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

H

hopesiris

Guest
How do you fit in meals, treatments, etc when people change plans spontaneously and aren't thinking/aware of your needs? Do you just always cover yourself by waking earlier, having food packed, etc or do you expect your family and friends to stick with agreed on plans/wait for you? A little of both?

Now that I have a baby to get ready too, this is getting harder. "I need a treatment, it takes 25 minutes. Yes, I need to eat breakfast too." That somehow translates to maybe I'll do my treatment in 10 minutes and have a piece of string cheese for breakfast as we walk out the door.

Are CF physical needs something we should deal with mostly alone and keep to ourselves if we look healthy? Sorry if this is a stupid question, I'm an aspie (aspergers syndrome) and I really don't understand what is socially expected or how much people can emotionally handle. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Please help me understand.

Bonnie
 
H

hopesiris

Guest
How do you fit in meals, treatments, etc when people change plans spontaneously and aren't thinking/aware of your needs? Do you just always cover yourself by waking earlier, having food packed, etc or do you expect your family and friends to stick with agreed on plans/wait for you? A little of both?

Now that I have a baby to get ready too, this is getting harder. "I need a treatment, it takes 25 minutes. Yes, I need to eat breakfast too." That somehow translates to maybe I'll do my treatment in 10 minutes and have a piece of string cheese for breakfast as we walk out the door.

Are CF physical needs something we should deal with mostly alone and keep to ourselves if we look healthy? Sorry if this is a stupid question, I'm an aspie (aspergers syndrome) and I really don't understand what is socially expected or how much people can emotionally handle. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Please help me understand.

Bonnie
 
H

hopesiris

Guest
How do you fit in meals, treatments, etc when people change plans spontaneously and aren't thinking/aware of your needs? Do you just always cover yourself by waking earlier, having food packed, etc or do you expect your family and friends to stick with agreed on plans/wait for you? A little of both?

Now that I have a baby to get ready too, this is getting harder. "I need a treatment, it takes 25 minutes. Yes, I need to eat breakfast too." That somehow translates to maybe I'll do my treatment in 10 minutes and have a piece of string cheese for breakfast as we walk out the door.

Are CF physical needs something we should deal with mostly alone and keep to ourselves if we look healthy? Sorry if this is a stupid question, I'm an aspie (aspergers syndrome) and I really don't understand what is socially expected or how much people can emotionally handle. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Please help me understand.

Bonnie
 
H

hopesiris

Guest
How do you fit in meals, treatments, etc when people change plans spontaneously and aren't thinking/aware of your needs? Do you just always cover yourself by waking earlier, having food packed, etc or do you expect your family and friends to stick with agreed on plans/wait for you? A little of both?

Now that I have a baby to get ready too, this is getting harder. "I need a treatment, it takes 25 minutes. Yes, I need to eat breakfast too." That somehow translates to maybe I'll do my treatment in 10 minutes and have a piece of string cheese for breakfast as we walk out the door.

Are CF physical needs something we should deal with mostly alone and keep to ourselves if we look healthy? Sorry if this is a stupid question, I'm an aspie (aspergers syndrome) and I really don't understand what is socially expected or how much people can emotionally handle. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Please help me understand.

Bonnie
 
H

hopesiris

Guest
How do you fit in meals, treatments, etc when people change plans spontaneously and aren't thinking/aware of your needs? Do you just always cover yourself by waking earlier, having food packed, etc or do you expect your family and friends to stick with agreed on plans/wait for you? A little of both?
<br />
<br />Now that I have a baby to get ready too, this is getting harder. "I need a treatment, it takes 25 minutes. Yes, I need to eat breakfast too." That somehow translates to maybe I'll do my treatment in 10 minutes and have a piece of string cheese for breakfast as we walk out the door.
<br />
<br />Are CF physical needs something we should deal with mostly alone and keep to ourselves if we look healthy? Sorry if this is a stupid question, I'm an aspie (aspergers syndrome) and I really don't understand what is socially expected or how much people can emotionally handle. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Please help me understand.
<br />
<br />Bonnie
 
N

NoExcuses

New member
all my friends & family understand what i do and why i do it.

part of the advantage of being totally open about CF is that the more people understand about CF, the more likely they are to help or accommodate your needs.

i've gotta go to bed at x time to x hours of sleep so that i don't wind up in the hospital for 2 weeks.

i have to wake up a bit early to do meds so i can have more energy and not get sick during the rest of the day <img src="i/expressions/face-icon-small-smile.gif" border="0">

i am extremely social especially now that i'm in school and everyone knows about my CF and understands why i do what i do. people are very supportive and caring. <img src="i/expressions/face-icon-small-smile.gif" border="0">

but it also takes a bit of patience on my part. i notice a lot of CFers get mad when people don't get it or don't read between the lines. it's difficult to expect everyone to udnerstand CF 100% right off the bat. for example, many of my friends didn't make the connect of a cold = possible hospital for me. they didn't realize i had bacteria in my lungs that grow when i catch a cold. how could i expect them to know that? some CFers get all upset and label these people as insensitive. i simply think of it as how could they know that unless i simply inform them?

good luck!
 
N

NoExcuses

New member
all my friends & family understand what i do and why i do it.

part of the advantage of being totally open about CF is that the more people understand about CF, the more likely they are to help or accommodate your needs.

i've gotta go to bed at x time to x hours of sleep so that i don't wind up in the hospital for 2 weeks.

i have to wake up a bit early to do meds so i can have more energy and not get sick during the rest of the day <img src="i/expressions/face-icon-small-smile.gif" border="0">

i am extremely social especially now that i'm in school and everyone knows about my CF and understands why i do what i do. people are very supportive and caring. <img src="i/expressions/face-icon-small-smile.gif" border="0">

but it also takes a bit of patience on my part. i notice a lot of CFers get mad when people don't get it or don't read between the lines. it's difficult to expect everyone to udnerstand CF 100% right off the bat. for example, many of my friends didn't make the connect of a cold = possible hospital for me. they didn't realize i had bacteria in my lungs that grow when i catch a cold. how could i expect them to know that? some CFers get all upset and label these people as insensitive. i simply think of it as how could they know that unless i simply inform them?

good luck!
 
N

NoExcuses

New member
all my friends & family understand what i do and why i do it.

part of the advantage of being totally open about CF is that the more people understand about CF, the more likely they are to help or accommodate your needs.

i've gotta go to bed at x time to x hours of sleep so that i don't wind up in the hospital for 2 weeks.

i have to wake up a bit early to do meds so i can have more energy and not get sick during the rest of the day <img src="i/expressions/face-icon-small-smile.gif" border="0">

i am extremely social especially now that i'm in school and everyone knows about my CF and understands why i do what i do. people are very supportive and caring. <img src="i/expressions/face-icon-small-smile.gif" border="0">

but it also takes a bit of patience on my part. i notice a lot of CFers get mad when people don't get it or don't read between the lines. it's difficult to expect everyone to udnerstand CF 100% right off the bat. for example, many of my friends didn't make the connect of a cold = possible hospital for me. they didn't realize i had bacteria in my lungs that grow when i catch a cold. how could i expect them to know that? some CFers get all upset and label these people as insensitive. i simply think of it as how could they know that unless i simply inform them?

good luck!
 
N

NoExcuses

New member
all my friends & family understand what i do and why i do it.

part of the advantage of being totally open about CF is that the more people understand about CF, the more likely they are to help or accommodate your needs.

i've gotta go to bed at x time to x hours of sleep so that i don't wind up in the hospital for 2 weeks.

i have to wake up a bit early to do meds so i can have more energy and not get sick during the rest of the day <img src="i/expressions/face-icon-small-smile.gif" border="0">

i am extremely social especially now that i'm in school and everyone knows about my CF and understands why i do what i do. people are very supportive and caring. <img src="i/expressions/face-icon-small-smile.gif" border="0">

but it also takes a bit of patience on my part. i notice a lot of CFers get mad when people don't get it or don't read between the lines. it's difficult to expect everyone to udnerstand CF 100% right off the bat. for example, many of my friends didn't make the connect of a cold = possible hospital for me. they didn't realize i had bacteria in my lungs that grow when i catch a cold. how could i expect them to know that? some CFers get all upset and label these people as insensitive. i simply think of it as how could they know that unless i simply inform them?

good luck!
 
N

NoExcuses

New member
all my friends & family understand what i do and why i do it.
<br />
<br />part of the advantage of being totally open about CF is that the more people understand about CF, the more likely they are to help or accommodate your needs.
<br />
<br />i've gotta go to bed at x time to x hours of sleep so that i don't wind up in the hospital for 2 weeks.
<br />
<br />i have to wake up a bit early to do meds so i can have more energy and not get sick during the rest of the day <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />i am extremely social especially now that i'm in school and everyone knows about my CF and understands why i do what i do. people are very supportive and caring. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />but it also takes a bit of patience on my part. i notice a lot of CFers get mad when people don't get it or don't read between the lines. it's difficult to expect everyone to udnerstand CF 100% right off the bat. for example, many of my friends didn't make the connect of a cold = possible hospital for me. they didn't realize i had bacteria in my lungs that grow when i catch a cold. how could i expect them to know that? some CFers get all upset and label these people as insensitive. i simply think of it as how could they know that unless i simply inform them?
<br />
<br />good luck!
 
E

Emily65Roses

New member
Well as an Aspie, it would be your personal decision. But there are lots of people that go to lengths to hide their CF, and there are people like Amy (NoExcuses) and myself who are very open about it. I say "I need to do X before we can go out, or you can go without me -- I can't skip it." And people generally wait. If you make it clear that there is NO bending on it, chances are... they won't try to make you bend. At least not many times. As long as you stick to it, they'll see you're not flexible on it, and they'll stop trying to change your schedule. I also sent you a PM. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
E

Emily65Roses

New member
Well as an Aspie, it would be your personal decision. But there are lots of people that go to lengths to hide their CF, and there are people like Amy (NoExcuses) and myself who are very open about it. I say "I need to do X before we can go out, or you can go without me -- I can't skip it." And people generally wait. If you make it clear that there is NO bending on it, chances are... they won't try to make you bend. At least not many times. As long as you stick to it, they'll see you're not flexible on it, and they'll stop trying to change your schedule. I also sent you a PM. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
E

Emily65Roses

New member
Well as an Aspie, it would be your personal decision. But there are lots of people that go to lengths to hide their CF, and there are people like Amy (NoExcuses) and myself who are very open about it. I say "I need to do X before we can go out, or you can go without me -- I can't skip it." And people generally wait. If you make it clear that there is NO bending on it, chances are... they won't try to make you bend. At least not many times. As long as you stick to it, they'll see you're not flexible on it, and they'll stop trying to change your schedule. I also sent you a PM. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
E

Emily65Roses

New member
Well as an Aspie, it would be your personal decision. But there are lots of people that go to lengths to hide their CF, and there are people like Amy (NoExcuses) and myself who are very open about it. I say "I need to do X before we can go out, or you can go without me -- I can't skip it." And people generally wait. If you make it clear that there is NO bending on it, chances are... they won't try to make you bend. At least not many times. As long as you stick to it, they'll see you're not flexible on it, and they'll stop trying to change your schedule. I also sent you a PM. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
E

Emily65Roses

New member
Well as an Aspie, it would be your personal decision. But there are lots of people that go to lengths to hide their CF, and there are people like Amy (NoExcuses) and myself who are very open about it. I say "I need to do X before we can go out, or you can go without me -- I can't skip it." And people generally wait. If you make it clear that there is NO bending on it, chances are... they won't try to make you bend. At least not many times. As long as you stick to it, they'll see you're not flexible on it, and they'll stop trying to change your schedule. I also sent you a PM. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

jamie6girl

New member
I get very irritated when people don't understand that I have to get home early or I can't go out because I have treatments to do. One of my friends has major issues at taking "No" for an answer. I've explained the situation, etc, but it has taken her a long time to get used to the fact that I can't always up and go out. I have to plan, as most of the people on this board has to... She is very impulsive, and constantly has to be doing things. So it's very frustrating for me when she gets all hurt if I don't want to go out to dinner. I have to re-explain that I have to do my vest and breathe my meds before I can eat or I'll puke all over the place. It gets old having to constantly explain yourself. Hopefully some people will finally get it and it won't be an issue. However, we have to understant that there will always be people that will never get it.
 
J

jamie6girl

New member
I get very irritated when people don't understand that I have to get home early or I can't go out because I have treatments to do. One of my friends has major issues at taking "No" for an answer. I've explained the situation, etc, but it has taken her a long time to get used to the fact that I can't always up and go out. I have to plan, as most of the people on this board has to... She is very impulsive, and constantly has to be doing things. So it's very frustrating for me when she gets all hurt if I don't want to go out to dinner. I have to re-explain that I have to do my vest and breathe my meds before I can eat or I'll puke all over the place. It gets old having to constantly explain yourself. Hopefully some people will finally get it and it won't be an issue. However, we have to understant that there will always be people that will never get it.
 
J

jamie6girl

New member
I get very irritated when people don't understand that I have to get home early or I can't go out because I have treatments to do. One of my friends has major issues at taking "No" for an answer. I've explained the situation, etc, but it has taken her a long time to get used to the fact that I can't always up and go out. I have to plan, as most of the people on this board has to... She is very impulsive, and constantly has to be doing things. So it's very frustrating for me when she gets all hurt if I don't want to go out to dinner. I have to re-explain that I have to do my vest and breathe my meds before I can eat or I'll puke all over the place. It gets old having to constantly explain yourself. Hopefully some people will finally get it and it won't be an issue. However, we have to understant that there will always be people that will never get it.
 
J

jamie6girl

New member
I get very irritated when people don't understand that I have to get home early or I can't go out because I have treatments to do. One of my friends has major issues at taking "No" for an answer. I've explained the situation, etc, but it has taken her a long time to get used to the fact that I can't always up and go out. I have to plan, as most of the people on this board has to... She is very impulsive, and constantly has to be doing things. So it's very frustrating for me when she gets all hurt if I don't want to go out to dinner. I have to re-explain that I have to do my vest and breathe my meds before I can eat or I'll puke all over the place. It gets old having to constantly explain yourself. Hopefully some people will finally get it and it won't be an issue. However, we have to understant that there will always be people that will never get it.
 
J

jamie6girl

New member
I get very irritated when people don't understand that I have to get home early or I can't go out because I have treatments to do. One of my friends has major issues at taking "No" for an answer. I've explained the situation, etc, but it has taken her a long time to get used to the fact that I can't always up and go out. I have to plan, as most of the people on this board has to... She is very impulsive, and constantly has to be doing things. So it's very frustrating for me when she gets all hurt if I don't want to go out to dinner. I have to re-explain that I have to do my vest and breathe my meds before I can eat or I'll puke all over the place. It gets old having to constantly explain yourself. Hopefully some people will finally get it and it won't be an issue. However, we have to understant that there will always be people that will never get it.
 
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