in my life where I am not having to face the glaring truth about what I am dealing with. When you have no control over your own body it is hard and it is sometimes even harder to say things out loud. Meaning before my transplant I had a really hard time admitting I couldn't do things like I used to be able to or that I was even having a transplant at all. It took me a while to say those words because saying them out loud made them real.
<br />
<br />My current boyfriend and I have been dating since last September and we rarely talk about my health. Sometimes he will ask questions and I answer them and then we move on to the next topic. He knows I don't like to talk about all the what ifs but I will answer anything he asks of me to the best of my ability. We don't specifically talk about my issues unless I am having an issue. It works well that way for me and him, at this time anyway.
<br />
<br />Also to put it out there. Just because you are dating someone doesn't mean you have to see them in all of your spare time. Talk with him and tell him that you are being drained of energy, with everything you have going on, and that you still want to maintain a relationship but he may have to do more work as far as when you guys get together and what you all do. Maybe he needs to come see you more than you go see him. Maybe only 1-2 late nights a week if any, maybe you always do a treatment before you go anywhere with him. Whatever it is you NEED to do. If it is meant to be he will want to work around whatever problem there is in order to maintain a relationship with you.
<br />
<br />If you talk to him about this and he walks away ... let him walk because he wouldn't have been able to make it through the hard stuff anyway.
<br />
<br />I wish you all the best and it is possible to have a loving and supportive relationship despite all the crap that gets thrown our way.
<br />
<br />Take Care
<br />Lindsey
<br />
<br />
 

StillFighting

New member
I have been married for sixteen years now. I was diagnosed during our 9th year anniversary. We had a really rocky year in the year of diagnosis and wasn`t sure our marriage would last. We have adapted by choosing not to discuss CF during my healthy days, but to deal with it when I am ill.

The support of someone in your life is extremely important. If this individual truly loves you, he will be there no matter what. I suggest that you have a conversation with him to precisely explain what it is that you need. You need to believe that someone can love you. I still have issues with this. I always wonder why my husband chose to stay. I do not feel that I am worthy of him. Ironically, he feels that he is not worthy of me.

My advice is to not let go of those that are willing to be by our side, but to discuss and adjust how both should behave so that both are comfortable in dealing with the disease as best as they can.

Ana
 

StillFighting

New member
I have been married for sixteen years now. I was diagnosed during our 9th year anniversary. We had a really rocky year in the year of diagnosis and wasn`t sure our marriage would last. We have adapted by choosing not to discuss CF during my healthy days, but to deal with it when I am ill.

The support of someone in your life is extremely important. If this individual truly loves you, he will be there no matter what. I suggest that you have a conversation with him to precisely explain what it is that you need. You need to believe that someone can love you. I still have issues with this. I always wonder why my husband chose to stay. I do not feel that I am worthy of him. Ironically, he feels that he is not worthy of me.

My advice is to not let go of those that are willing to be by our side, but to discuss and adjust how both should behave so that both are comfortable in dealing with the disease as best as they can.

Ana
 

StillFighting

New member
I have been married for sixteen years now. I was diagnosed during our 9th year anniversary. We had a really rocky year in the year of diagnosis and wasn`t sure our marriage would last. We have adapted by choosing not to discuss CF during my healthy days, but to deal with it when I am ill.
<br />
<br />The support of someone in your life is extremely important. If this individual truly loves you, he will be there no matter what. I suggest that you have a conversation with him to precisely explain what it is that you need. You need to believe that someone can love you. I still have issues with this. I always wonder why my husband chose to stay. I do not feel that I am worthy of him. Ironically, he feels that he is not worthy of me.
<br />
<br />My advice is to not let go of those that are willing to be by our side, but to discuss and adjust how both should behave so that both are comfortable in dealing with the disease as best as they can.
<br />
<br />Ana
<br />
<br />
 
My ex boyfriend and i had similar issues. the last straw was when he wanted to marry me but was so afraid that my medical needs whould make us bankrupt. after many talks about how this wouldnt happen if we maintain a good insurance policy, he still made me feel like a burden. thats when i broke up with him. so after saying this, here is what i learned.
I agree with Lindsey about communication. it is a big key. If he doesn't understand you the first time, try saying it a different way. Keep in mind that if he just doesn't understand after many talks, it may be time to part ways. It is better to part ways now then after you have a marriage and kids to deal with...
Always say things in a positive way. also have him repeat what you just said so that you know that he understands you. i know this is hard or dumb sounding but i find it the best way to be sure that two people understand each other.
if things get heated, take a break. talk about things before they happen or after you cool down. When you feel sick and Before he starts asking, "What's wrong? " to the point where you end up getting short and snappy, let him know that sometimes you don't like to be ask these things. try to make him understand that when you are sick and just trying to survive the moment its hard to be patient with these questions. my ex did the same thing. guys are told to keep asking these questions to help women open up but this is always not the case. when you are sick and just want to be left alone or have a easy night, it doesnt help for someone to behave in a way to irrate you. say statments like "when you do this, i feel this way"..
it seems like you are nervous about bringing him deeper into the CF world. my advice is start with the little things like watching or helping you do treatments. then slowly show him bigger things like a day into the hospital life. encourage him to ask questions about the cf and the way you do things.
 
My ex boyfriend and i had similar issues. the last straw was when he wanted to marry me but was so afraid that my medical needs whould make us bankrupt. after many talks about how this wouldnt happen if we maintain a good insurance policy, he still made me feel like a burden. thats when i broke up with him. so after saying this, here is what i learned.
I agree with Lindsey about communication. it is a big key. If he doesn't understand you the first time, try saying it a different way. Keep in mind that if he just doesn't understand after many talks, it may be time to part ways. It is better to part ways now then after you have a marriage and kids to deal with...
Always say things in a positive way. also have him repeat what you just said so that you know that he understands you. i know this is hard or dumb sounding but i find it the best way to be sure that two people understand each other.
if things get heated, take a break. talk about things before they happen or after you cool down. When you feel sick and Before he starts asking, "What's wrong? " to the point where you end up getting short and snappy, let him know that sometimes you don't like to be ask these things. try to make him understand that when you are sick and just trying to survive the moment its hard to be patient with these questions. my ex did the same thing. guys are told to keep asking these questions to help women open up but this is always not the case. when you are sick and just want to be left alone or have a easy night, it doesnt help for someone to behave in a way to irrate you. say statments like "when you do this, i feel this way"..
it seems like you are nervous about bringing him deeper into the CF world. my advice is start with the little things like watching or helping you do treatments. then slowly show him bigger things like a day into the hospital life. encourage him to ask questions about the cf and the way you do things.
 
My ex boyfriend and i had similar issues. the last straw was when he wanted to marry me but was so afraid that my medical needs whould make us bankrupt. after many talks about how this wouldnt happen if we maintain a good insurance policy, he still made me feel like a burden. thats when i broke up with him. so after saying this, here is what i learned.
<br />I agree with Lindsey about communication. it is a big key. If he doesn't understand you the first time, try saying it a different way. Keep in mind that if he just doesn't understand after many talks, it may be time to part ways. It is better to part ways now then after you have a marriage and kids to deal with...
<br />Always say things in a positive way. also have him repeat what you just said so that you know that he understands you. i know this is hard or dumb sounding but i find it the best way to be sure that two people understand each other.
<br />if things get heated, take a break. talk about things before they happen or after you cool down. When you feel sick and Before he starts asking, "What's wrong? " to the point where you end up getting short and snappy, let him know that sometimes you don't like to be ask these things. try to make him understand that when you are sick and just trying to survive the moment its hard to be patient with these questions. my ex did the same thing. guys are told to keep asking these questions to help women open up but this is always not the case. when you are sick and just want to be left alone or have a easy night, it doesnt help for someone to behave in a way to irrate you. say statments like "when you do this, i feel this way"..
<br />it seems like you are nervous about bringing him deeper into the CF world. my advice is start with the little things like watching or helping you do treatments. then slowly show him bigger things like a day into the hospital life. encourage him to ask questions about the cf and the way you do things.
<br />
 

lecheval

New member
Thanks so much, everybody. I don't have a long response, I just really appreciate you all sharing your thoughts and experiences with me and showing me that my feelings are real and okay and that I can deal with them and with "us". As time goes on I'm feeling more and more like this just isn't meant to be. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I hate to say that prematurely but I'm having a hard time coming up with really good reasons to continue in this relationship.
 

lecheval

New member
Thanks so much, everybody. I don't have a long response, I just really appreciate you all sharing your thoughts and experiences with me and showing me that my feelings are real and okay and that I can deal with them and with "us". As time goes on I'm feeling more and more like this just isn't meant to be. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I hate to say that prematurely but I'm having a hard time coming up with really good reasons to continue in this relationship.
 
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