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Making plans to do stuff with other people-need advice.

L

lightNlife

New member
Your timing of this question couldn't be better. I was recently in a situation where I was sharing a room with a friend who didn't quite "get" the rigors of CF and how I couldn't just "pick up and go" when I wanted to.

I needed to assert myself, otherwise I was going to have a MISERABLE time. She wanted to stay up all night talking, I told her "I'm going to bed now." She continued to talk to me, but I just pretended I was asleep and rolled over to face the wall. I felt bad for deceiving her, but I got over it. My health is #1.

The other problem we had was our schedule. We had workshops scheduled ALL day. I made the decision on the first day that I was going to be skipping one in the morning, and one in the afternoon. I didn't make apologies for it, I just slept as long as I needed to, and came back to the room when I needed to as well.

I think when it comes to asking for or needing special considerations because of my health, I do a little of both as far as asking people to wait or just not telling them. I know which things I can do on the sly (I can slip away and do a neb treatment) and which things I need to speak up for myself about (getting enough sleep or needing to stop somewhere for food or a bathroom.)

I've learned the things I need to "get me by." Before I even left for the conference I made a list of things that I needed to keep on me at all times, just in case I couldn't stick to "MY" routine. This included:

1. Extra 'zymes
2. Mucinex (to tide me over until I could get to my HS treatment)
3. Bananas and Fig Newtons (high calorie high energy foods)
4. A bottle of water
5. A packet or two of salt (to add to my water)

As CFers we need to be firm when it comes to our daily needs, but somewhat flexible about when those needs are met. Unless I'm on IVs, where schedule is a priority, I'm pretty flexible. Some days I put my makeup on at home and do my first neb treatment in the car. Others I do my neb at home and put my makeup on in my office. Those are just small examples, but I think you get the idea.

Good luck!
 
L

lightNlife

New member
Your timing of this question couldn't be better. I was recently in a situation where I was sharing a room with a friend who didn't quite "get" the rigors of CF and how I couldn't just "pick up and go" when I wanted to.

I needed to assert myself, otherwise I was going to have a MISERABLE time. She wanted to stay up all night talking, I told her "I'm going to bed now." She continued to talk to me, but I just pretended I was asleep and rolled over to face the wall. I felt bad for deceiving her, but I got over it. My health is #1.

The other problem we had was our schedule. We had workshops scheduled ALL day. I made the decision on the first day that I was going to be skipping one in the morning, and one in the afternoon. I didn't make apologies for it, I just slept as long as I needed to, and came back to the room when I needed to as well.

I think when it comes to asking for or needing special considerations because of my health, I do a little of both as far as asking people to wait or just not telling them. I know which things I can do on the sly (I can slip away and do a neb treatment) and which things I need to speak up for myself about (getting enough sleep or needing to stop somewhere for food or a bathroom.)

I've learned the things I need to "get me by." Before I even left for the conference I made a list of things that I needed to keep on me at all times, just in case I couldn't stick to "MY" routine. This included:

1. Extra 'zymes
2. Mucinex (to tide me over until I could get to my HS treatment)
3. Bananas and Fig Newtons (high calorie high energy foods)
4. A bottle of water
5. A packet or two of salt (to add to my water)

As CFers we need to be firm when it comes to our daily needs, but somewhat flexible about when those needs are met. Unless I'm on IVs, where schedule is a priority, I'm pretty flexible. Some days I put my makeup on at home and do my first neb treatment in the car. Others I do my neb at home and put my makeup on in my office. Those are just small examples, but I think you get the idea.

Good luck!
 
L

lightNlife

New member
Your timing of this question couldn't be better. I was recently in a situation where I was sharing a room with a friend who didn't quite "get" the rigors of CF and how I couldn't just "pick up and go" when I wanted to.

I needed to assert myself, otherwise I was going to have a MISERABLE time. She wanted to stay up all night talking, I told her "I'm going to bed now." She continued to talk to me, but I just pretended I was asleep and rolled over to face the wall. I felt bad for deceiving her, but I got over it. My health is #1.

The other problem we had was our schedule. We had workshops scheduled ALL day. I made the decision on the first day that I was going to be skipping one in the morning, and one in the afternoon. I didn't make apologies for it, I just slept as long as I needed to, and came back to the room when I needed to as well.

I think when it comes to asking for or needing special considerations because of my health, I do a little of both as far as asking people to wait or just not telling them. I know which things I can do on the sly (I can slip away and do a neb treatment) and which things I need to speak up for myself about (getting enough sleep or needing to stop somewhere for food or a bathroom.)

I've learned the things I need to "get me by." Before I even left for the conference I made a list of things that I needed to keep on me at all times, just in case I couldn't stick to "MY" routine. This included:

1. Extra 'zymes
2. Mucinex (to tide me over until I could get to my HS treatment)
3. Bananas and Fig Newtons (high calorie high energy foods)
4. A bottle of water
5. A packet or two of salt (to add to my water)

As CFers we need to be firm when it comes to our daily needs, but somewhat flexible about when those needs are met. Unless I'm on IVs, where schedule is a priority, I'm pretty flexible. Some days I put my makeup on at home and do my first neb treatment in the car. Others I do my neb at home and put my makeup on in my office. Those are just small examples, but I think you get the idea.

Good luck!
 
L

lightNlife

New member
Your timing of this question couldn't be better. I was recently in a situation where I was sharing a room with a friend who didn't quite "get" the rigors of CF and how I couldn't just "pick up and go" when I wanted to.

I needed to assert myself, otherwise I was going to have a MISERABLE time. She wanted to stay up all night talking, I told her "I'm going to bed now." She continued to talk to me, but I just pretended I was asleep and rolled over to face the wall. I felt bad for deceiving her, but I got over it. My health is #1.

The other problem we had was our schedule. We had workshops scheduled ALL day. I made the decision on the first day that I was going to be skipping one in the morning, and one in the afternoon. I didn't make apologies for it, I just slept as long as I needed to, and came back to the room when I needed to as well.

I think when it comes to asking for or needing special considerations because of my health, I do a little of both as far as asking people to wait or just not telling them. I know which things I can do on the sly (I can slip away and do a neb treatment) and which things I need to speak up for myself about (getting enough sleep or needing to stop somewhere for food or a bathroom.)

I've learned the things I need to "get me by." Before I even left for the conference I made a list of things that I needed to keep on me at all times, just in case I couldn't stick to "MY" routine. This included:

1. Extra 'zymes
2. Mucinex (to tide me over until I could get to my HS treatment)
3. Bananas and Fig Newtons (high calorie high energy foods)
4. A bottle of water
5. A packet or two of salt (to add to my water)

As CFers we need to be firm when it comes to our daily needs, but somewhat flexible about when those needs are met. Unless I'm on IVs, where schedule is a priority, I'm pretty flexible. Some days I put my makeup on at home and do my first neb treatment in the car. Others I do my neb at home and put my makeup on in my office. Those are just small examples, but I think you get the idea.

Good luck!
 
L

lightNlife

New member
Your timing of this question couldn't be better. I was recently in a situation where I was sharing a room with a friend who didn't quite "get" the rigors of CF and how I couldn't just "pick up and go" when I wanted to.
<br />
<br />I needed to assert myself, otherwise I was going to have a MISERABLE time. She wanted to stay up all night talking, I told her "I'm going to bed now." She continued to talk to me, but I just pretended I was asleep and rolled over to face the wall. I felt bad for deceiving her, but I got over it. My health is #1.
<br />
<br />The other problem we had was our schedule. We had workshops scheduled ALL day. I made the decision on the first day that I was going to be skipping one in the morning, and one in the afternoon. I didn't make apologies for it, I just slept as long as I needed to, and came back to the room when I needed to as well.
<br />
<br />I think when it comes to asking for or needing special considerations because of my health, I do a little of both as far as asking people to wait or just not telling them. I know which things I can do on the sly (I can slip away and do a neb treatment) and which things I need to speak up for myself about (getting enough sleep or needing to stop somewhere for food or a bathroom.)
<br />
<br />I've learned the things I need to "get me by." Before I even left for the conference I made a list of things that I needed to keep on me at all times, just in case I couldn't stick to "MY" routine. This included:
<br />
<br />1. Extra 'zymes
<br />2. Mucinex (to tide me over until I could get to my HS treatment)
<br />3. Bananas and Fig Newtons (high calorie high energy foods)
<br />4. A bottle of water
<br />5. A packet or two of salt (to add to my water)
<br />
<br />As CFers we need to be firm when it comes to our daily needs, but somewhat flexible about when those needs are met. Unless I'm on IVs, where schedule is a priority, I'm pretty flexible. Some days I put my makeup on at home and do my first neb treatment in the car. Others I do my neb at home and put my makeup on in my office. Those are just small examples, but I think you get the idea.
<br />
<br />Good luck!
 
W

wuffles

New member
Obviously everyone handles these situations differently. I'm relatively open about my CF, however I don't believe you should have to tell everyone everything in order for them to "understand" or at least be supportive.

For some people, it works to tell all, but for some it doesn't. Some people find it easy to deal with the explanations, reactions, misunderstandings. Some people are happier keeping the details to themselves and dealing with the outcomes. Personally I use the "little bit of both" way. It won't kill people if I turn up half an hour late, but in turn, it won't kill them if they don't change their plans! It's definitely a balancing act and I judge it on individual situations...

As an example, I play team sport and a lot of the time the girls in my team like to go out after training or games for drinks or dinner. Most of the time I feel like I just can't handle it -- after two hours of exercise all I want to do is get home, eat, do treatments, go to bed. They don't know the details of CF so I usually say that I'm tired, or hungry, or have some things to do before I get to bed. People are generally accepting of that. When they're not I'm willing to deal with it <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

wuffles

New member
Obviously everyone handles these situations differently. I'm relatively open about my CF, however I don't believe you should have to tell everyone everything in order for them to "understand" or at least be supportive.

For some people, it works to tell all, but for some it doesn't. Some people find it easy to deal with the explanations, reactions, misunderstandings. Some people are happier keeping the details to themselves and dealing with the outcomes. Personally I use the "little bit of both" way. It won't kill people if I turn up half an hour late, but in turn, it won't kill them if they don't change their plans! It's definitely a balancing act and I judge it on individual situations...

As an example, I play team sport and a lot of the time the girls in my team like to go out after training or games for drinks or dinner. Most of the time I feel like I just can't handle it -- after two hours of exercise all I want to do is get home, eat, do treatments, go to bed. They don't know the details of CF so I usually say that I'm tired, or hungry, or have some things to do before I get to bed. People are generally accepting of that. When they're not I'm willing to deal with it <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

wuffles

New member
Obviously everyone handles these situations differently. I'm relatively open about my CF, however I don't believe you should have to tell everyone everything in order for them to "understand" or at least be supportive.

For some people, it works to tell all, but for some it doesn't. Some people find it easy to deal with the explanations, reactions, misunderstandings. Some people are happier keeping the details to themselves and dealing with the outcomes. Personally I use the "little bit of both" way. It won't kill people if I turn up half an hour late, but in turn, it won't kill them if they don't change their plans! It's definitely a balancing act and I judge it on individual situations...

As an example, I play team sport and a lot of the time the girls in my team like to go out after training or games for drinks or dinner. Most of the time I feel like I just can't handle it -- after two hours of exercise all I want to do is get home, eat, do treatments, go to bed. They don't know the details of CF so I usually say that I'm tired, or hungry, or have some things to do before I get to bed. People are generally accepting of that. When they're not I'm willing to deal with it <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

wuffles

New member
Obviously everyone handles these situations differently. I'm relatively open about my CF, however I don't believe you should have to tell everyone everything in order for them to "understand" or at least be supportive.

For some people, it works to tell all, but for some it doesn't. Some people find it easy to deal with the explanations, reactions, misunderstandings. Some people are happier keeping the details to themselves and dealing with the outcomes. Personally I use the "little bit of both" way. It won't kill people if I turn up half an hour late, but in turn, it won't kill them if they don't change their plans! It's definitely a balancing act and I judge it on individual situations...

As an example, I play team sport and a lot of the time the girls in my team like to go out after training or games for drinks or dinner. Most of the time I feel like I just can't handle it -- after two hours of exercise all I want to do is get home, eat, do treatments, go to bed. They don't know the details of CF so I usually say that I'm tired, or hungry, or have some things to do before I get to bed. People are generally accepting of that. When they're not I'm willing to deal with it <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

wuffles

New member
Obviously everyone handles these situations differently. I'm relatively open about my CF, however I don't believe you should have to tell everyone everything in order for them to "understand" or at least be supportive.
<br />
<br />For some people, it works to tell all, but for some it doesn't. Some people find it easy to deal with the explanations, reactions, misunderstandings. Some people are happier keeping the details to themselves and dealing with the outcomes. Personally I use the "little bit of both" way. It won't kill people if I turn up half an hour late, but in turn, it won't kill them if they don't change their plans! It's definitely a balancing act and I judge it on individual situations...
<br />
<br />As an example, I play team sport and a lot of the time the girls in my team like to go out after training or games for drinks or dinner. Most of the time I feel like I just can't handle it -- after two hours of exercise all I want to do is get home, eat, do treatments, go to bed. They don't know the details of CF so I usually say that I'm tired, or hungry, or have some things to do before I get to bed. People are generally accepting of that. When they're not I'm willing to deal with it <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

mom2lillian

New member
Bonnie-being 'new' to cf can add to this problem, for example poeple still ask me to go to the bar and I say well if you can find one with no smoking or one where there is a non-smoking section I will go instead of just saying 'no' this explains that A-I want to go and B-I cant take smoke without giving a lecture.

also being new to a strict regiment (I was lax before) my husband will still forget and say if we are running late for work he will say "we are supposed to leave in 5 minutes" and I am still hooked to my vest. To me it makes me fele like he is saying to quit my treatments (which is not what he means AT ALL after talking with him) so I used to get mad, now I understand he just freaks about the time no matter if it is him getting our daughter ready or me doing treatments so I look at him and say "are you sayign you want me to quit doing my treatment so we can leave on time?" or something along those lines and then he says NO no, I am just realizing we're late etc. Also I used to skip treatments so when I first started being compliant hubby would say "well cant you jsut do that later" and so I woudl explain to him NO and why etc and now he 'gets' it.

hope that helps <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
M

mom2lillian

New member
Bonnie-being 'new' to cf can add to this problem, for example poeple still ask me to go to the bar and I say well if you can find one with no smoking or one where there is a non-smoking section I will go instead of just saying 'no' this explains that A-I want to go and B-I cant take smoke without giving a lecture.

also being new to a strict regiment (I was lax before) my husband will still forget and say if we are running late for work he will say "we are supposed to leave in 5 minutes" and I am still hooked to my vest. To me it makes me fele like he is saying to quit my treatments (which is not what he means AT ALL after talking with him) so I used to get mad, now I understand he just freaks about the time no matter if it is him getting our daughter ready or me doing treatments so I look at him and say "are you sayign you want me to quit doing my treatment so we can leave on time?" or something along those lines and then he says NO no, I am just realizing we're late etc. Also I used to skip treatments so when I first started being compliant hubby would say "well cant you jsut do that later" and so I woudl explain to him NO and why etc and now he 'gets' it.

hope that helps <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
M

mom2lillian

New member
Bonnie-being 'new' to cf can add to this problem, for example poeple still ask me to go to the bar and I say well if you can find one with no smoking or one where there is a non-smoking section I will go instead of just saying 'no' this explains that A-I want to go and B-I cant take smoke without giving a lecture.

also being new to a strict regiment (I was lax before) my husband will still forget and say if we are running late for work he will say "we are supposed to leave in 5 minutes" and I am still hooked to my vest. To me it makes me fele like he is saying to quit my treatments (which is not what he means AT ALL after talking with him) so I used to get mad, now I understand he just freaks about the time no matter if it is him getting our daughter ready or me doing treatments so I look at him and say "are you sayign you want me to quit doing my treatment so we can leave on time?" or something along those lines and then he says NO no, I am just realizing we're late etc. Also I used to skip treatments so when I first started being compliant hubby would say "well cant you jsut do that later" and so I woudl explain to him NO and why etc and now he 'gets' it.

hope that helps <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
M

mom2lillian

New member
Bonnie-being 'new' to cf can add to this problem, for example poeple still ask me to go to the bar and I say well if you can find one with no smoking or one where there is a non-smoking section I will go instead of just saying 'no' this explains that A-I want to go and B-I cant take smoke without giving a lecture.

also being new to a strict regiment (I was lax before) my husband will still forget and say if we are running late for work he will say "we are supposed to leave in 5 minutes" and I am still hooked to my vest. To me it makes me fele like he is saying to quit my treatments (which is not what he means AT ALL after talking with him) so I used to get mad, now I understand he just freaks about the time no matter if it is him getting our daughter ready or me doing treatments so I look at him and say "are you sayign you want me to quit doing my treatment so we can leave on time?" or something along those lines and then he says NO no, I am just realizing we're late etc. Also I used to skip treatments so when I first started being compliant hubby would say "well cant you jsut do that later" and so I woudl explain to him NO and why etc and now he 'gets' it.

hope that helps <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
M

mom2lillian

New member
Bonnie-being 'new' to cf can add to this problem, for example poeple still ask me to go to the bar and I say well if you can find one with no smoking or one where there is a non-smoking section I will go instead of just saying 'no' this explains that A-I want to go and B-I cant take smoke without giving a lecture.
<br />
<br />also being new to a strict regiment (I was lax before) my husband will still forget and say if we are running late for work he will say "we are supposed to leave in 5 minutes" and I am still hooked to my vest. To me it makes me fele like he is saying to quit my treatments (which is not what he means AT ALL after talking with him) so I used to get mad, now I understand he just freaks about the time no matter if it is him getting our daughter ready or me doing treatments so I look at him and say "are you sayign you want me to quit doing my treatment so we can leave on time?" or something along those lines and then he says NO no, I am just realizing we're late etc. Also I used to skip treatments so when I first started being compliant hubby would say "well cant you jsut do that later" and so I woudl explain to him NO and why etc and now he 'gets' it.
<br />
<br />hope that helps <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
If we know ahead of time about an event, we try to figure out how early we have to do vest treatments; however, if it's tobi, I really don't really want to start it too late or then the last one of the evening gets way tooo late. My MIL likes to be the first one to arrive at a social event and the last to leave and they always like to ride with us, so DH has had to say fine, but we have to leave home by this time. I tend to get nervous about it, but DH said if they make a fuss, we won't go with them again.

Shortly after DS was born we attended a cousin's wedding and we got there just as the bride was walking in. We'd taken separate cars and my MIL was sooo embarrassed that we were so late we had to stand in the back. The bride was just happy we made it.
 
R

Ratatosk

Administrator
Staff member
If we know ahead of time about an event, we try to figure out how early we have to do vest treatments; however, if it's tobi, I really don't really want to start it too late or then the last one of the evening gets way tooo late. My MIL likes to be the first one to arrive at a social event and the last to leave and they always like to ride with us, so DH has had to say fine, but we have to leave home by this time. I tend to get nervous about it, but DH said if they make a fuss, we won't go with them again.

Shortly after DS was born we attended a cousin's wedding and we got there just as the bride was walking in. We'd taken separate cars and my MIL was sooo embarrassed that we were so late we had to stand in the back. The bride was just happy we made it.
 
R

Ratatosk

Administrator
Staff member
If we know ahead of time about an event, we try to figure out how early we have to do vest treatments; however, if it's tobi, I really don't really want to start it too late or then the last one of the evening gets way tooo late. My MIL likes to be the first one to arrive at a social event and the last to leave and they always like to ride with us, so DH has had to say fine, but we have to leave home by this time. I tend to get nervous about it, but DH said if they make a fuss, we won't go with them again.

Shortly after DS was born we attended a cousin's wedding and we got there just as the bride was walking in. We'd taken separate cars and my MIL was sooo embarrassed that we were so late we had to stand in the back. The bride was just happy we made it.
 
R

Ratatosk

Administrator
Staff member
If we know ahead of time about an event, we try to figure out how early we have to do vest treatments; however, if it's tobi, I really don't really want to start it too late or then the last one of the evening gets way tooo late. My MIL likes to be the first one to arrive at a social event and the last to leave and they always like to ride with us, so DH has had to say fine, but we have to leave home by this time. I tend to get nervous about it, but DH said if they make a fuss, we won't go with them again.

Shortly after DS was born we attended a cousin's wedding and we got there just as the bride was walking in. We'd taken separate cars and my MIL was sooo embarrassed that we were so late we had to stand in the back. The bride was just happy we made it.
 
R

Ratatosk

Administrator
Staff member
If we know ahead of time about an event, we try to figure out how early we have to do vest treatments; however, if it's tobi, I really don't really want to start it too late or then the last one of the evening gets way tooo late. My MIL likes to be the first one to arrive at a social event and the last to leave and they always like to ride with us, so DH has had to say fine, but we have to leave home by this time. I tend to get nervous about it, but DH said if they make a fuss, we won't go with them again.
<br />
<br />Shortly after DS was born we attended a cousin's wedding and we got there just as the bride was walking in. We'd taken separate cars and my MIL was sooo embarrassed that we were so late we had to stand in the back. The bride was just happy we made it.
 
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