has cf affected your social life

Ricky123

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>clinging2faith</b></i>

Hi Ricky123:



Yes it has for me too. CF does affect to a great extent.

HOw can we make many friends when we are hospitalized and in bed at home or trying to stay away from other's germs? It is difficult also because like you state, its not always possible to be in the greatest mood and relentlessly have energy for all the demands of having friends all the time and around.



It is tiring to try to keep up with friends. I lucked out because I have my set of very good friends since childhood and adolescence, I sitll have at least 5 of my highschool friends who are my constant supporters whenever they can get online because they are in Spain and Mexico and Italy and South America.



Talking takes energy, if one is clogged well it s more difficult to keep talking, joking, laughing and us )chocking!



I , like you, had or maybe have some sort of inferiority feeling too not from other but from the fact that cf does limit us in many ways even if one is encouraged to live a normal life, its not always normal is it?



To have a social life, one needs energy, stamina, lungs clear so one can talk for hours, no therapies so one does not interrupt others (or vice versa), one should be able to feel so good that one can go anywhere and smile. Eating problems? This was my biggest issue when I was growing up. HOW TO HIDE THE HORRIBLE GAS PROBLEM FROM DIGESTIVE PROBLEMS? back when I was a child I had to suffer so much from this and go to school and hide in the bathroom until all the kids were out so nobody would smell ... it was very hard I remember that and sometimes I still do.



I remember one time I had a Catholic retreat when i was 12yrs old. I had joined with my school 2 entire classrooms of girls in the retreat. For every two girls we had a small room to sleep in with the toilet in the middle of the room enclosed in 3 walls. HOW DOES A CF PERSON WITH SEVERE DIGESTIVE DISORDER HIDE THIS IN THS SITUATION?

I had to not go to the toilet for 3 days, i went back home with such a severe intestinal blockage from holding all in.

YES ITS REALLY SAD BUT CF DOES AFFECT GREATLY SOCIAL LIFE.



We can go up and down the list of problems which can be large.



People who have a great social life, have a greater body and illness not so bad or no illness at all. They can stand the daily and routine things in a social life which are very demanding on a cf person with breathing proble3ms, digesting probs, etc.



I cant think of having a social life whenIm in a lot of pain unable to get up from it, coughing, chocking, medication schedules, et c etc etc sometimes one has to make the friends online, get a few phone calls from others and leave the socializing till one feels good enough to walk out and talk for hours (to say the least).



Yes thereare CF people who do have a great social life I think, but those may be the ones with a milder form of cf that allows them to continue as if nothing was wrong and with not many complicaitons to have a social life.



I find that being so thin makes me feel so badly inferior now becayse I compare myself all the time looking at evrybody else being ok (those without cf) and me here like bones. ITS HARD IT IS.

Somethings we can overcome some we may not .



Mary</end quote></div>great post i think you have summed up perfectly how cf can affect you in a social environment
 

Ricky123

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>clinging2faith</b></i>

Hi Ricky123:



Yes it has for me too. CF does affect to a great extent.

HOw can we make many friends when we are hospitalized and in bed at home or trying to stay away from other's germs? It is difficult also because like you state, its not always possible to be in the greatest mood and relentlessly have energy for all the demands of having friends all the time and around.



It is tiring to try to keep up with friends. I lucked out because I have my set of very good friends since childhood and adolescence, I sitll have at least 5 of my highschool friends who are my constant supporters whenever they can get online because they are in Spain and Mexico and Italy and South America.



Talking takes energy, if one is clogged well it s more difficult to keep talking, joking, laughing and us )chocking!



I , like you, had or maybe have some sort of inferiority feeling too not from other but from the fact that cf does limit us in many ways even if one is encouraged to live a normal life, its not always normal is it?



To have a social life, one needs energy, stamina, lungs clear so one can talk for hours, no therapies so one does not interrupt others (or vice versa), one should be able to feel so good that one can go anywhere and smile. Eating problems? This was my biggest issue when I was growing up. HOW TO HIDE THE HORRIBLE GAS PROBLEM FROM DIGESTIVE PROBLEMS? back when I was a child I had to suffer so much from this and go to school and hide in the bathroom until all the kids were out so nobody would smell ... it was very hard I remember that and sometimes I still do.



I remember one time I had a Catholic retreat when i was 12yrs old. I had joined with my school 2 entire classrooms of girls in the retreat. For every two girls we had a small room to sleep in with the toilet in the middle of the room enclosed in 3 walls. HOW DOES A CF PERSON WITH SEVERE DIGESTIVE DISORDER HIDE THIS IN THS SITUATION?

I had to not go to the toilet for 3 days, i went back home with such a severe intestinal blockage from holding all in.

YES ITS REALLY SAD BUT CF DOES AFFECT GREATLY SOCIAL LIFE.



We can go up and down the list of problems which can be large.



People who have a great social life, have a greater body and illness not so bad or no illness at all. They can stand the daily and routine things in a social life which are very demanding on a cf person with breathing proble3ms, digesting probs, etc.



I cant think of having a social life whenIm in a lot of pain unable to get up from it, coughing, chocking, medication schedules, et c etc etc sometimes one has to make the friends online, get a few phone calls from others and leave the socializing till one feels good enough to walk out and talk for hours (to say the least).



Yes thereare CF people who do have a great social life I think, but those may be the ones with a milder form of cf that allows them to continue as if nothing was wrong and with not many complicaitons to have a social life.



I find that being so thin makes me feel so badly inferior now becayse I compare myself all the time looking at evrybody else being ok (those without cf) and me here like bones. ITS HARD IT IS.

Somethings we can overcome some we may not .



Mary</end quote></div>great post i think you have summed up perfectly how cf can affect you in a social environment
 
everyone thanks for sharing.
I feel left out to because of my Cf. Since I don't do everything my friends do, I get forgotten. People make other plans when they are together which frustates me. Then I hear all about the plans when I do join them.
On the other hand, CF has helped me to see who is my true friends.
 
everyone thanks for sharing.
I feel left out to because of my Cf. Since I don't do everything my friends do, I get forgotten. People make other plans when they are together which frustates me. Then I hear all about the plans when I do join them.
On the other hand, CF has helped me to see who is my true friends.
 
everyone thanks for sharing.
I feel left out to because of my Cf. Since I don't do everything my friends do, I get forgotten. People make other plans when they are together which frustates me. Then I hear all about the plans when I do join them.
On the other hand, CF has helped me to see who is my true friends.
 

NoExcuses

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

Word on the street is my social life is one of the most notorious and raging.

Girl likes to get onnnn it.

And there's no time to think about CF when you're busy being flyy.

Heh.</end quote></div>

we haven't heard from you in awhile girl! good to have you back.

you post made me laugh... you're awesome <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

NoExcuses

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

Word on the street is my social life is one of the most notorious and raging.

Girl likes to get onnnn it.

And there's no time to think about CF when you're busy being flyy.

Heh.</end quote></div>

we haven't heard from you in awhile girl! good to have you back.

you post made me laugh... you're awesome <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

NoExcuses

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

Word on the street is my social life is one of the most notorious and raging.

Girl likes to get onnnn it.

And there's no time to think about CF when you're busy being flyy.

Heh.</end quote></div>

we haven't heard from you in awhile girl! good to have you back.

you post made me laugh... you're awesome <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

LouLou

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

I'm the odd one - I've always had a completely normal social life.



I'm sure a lot has to do with my CF being so mild.



But a lot had to do with how my parents raised me as well - I never felt different, I was never treated differently, etc. I'm short, so what? I'm skinny, so what? I also have a cool shaking Vest and an electric cigarette called a neb.



I think CF can affect you socially if you let it. It's your choice.</end quote></div>


I agree with Amy on this one completely. I will say that in high school I was the go to person in my posse to find out what was happening. I was known as the planner. Is this cf related? Who knows but it could be because I had my sh_i_t together because I wanted to have fun but knew I had nebs and treatments to get done as well. Cf definitely ages us (well at least some of us) beyond our years experience wise.
 

LouLou

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

I'm the odd one - I've always had a completely normal social life.



I'm sure a lot has to do with my CF being so mild.



But a lot had to do with how my parents raised me as well - I never felt different, I was never treated differently, etc. I'm short, so what? I'm skinny, so what? I also have a cool shaking Vest and an electric cigarette called a neb.



I think CF can affect you socially if you let it. It's your choice.</end quote></div>


I agree with Amy on this one completely. I will say that in high school I was the go to person in my posse to find out what was happening. I was known as the planner. Is this cf related? Who knows but it could be because I had my sh_i_t together because I wanted to have fun but knew I had nebs and treatments to get done as well. Cf definitely ages us (well at least some of us) beyond our years experience wise.
 

LouLou

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

I'm the odd one - I've always had a completely normal social life.



I'm sure a lot has to do with my CF being so mild.



But a lot had to do with how my parents raised me as well - I never felt different, I was never treated differently, etc. I'm short, so what? I'm skinny, so what? I also have a cool shaking Vest and an electric cigarette called a neb.



I think CF can affect you socially if you let it. It's your choice.</end quote></div>


I agree with Amy on this one completely. I will say that in high school I was the go to person in my posse to find out what was happening. I was known as the planner. Is this cf related? Who knows but it could be because I had my sh_i_t together because I wanted to have fun but knew I had nebs and treatments to get done as well. Cf definitely ages us (well at least some of us) beyond our years experience wise.
 

Scarlett81

New member
Yes it does affect my social life and there are times i feel left out, or forgotten like the last person said. Not often, but sometimes it does happen. Friends aren't going to drop their whole life for one person, so I don't expect that. I don't expect people to change their plans for me, but it does make me feel bad sometimes.
The only time this is a problem is if its the winter-i just can't be out too long in the cold, esp walking around nyc. If I have just gotten over something or am tired I can't stay out late. I have to be home by 12, sometimes earlier. I am not a late person at all. So if we meet friends in nyc for dinner, we bolt by 10 or 11-when their night is just getting started!
We try to take our own cars to things so we don't feel bad making others leave earlier too. my hubby parks the car close to wherever we are going so I don't have to walk in the cold too much-things like that.
For me it doesn't bug me too much but i do feel bad for my hubby, having to adjust his social life too.
As a kid, cf didn't affect my social life or friends ever.
 

Scarlett81

New member
Yes it does affect my social life and there are times i feel left out, or forgotten like the last person said. Not often, but sometimes it does happen. Friends aren't going to drop their whole life for one person, so I don't expect that. I don't expect people to change their plans for me, but it does make me feel bad sometimes.
The only time this is a problem is if its the winter-i just can't be out too long in the cold, esp walking around nyc. If I have just gotten over something or am tired I can't stay out late. I have to be home by 12, sometimes earlier. I am not a late person at all. So if we meet friends in nyc for dinner, we bolt by 10 or 11-when their night is just getting started!
We try to take our own cars to things so we don't feel bad making others leave earlier too. my hubby parks the car close to wherever we are going so I don't have to walk in the cold too much-things like that.
For me it doesn't bug me too much but i do feel bad for my hubby, having to adjust his social life too.
As a kid, cf didn't affect my social life or friends ever.
 

Scarlett81

New member
Yes it does affect my social life and there are times i feel left out, or forgotten like the last person said. Not often, but sometimes it does happen. Friends aren't going to drop their whole life for one person, so I don't expect that. I don't expect people to change their plans for me, but it does make me feel bad sometimes.
The only time this is a problem is if its the winter-i just can't be out too long in the cold, esp walking around nyc. If I have just gotten over something or am tired I can't stay out late. I have to be home by 12, sometimes earlier. I am not a late person at all. So if we meet friends in nyc for dinner, we bolt by 10 or 11-when their night is just getting started!
We try to take our own cars to things so we don't feel bad making others leave earlier too. my hubby parks the car close to wherever we are going so I don't have to walk in the cold too much-things like that.
For me it doesn't bug me too much but i do feel bad for my hubby, having to adjust his social life too.
As a kid, cf didn't affect my social life or friends ever.
 

Allie

New member
Ry had more social issues when he was a kid, not because he had Cf, but because he was always so small, which, granted was a result of the Cf, but that was why he was teased. But he still managed to find a best friend at the age of 9, that he stayed close with until the day he died, and by high school, he was quite popular. Nominated for Ice Prince (Winter formal prom king, I guess), in a bunch of clubs, theater, dated around...no problem. I think some of the resilience and sense of humor he had were because of the early struggles. He got very good at comebacks, and just letting things roll off of his back. Parents nowadays tend to pull kids that are getting teased (because they're 'special snowflakes' I suppose), but it was accepted as part of the blackboard jungle back then, so Ry toughed it out. And I toughed it out, I was teased too. It sucks at the time, but it goes away, and you learn something from it.

Once Ry hit high school, through when we had Ahava, he had a very active social life, and was known as a friendly, outgoing guy that was fun to be around. He, like Lauren, planned out what he'd have to do, doing his treatments earlier so he could stay out at night, giving himself a day after to rest, but he made a social life a priority. I think part of this was also because his parents raised him to be a normal person, with normal responsibilities and treated like every other kid on the block. So he didn't learn how to be 'different', if that makes sense. He made his Cf fit his life as much as possible, not the other way around.

When we had Ahava, his social activities slowed, but more because we had a kid than CF. His social life took a big blow when he started fighting with the cepacia, but even when he was on o2, he found time to go to the local (smokeless, mind you) pub with his friends, watch soccer, and have a beer. When thigns got worse, his friends just came over here. I guess I never really thought about the social life. I knew it should affect it, but Ry never seemed to let it get in the way much.

One thing I will say is don't always expect your friends to plan activities and invite you if you frequently turn them down. Plan them yourself, that you know you can do, and all of you can enjoy. Maybe then you won't feel so left out.

I ramble, but I hope this helps.
 

Allie

New member
Ry had more social issues when he was a kid, not because he had Cf, but because he was always so small, which, granted was a result of the Cf, but that was why he was teased. But he still managed to find a best friend at the age of 9, that he stayed close with until the day he died, and by high school, he was quite popular. Nominated for Ice Prince (Winter formal prom king, I guess), in a bunch of clubs, theater, dated around...no problem. I think some of the resilience and sense of humor he had were because of the early struggles. He got very good at comebacks, and just letting things roll off of his back. Parents nowadays tend to pull kids that are getting teased (because they're 'special snowflakes' I suppose), but it was accepted as part of the blackboard jungle back then, so Ry toughed it out. And I toughed it out, I was teased too. It sucks at the time, but it goes away, and you learn something from it.

Once Ry hit high school, through when we had Ahava, he had a very active social life, and was known as a friendly, outgoing guy that was fun to be around. He, like Lauren, planned out what he'd have to do, doing his treatments earlier so he could stay out at night, giving himself a day after to rest, but he made a social life a priority. I think part of this was also because his parents raised him to be a normal person, with normal responsibilities and treated like every other kid on the block. So he didn't learn how to be 'different', if that makes sense. He made his Cf fit his life as much as possible, not the other way around.

When we had Ahava, his social activities slowed, but more because we had a kid than CF. His social life took a big blow when he started fighting with the cepacia, but even when he was on o2, he found time to go to the local (smokeless, mind you) pub with his friends, watch soccer, and have a beer. When thigns got worse, his friends just came over here. I guess I never really thought about the social life. I knew it should affect it, but Ry never seemed to let it get in the way much.

One thing I will say is don't always expect your friends to plan activities and invite you if you frequently turn them down. Plan them yourself, that you know you can do, and all of you can enjoy. Maybe then you won't feel so left out.

I ramble, but I hope this helps.
 

Allie

New member
Ry had more social issues when he was a kid, not because he had Cf, but because he was always so small, which, granted was a result of the Cf, but that was why he was teased. But he still managed to find a best friend at the age of 9, that he stayed close with until the day he died, and by high school, he was quite popular. Nominated for Ice Prince (Winter formal prom king, I guess), in a bunch of clubs, theater, dated around...no problem. I think some of the resilience and sense of humor he had were because of the early struggles. He got very good at comebacks, and just letting things roll off of his back. Parents nowadays tend to pull kids that are getting teased (because they're 'special snowflakes' I suppose), but it was accepted as part of the blackboard jungle back then, so Ry toughed it out. And I toughed it out, I was teased too. It sucks at the time, but it goes away, and you learn something from it.

Once Ry hit high school, through when we had Ahava, he had a very active social life, and was known as a friendly, outgoing guy that was fun to be around. He, like Lauren, planned out what he'd have to do, doing his treatments earlier so he could stay out at night, giving himself a day after to rest, but he made a social life a priority. I think part of this was also because his parents raised him to be a normal person, with normal responsibilities and treated like every other kid on the block. So he didn't learn how to be 'different', if that makes sense. He made his Cf fit his life as much as possible, not the other way around.

When we had Ahava, his social activities slowed, but more because we had a kid than CF. His social life took a big blow when he started fighting with the cepacia, but even when he was on o2, he found time to go to the local (smokeless, mind you) pub with his friends, watch soccer, and have a beer. When thigns got worse, his friends just came over here. I guess I never really thought about the social life. I knew it should affect it, but Ry never seemed to let it get in the way much.

One thing I will say is don't always expect your friends to plan activities and invite you if you frequently turn them down. Plan them yourself, that you know you can do, and all of you can enjoy. Maybe then you won't feel so left out.

I ramble, but I hope this helps.
 

clinging2faith

New member
well for those who believe that having a social life is a choice one makes
all i have to say is:
just wait till cf hits your sinus and gets so bad that you cant move or get up from bed or sitting for hours and no noise, and you can tell me then how much social life you made and how long it lasted. Specially if your sinus cf problem did not go away. It can be sinus, migraines, bad headaches, lots of pain it is the last thing "to go partying" (as much as we desire it) that our bodies want and need.

Being smart one has to really pamper the body the only one we have. Partying a lot to say one has a social life, when one is very sick, is very damaging in the health of the prson who is very ill and does party. I am speaking for the cf thta affects sinus and other severe pain inducing complications where outside stimuli cannot be tolerated.

When a person goes into a hospital to visit one has to stay quiet right? because of respect to those whodont feel ill and their need for quiet and healing. There's even hours posted for visitng hours because of this, a patient, a person with a chronic illness which is debilitating has to take a lot of rest into serious consideration. That is the only way the body heals itself.

So I dont agree that social life is a choice we make (when we are ill with cf and its many complications for many of us who have a lot to deal with about them).
Sure I , too, in my younger years was very outgoing and I achieved a lot, through social life, through extensive travelling (from the south pole to the north pole), thru hurricane relief work, many trips to a distant beach liket he one feautered in "The Beach". That was 15yrs + ago. When my body was healthier and CF had not progressed to the present stages and Im not even near death. I am just having complications. Lots of pain. Lots of ear aches, face and head pains. Its impossible to go out at times.

So those who can have a social life are definetely in most ways doing a lot better than othrs who are not and thus unable to socialize much or as much.
 

clinging2faith

New member
well for those who believe that having a social life is a choice one makes
all i have to say is:
just wait till cf hits your sinus and gets so bad that you cant move or get up from bed or sitting for hours and no noise, and you can tell me then how much social life you made and how long it lasted. Specially if your sinus cf problem did not go away. It can be sinus, migraines, bad headaches, lots of pain it is the last thing "to go partying" (as much as we desire it) that our bodies want and need.

Being smart one has to really pamper the body the only one we have. Partying a lot to say one has a social life, when one is very sick, is very damaging in the health of the prson who is very ill and does party. I am speaking for the cf thta affects sinus and other severe pain inducing complications where outside stimuli cannot be tolerated.

When a person goes into a hospital to visit one has to stay quiet right? because of respect to those whodont feel ill and their need for quiet and healing. There's even hours posted for visitng hours because of this, a patient, a person with a chronic illness which is debilitating has to take a lot of rest into serious consideration. That is the only way the body heals itself.

So I dont agree that social life is a choice we make (when we are ill with cf and its many complications for many of us who have a lot to deal with about them).
Sure I , too, in my younger years was very outgoing and I achieved a lot, through social life, through extensive travelling (from the south pole to the north pole), thru hurricane relief work, many trips to a distant beach liket he one feautered in "The Beach". That was 15yrs + ago. When my body was healthier and CF had not progressed to the present stages and Im not even near death. I am just having complications. Lots of pain. Lots of ear aches, face and head pains. Its impossible to go out at times.

So those who can have a social life are definetely in most ways doing a lot better than othrs who are not and thus unable to socialize much or as much.
 

clinging2faith

New member
well for those who believe that having a social life is a choice one makes
all i have to say is:
just wait till cf hits your sinus and gets so bad that you cant move or get up from bed or sitting for hours and no noise, and you can tell me then how much social life you made and how long it lasted. Specially if your sinus cf problem did not go away. It can be sinus, migraines, bad headaches, lots of pain it is the last thing "to go partying" (as much as we desire it) that our bodies want and need.

Being smart one has to really pamper the body the only one we have. Partying a lot to say one has a social life, when one is very sick, is very damaging in the health of the prson who is very ill and does party. I am speaking for the cf thta affects sinus and other severe pain inducing complications where outside stimuli cannot be tolerated.

When a person goes into a hospital to visit one has to stay quiet right? because of respect to those whodont feel ill and their need for quiet and healing. There's even hours posted for visitng hours because of this, a patient, a person with a chronic illness which is debilitating has to take a lot of rest into serious consideration. That is the only way the body heals itself.

So I dont agree that social life is a choice we make (when we are ill with cf and its many complications for many of us who have a lot to deal with about them).
Sure I , too, in my younger years was very outgoing and I achieved a lot, through social life, through extensive travelling (from the south pole to the north pole), thru hurricane relief work, many trips to a distant beach liket he one feautered in "The Beach". That was 15yrs + ago. When my body was healthier and CF had not progressed to the present stages and Im not even near death. I am just having complications. Lots of pain. Lots of ear aches, face and head pains. Its impossible to go out at times.

So those who can have a social life are definetely in most ways doing a lot better than othrs who are not and thus unable to socialize much or as much.
 
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