Living with CF

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gunelle

Guest
Hi, I am interested in hearing about people's experiences regarding social matters, with CF.

E.g. on wednesday a co-worker asked me if I wanted to come to the gym with her, which is close to our workplace. I would really love to go to the gym, because I need the exercise for my lungs. But I had to say no, that I can't because I don't have time (I have 1 hour and 10 min. to commute home, and 1 hour for treatments, so when I'm finished it's 20:30). My co-worker made a comment to one of our other colleauges like "no she can't she has to go home and watch tv" and I said "no, I have one hour to do my treatments, thank you..." but I don't know if she heard or understood. It's so frustrating. We speak english together, but neither of us are native english, so maybe a bit of language barrier is also present.

I just want that people respect what I have (I have mentioned to her earlier that I have CF, but maybe she didn't understand the time it takes out of the day).

My boyfriend and my family in law understand, we live close, so they are used to the whole deal. But the rest of my friends and family are not that uses to it, that I have limitations now (I was only diagnosed a year and a half ago).

Anyway, anyone has stories about living with CF?
 
G

gunelle

Guest
Hi, I am interested in hearing about people's experiences regarding social matters, with CF.

E.g. on wednesday a co-worker asked me if I wanted to come to the gym with her, which is close to our workplace. I would really love to go to the gym, because I need the exercise for my lungs. But I had to say no, that I can't because I don't have time (I have 1 hour and 10 min. to commute home, and 1 hour for treatments, so when I'm finished it's 20:30). My co-worker made a comment to one of our other colleauges like "no she can't she has to go home and watch tv" and I said "no, I have one hour to do my treatments, thank you..." but I don't know if she heard or understood. It's so frustrating. We speak english together, but neither of us are native english, so maybe a bit of language barrier is also present.

I just want that people respect what I have (I have mentioned to her earlier that I have CF, but maybe she didn't understand the time it takes out of the day).

My boyfriend and my family in law understand, we live close, so they are used to the whole deal. But the rest of my friends and family are not that uses to it, that I have limitations now (I was only diagnosed a year and a half ago).

Anyway, anyone has stories about living with CF?
 
G

gunelle

Guest
Hi, I am interested in hearing about people's experiences regarding social matters, with CF.

E.g. on wednesday a co-worker asked me if I wanted to come to the gym with her, which is close to our workplace. I would really love to go to the gym, because I need the exercise for my lungs. But I had to say no, that I can't because I don't have time (I have 1 hour and 10 min. to commute home, and 1 hour for treatments, so when I'm finished it's 20:30). My co-worker made a comment to one of our other colleauges like "no she can't she has to go home and watch tv" and I said "no, I have one hour to do my treatments, thank you..." but I don't know if she heard or understood. It's so frustrating. We speak english together, but neither of us are native english, so maybe a bit of language barrier is also present.

I just want that people respect what I have (I have mentioned to her earlier that I have CF, but maybe she didn't understand the time it takes out of the day).

My boyfriend and my family in law understand, we live close, so they are used to the whole deal. But the rest of my friends and family are not that uses to it, that I have limitations now (I was only diagnosed a year and a half ago).

Anyway, anyone has stories about living with CF?
 
G

gunelle

Guest
Hi, I am interested in hearing about people's experiences regarding social matters, with CF.

E.g. on wednesday a co-worker asked me if I wanted to come to the gym with her, which is close to our workplace. I would really love to go to the gym, because I need the exercise for my lungs. But I had to say no, that I can't because I don't have time (I have 1 hour and 10 min. to commute home, and 1 hour for treatments, so when I'm finished it's 20:30). My co-worker made a comment to one of our other colleauges like "no she can't she has to go home and watch tv" and I said "no, I have one hour to do my treatments, thank you..." but I don't know if she heard or understood. It's so frustrating. We speak english together, but neither of us are native english, so maybe a bit of language barrier is also present.

I just want that people respect what I have (I have mentioned to her earlier that I have CF, but maybe she didn't understand the time it takes out of the day).

My boyfriend and my family in law understand, we live close, so they are used to the whole deal. But the rest of my friends and family are not that uses to it, that I have limitations now (I was only diagnosed a year and a half ago).

Anyway, anyone has stories about living with CF?
 
G

gunelle

Guest
Hi, I am interested in hearing about people's experiences regarding social matters, with CF.
<br />
<br />E.g. on wednesday a co-worker asked me if I wanted to come to the gym with her, which is close to our workplace. I would really love to go to the gym, because I need the exercise for my lungs. But I had to say no, that I can't because I don't have time (I have 1 hour and 10 min. to commute home, and 1 hour for treatments, so when I'm finished it's 20:30). My co-worker made a comment to one of our other colleauges like "no she can't she has to go home and watch tv" and I said "no, I have one hour to do my treatments, thank you..." but I don't know if she heard or understood. It's so frustrating. We speak english together, but neither of us are native english, so maybe a bit of language barrier is also present.
<br />
<br />I just want that people respect what I have (I have mentioned to her earlier that I have CF, but maybe she didn't understand the time it takes out of the day).
<br />
<br />My boyfriend and my family in law understand, we live close, so they are used to the whole deal. But the rest of my friends and family are not that uses to it, that I have limitations now (I was only diagnosed a year and a half ago).
<br />
<br />Anyway, anyone has stories about living with CF?
 
J

JennifersHope

New member
I think in general they probably don't understand exactly what CF entails, who could unless they were going through it or know someone close to them that is.

I would suggest printing some information off the internet about CF and handing it out to them letting them know that this is the reason you don't thave time to go to the gym.
 
J

JennifersHope

New member
I think in general they probably don't understand exactly what CF entails, who could unless they were going through it or know someone close to them that is.

I would suggest printing some information off the internet about CF and handing it out to them letting them know that this is the reason you don't thave time to go to the gym.
 
J

JennifersHope

New member
I think in general they probably don't understand exactly what CF entails, who could unless they were going through it or know someone close to them that is.

I would suggest printing some information off the internet about CF and handing it out to them letting them know that this is the reason you don't thave time to go to the gym.
 
J

JennifersHope

New member
I think in general they probably don't understand exactly what CF entails, who could unless they were going through it or know someone close to them that is.

I would suggest printing some information off the internet about CF and handing it out to them letting them know that this is the reason you don't thave time to go to the gym.
 
J

JennifersHope

New member
I think in general they probably don't understand exactly what CF entails, who could unless they were going through it or know someone close to them that is.
<br />
<br />I would suggest printing some information off the internet about CF and handing it out to them letting them know that this is the reason you don't thave time to go to the gym.
 
N

NancyLKF

New member
I don't know about living with CF as my daughter has it and she is only one. But I have heard from adults with CF that to save time they do their treatments in the car on the way to and/or from work. I guess it wouldn't work if you take public transportation, but it's an idea. When it comes to people who don't understand, sometimes I don't think they will ever understand because some people just don't want to. But I do think that handing them information might be the only way to try and get them to.
 
N

NancyLKF

New member
I don't know about living with CF as my daughter has it and she is only one. But I have heard from adults with CF that to save time they do their treatments in the car on the way to and/or from work. I guess it wouldn't work if you take public transportation, but it's an idea. When it comes to people who don't understand, sometimes I don't think they will ever understand because some people just don't want to. But I do think that handing them information might be the only way to try and get them to.
 
N

NancyLKF

New member
I don't know about living with CF as my daughter has it and she is only one. But I have heard from adults with CF that to save time they do their treatments in the car on the way to and/or from work. I guess it wouldn't work if you take public transportation, but it's an idea. When it comes to people who don't understand, sometimes I don't think they will ever understand because some people just don't want to. But I do think that handing them information might be the only way to try and get them to.
 
N

NancyLKF

New member
I don't know about living with CF as my daughter has it and she is only one. But I have heard from adults with CF that to save time they do their treatments in the car on the way to and/or from work. I guess it wouldn't work if you take public transportation, but it's an idea. When it comes to people who don't understand, sometimes I don't think they will ever understand because some people just don't want to. But I do think that handing them information might be the only way to try and get them to.
 
N

NancyLKF

New member
I don't know about living with CF as my daughter has it and she is only one. But I have heard from adults with CF that to save time they do their treatments in the car on the way to and/or from work. I guess it wouldn't work if you take public transportation, but it's an idea. When it comes to people who don't understand, sometimes I don't think they will ever understand because some people just don't want to. But I do think that handing them information might be the only way to try and get them to.
 
K

Kristen

New member
Most of my friends are really understanding about my CF and lack of time (I guess they wouldn't be my friends otherwise <img src="i/expressions/face-icon-small-wink.gif" border="0">. But, I still feel guilty about it when I have to miss out on social gatherings because I have to do my treatments and get to the gym (I feel guilty because I'm still afraid they think I don't care about hanging out with them).

At work, people are pretty understanding, although it, of course, does make it harder to make new friends when you don't have the time to do things with other people. I have explained to many people about how I have to do 30min-1hour of meds twice a day, and how I HAVE to work out to keep my lungs clear and healthy, and how I HAVE to get enough sleep to keep my immune system up, and they are usually like "Wow, that sucks" and are understanding. But, sometimes I have to tell them more than once for them to really (kind-of-sort-of) "get it". I would be really ticked-off if someone made that comment about watching TV to me!
 
K

Kristen

New member
Most of my friends are really understanding about my CF and lack of time (I guess they wouldn't be my friends otherwise <img src="i/expressions/face-icon-small-wink.gif" border="0">. But, I still feel guilty about it when I have to miss out on social gatherings because I have to do my treatments and get to the gym (I feel guilty because I'm still afraid they think I don't care about hanging out with them).

At work, people are pretty understanding, although it, of course, does make it harder to make new friends when you don't have the time to do things with other people. I have explained to many people about how I have to do 30min-1hour of meds twice a day, and how I HAVE to work out to keep my lungs clear and healthy, and how I HAVE to get enough sleep to keep my immune system up, and they are usually like "Wow, that sucks" and are understanding. But, sometimes I have to tell them more than once for them to really (kind-of-sort-of) "get it". I would be really ticked-off if someone made that comment about watching TV to me!
 
K

Kristen

New member
Most of my friends are really understanding about my CF and lack of time (I guess they wouldn't be my friends otherwise <img src="i/expressions/face-icon-small-wink.gif" border="0">. But, I still feel guilty about it when I have to miss out on social gatherings because I have to do my treatments and get to the gym (I feel guilty because I'm still afraid they think I don't care about hanging out with them).

At work, people are pretty understanding, although it, of course, does make it harder to make new friends when you don't have the time to do things with other people. I have explained to many people about how I have to do 30min-1hour of meds twice a day, and how I HAVE to work out to keep my lungs clear and healthy, and how I HAVE to get enough sleep to keep my immune system up, and they are usually like "Wow, that sucks" and are understanding. But, sometimes I have to tell them more than once for them to really (kind-of-sort-of) "get it". I would be really ticked-off if someone made that comment about watching TV to me!
 
K

Kristen

New member
Most of my friends are really understanding about my CF and lack of time (I guess they wouldn't be my friends otherwise <img src="i/expressions/face-icon-small-wink.gif" border="0">. But, I still feel guilty about it when I have to miss out on social gatherings because I have to do my treatments and get to the gym (I feel guilty because I'm still afraid they think I don't care about hanging out with them).

At work, people are pretty understanding, although it, of course, does make it harder to make new friends when you don't have the time to do things with other people. I have explained to many people about how I have to do 30min-1hour of meds twice a day, and how I HAVE to work out to keep my lungs clear and healthy, and how I HAVE to get enough sleep to keep my immune system up, and they are usually like "Wow, that sucks" and are understanding. But, sometimes I have to tell them more than once for them to really (kind-of-sort-of) "get it". I would be really ticked-off if someone made that comment about watching TV to me!
 
K

Kristen

New member
Most of my friends are really understanding about my CF and lack of time (I guess they wouldn't be my friends otherwise <img src="i/expressions/face-icon-small-wink.gif" border="0">. But, I still feel guilty about it when I have to miss out on social gatherings because I have to do my treatments and get to the gym (I feel guilty because I'm still afraid they think I don't care about hanging out with them).
<br />
<br />At work, people are pretty understanding, although it, of course, does make it harder to make new friends when you don't have the time to do things with other people. I have explained to many people about how I have to do 30min-1hour of meds twice a day, and how I HAVE to work out to keep my lungs clear and healthy, and how I HAVE to get enough sleep to keep my immune system up, and they are usually like "Wow, that sucks" and are understanding. But, sometimes I have to tell them more than once for them to really (kind-of-sort-of) "get it". I would be really ticked-off if someone made that comment about watching TV to me!
 
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