does anyone feel....

[rebekahphillips]

Does anyone still feel like they are left behind with their friends and family?
I still do. I know my friends love me and care for me but I just can't do all the activites they do or still feel tired two days later after a big night.
Does anyone still feel embarrassed they have coughing fits and feel frustrated by them?
Just wondering. i try not to focus on how I feel and try to look at the positive. I just need to feel like I am not alone and not the one with that disease among my friends. I try to explain but they don't know unless they been there.
Rebekah

 

[rebekahphillips]

Does anyone still feel like they are left behind with their friends and family?
I still do. I know my friends love me and care for me but I just can't do all the activites they do or still feel tired two days later after a big night.
Does anyone still feel embarrassed they have coughing fits and feel frustrated by them?
Just wondering. i try not to focus on how I feel and try to look at the positive. I just need to feel like I am not alone and not the one with that disease among my friends. I try to explain but they don't know unless they been there.
Rebekah

 

[thelizardqueen]

I know there are a lot of times that I can't go out with my friends because I'm sick with yet another cold/chest infection. I don't think I'm missing out on anything, or feeling left behind, because to me I would rather stay in and miss the fun and get better, then go out with them and get sicker. I look at the long term picture - sure I miss out on some of the stuff they do because I'm sick, but I'm going to live longer in the long run. It is frustrating though always being sick. I find I hate explaining why I can't go out all the time, as opposed to not being able to go out.

 

[thelizardqueen]

I know there are a lot of times that I can't go out with my friends because I'm sick with yet another cold/chest infection. I don't think I'm missing out on anything, or feeling left behind, because to me I would rather stay in and miss the fun and get better, then go out with them and get sicker. I look at the long term picture - sure I miss out on some of the stuff they do because I'm sick, but I'm going to live longer in the long run. It is frustrating though always being sick. I find I hate explaining why I can't go out all the time, as opposed to not being able to go out.

 

[rebekahphillips]

that's a new way of looking at things. I geuss i would rather stay in and take care of me as oppose to being in the hospital or home IVS for a big chunk at a time.

 

[rebekahphillips]

that's a new way of looking at things. I geuss i would rather stay in and take care of me as oppose to being in the hospital or home IVS for a big chunk at a time.

 

[littledebbie]

You are not alone *big hugg*

Little things like...walking with a group of friends and slowly falling to the back of the crowd becasue you don't walk as fast until you are practically walking alone except for that one friend that always automatically slows down if you are lucky (those friends are worth their weight in gold).

And a big Saturday night on the town, lays you out for Sunday and possibly Monday, so you have to take that into consideration if you should actually go. Because if you have things you need to do, you probably have to say no and sound like a party pooper. especailly when people talk about things like taking a trip to Vegas or somewhere with a high elevation and you have to think of the expense vs how much you will feel like doing and you don't want to be slowing others done etc. Yah, you are not alone, I guess that's my point. I have no solution. But *huggs* to you, it can be isolating.

 

[littledebbie]

You are not alone *big hugg*

Little things like...walking with a group of friends and slowly falling to the back of the crowd becasue you don't walk as fast until you are practically walking alone except for that one friend that always automatically slows down if you are lucky (those friends are worth their weight in gold).

And a big Saturday night on the town, lays you out for Sunday and possibly Monday, so you have to take that into consideration if you should actually go. Because if you have things you need to do, you probably have to say no and sound like a party pooper. especailly when people talk about things like taking a trip to Vegas or somewhere with a high elevation and you have to think of the expense vs how much you will feel like doing and you don't want to be slowing others done etc. Yah, you are not alone, I guess that's my point. I have no solution. But *huggs* to you, it can be isolating.

 

[JazzysMom]

Before I met my current husband I was always out & about. My ex husband & I were always doing stuff & involved with organizations, parties etc. Granted it was easier for me physically to actually do it & I was younger. When I first hooked up with my new husband, I thought how "boring" this is compared to what I like. Now I appreciate the "down" time. I still enjoy going out & dancing etc. I just cant do it as often or as easily. I am now quite content doing crossword puzzles, playing chess or just having a quiet family night. Its funny how things fell into place for me at the time that I needed it to. As far as my friends & family are concerned.....the family knows & are a big help. My friends have dwindled down to just a few because they are the ones that understand & work with me to have fun instead of expecting me to do what they want or how "most" people can do things. I dont want it to sound like it was an easy road for me to get to the acceptance point. I tortured myself mentally with the self pity &/or pushing myself to prove I could do it which of course backfired on me. Its hard, but for me its accept it or not survive! I now see it as I dont need all the activity & hoopla to have a good life. I am more fortunate than many to have a husband who loves me (even tho I test it at times) & a wonderful daughter. When its all said & done I couldnt ask for more!

 

[JazzysMom]

Before I met my current husband I was always out & about. My ex husband & I were always doing stuff & involved with organizations, parties etc. Granted it was easier for me physically to actually do it & I was younger. When I first hooked up with my new husband, I thought how "boring" this is compared to what I like. Now I appreciate the "down" time. I still enjoy going out & dancing etc. I just cant do it as often or as easily. I am now quite content doing crossword puzzles, playing chess or just having a quiet family night. Its funny how things fell into place for me at the time that I needed it to. As far as my friends & family are concerned.....the family knows & are a big help. My friends have dwindled down to just a few because they are the ones that understand & work with me to have fun instead of expecting me to do what they want or how "most" people can do things. I dont want it to sound like it was an easy road for me to get to the acceptance point. I tortured myself mentally with the self pity &/or pushing myself to prove I could do it which of course backfired on me. Its hard, but for me its accept it or not survive! I now see it as I dont need all the activity & hoopla to have a good life. I am more fortunate than many to have a husband who loves me (even tho I test it at times) & a wonderful daughter. When its all said & done I couldnt ask for more!

 

[JustDucky]

((((Rebekah))), I felt that loneliness when I first stopped working, alot of my colleagues were also my friends and I enjoyed their company on a day to day basis. Once I had to stop nursing, alot of them slowly faded out of the picture, I still have a few good friends from work who do send card etc. I know that these people have their own lives, so I am okay with it. I do get emails occassionally from my other nurse buddies asking how I am, so I know that they do think of me....but as you know, it isn't the same as seeing them and laughing with them. I will say this though, I have made so many friends from the internet, as far away as Australia and we write back and forth. I may not be able to go out dancing, or be a party animal (okay, I will say I am an animal LOL) but I have tried to adapt to my life the way it is now. When I feel good, I am out and about...when I am on IV's and home feeling crappy, I just watch a good funny movie, even a stupid one just to lift my spirits. My family has been pretty good with me, my immediate family that is. My favorite aunt comes by once a week to visit, which I love because she has a wonderful sense of humor and just makes me laugh the whole time she is at my home. My other family, such as uncles and other aunts don't really come around much, even though they live about a mile from my home. That I find is very sad, my mother helps take care of me and these are her brothers and sisters, I am sure that it hurts her more than it hurts me that they don't even pick up a phone to even ask if she is okay or if she would like help. I guess it is during these times you really find out who your true friends are. Hang in there my friend, I am thinking of you...Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

((((Rebekah))), I felt that loneliness when I first stopped working, alot of my colleagues were also my friends and I enjoyed their company on a day to day basis. Once I had to stop nursing, alot of them slowly faded out of the picture, I still have a few good friends from work who do send card etc. I know that these people have their own lives, so I am okay with it. I do get emails occassionally from my other nurse buddies asking how I am, so I know that they do think of me....but as you know, it isn't the same as seeing them and laughing with them. I will say this though, I have made so many friends from the internet, as far away as Australia and we write back and forth. I may not be able to go out dancing, or be a party animal (okay, I will say I am an animal LOL) but I have tried to adapt to my life the way it is now. When I feel good, I am out and about...when I am on IV's and home feeling crappy, I just watch a good funny movie, even a stupid one just to lift my spirits. My family has been pretty good with me, my immediate family that is. My favorite aunt comes by once a week to visit, which I love because she has a wonderful sense of humor and just makes me laugh the whole time she is at my home. My other family, such as uncles and other aunts don't really come around much, even though they live about a mile from my home. That I find is very sad, my mother helps take care of me and these are her brothers and sisters, I am sure that it hurts her more than it hurts me that they don't even pick up a phone to even ask if she is okay or if she would like help. I guess it is during these times you really find out who your true friends are. Hang in there my friend, I am thinking of you...Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I don't have CF, but our son does and sometimes I notice that we get left behind. Find out after the fact that a much of DH's family members have gotten together over the weekend and my in-laws "thought about calling, but figured you were busy with feeding or treatements". The first summer DS was born/diagnosed, it was soooo lonely 'cuz everyone was out at the lakes, enjoying the summer and we sorta got left behind. My BIL always plans big vacations for the entire family (his brothers, parents and wife's parents) in the summer or winter months and I overheard his wife talk about this huge trip to Cancun right after Xmas and it was "just for family" -- we weren't invited.

I think they're finally realizing that we aren't going to let DS's diagnosis keep us from travelling and doing normal things. We've taken DS on vacations involving air travel three or four times, most recently we went to Puerto Vallarta for a wedding and DS had a blast. So now I figure, we'll make our own fun and leave those who have snubbed us in the dust.

 

[anonymous]

I don't have CF, but our son does and sometimes I notice that we get left behind. Find out after the fact that a much of DH's family members have gotten together over the weekend and my in-laws "thought about calling, but figured you were busy with feeding or treatements". The first summer DS was born/diagnosed, it was soooo lonely 'cuz everyone was out at the lakes, enjoying the summer and we sorta got left behind. My BIL always plans big vacations for the entire family (his brothers, parents and wife's parents) in the summer or winter months and I overheard his wife talk about this huge trip to Cancun right after Xmas and it was "just for family" -- we weren't invited.

I think they're finally realizing that we aren't going to let DS's diagnosis keep us from travelling and doing normal things. We've taken DS on vacations involving air travel three or four times, most recently we went to Puerto Vallarta for a wedding and DS had a blast. So now I figure, we'll make our own fun and leave those who have snubbed us in the dust.

 

[skh]

I've noticed that when my daughter has a sleep over with her friends it takes her about a day to make up for that. She needs about a day of very low activity and napping to get back in the swing of things. I am glad that she does do things with her friends but I am also happy that she knows what her body needs to get back up to speed.

We have taken her on many vacations and camping trips. We don't let it hold us back but we tend to let her set the pace since she knows her body better then we do.

Sue

 

[skh]

I've noticed that when my daughter has a sleep over with her friends it takes her about a day to make up for that. She needs about a day of very low activity and napping to get back in the swing of things. I am glad that she does do things with her friends but I am also happy that she knows what her body needs to get back up to speed.

We have taken her on many vacations and camping trips. We don't let it hold us back but we tend to let her set the pace since she knows her body better then we do.

Sue