How does CF restrict you?

[Lance2020x]

A good friend of mine is giving a presentation to her college class about CF, mainly how it restricts us from every day / normal things.
She called me up to ask me my thoughts, I gave her as much info as I could thinking of at the time, but I found this quite a difficult question to answer!
I guess I always looked at things differently, for instance a PICC like to me isn't a restriction, though inconvenience, it's a liberation from IV bags. I've never really thought of my medications and tharapies as restrictions, thought annoying and time consuming, more as just something I MUST deal with, not can or can't.
Most restrictions for me are the TIME it takes to do everything, the fact that I am trapped by the need for medication, by the psychological factors and just the extra care I have to take to keep my body healthy.

So I know there are a lot of you who are on SSI and such, PLEASE give me your thoughts on how CF restricts you. Mainly physically and in every day life etc.
I'm going to pass along what is said to her for her school presentation once I get some good responses.

 

[Lance2020x]

A good friend of mine is giving a presentation to her college class about CF, mainly how it restricts us from every day / normal things.
She called me up to ask me my thoughts, I gave her as much info as I could thinking of at the time, but I found this quite a difficult question to answer!
I guess I always looked at things differently, for instance a PICC like to me isn't a restriction, though inconvenience, it's a liberation from IV bags. I've never really thought of my medications and tharapies as restrictions, thought annoying and time consuming, more as just something I MUST deal with, not can or can't.
Most restrictions for me are the TIME it takes to do everything, the fact that I am trapped by the need for medication, by the psychological factors and just the extra care I have to take to keep my body healthy.

So I know there are a lot of you who are on SSI and such, PLEASE give me your thoughts on how CF restricts you. Mainly physically and in every day life etc.
I'm going to pass along what is said to her for her school presentation once I get some good responses.

 

[Lance2020x]

A good friend of mine is giving a presentation to her college class about CF, mainly how it restricts us from every day / normal things.
She called me up to ask me my thoughts, I gave her as much info as I could thinking of at the time, but I found this quite a difficult question to answer!
I guess I always looked at things differently, for instance a PICC like to me isn't a restriction, though inconvenience, it's a liberation from IV bags. I've never really thought of my medications and tharapies as restrictions, thought annoying and time consuming, more as just something I MUST deal with, not can or can't.
Most restrictions for me are the TIME it takes to do everything, the fact that I am trapped by the need for medication, by the psychological factors and just the extra care I have to take to keep my body healthy.

So I know there are a lot of you who are on SSI and such, PLEASE give me your thoughts on how CF restricts you. Mainly physically and in every day life etc.
I'm going to pass along what is said to her for her school presentation once I get some good responses.

 

[lightNlife]

.

 

[lightNlife]

.

 

[lightNlife]

.

 

[JazzysMom]

Time is the biggest factor, but not just time for treatments. I must pace myself thruought the day. So basic things like laundry, vacuuming, making the beds requires etc time because I cant rush thru the house doing one right after the other. Another thing is that any spontanteous activities are gone. Most things have to be planned. I cant just wake up in the morning and say ROAD TRIP because I need my treatments, I need to make sure I am rested enough & the weather is inducive to my health. $$ is another thing. Although my husband/I dont live paycheck to paycheck with all the meds (both his & mine) we must keep in mind of when things need to be refilled & work around those times. Even with insurance the copays add up. The type of activities also which I just realized as I am responding. We dont go to the fairs like we use to because I cant ride the big ride and cant walk as long as I use to. I might feel ok at the time, but I would pay for it that night or for days after just because I wore myself out. I guess that is it for now....

 

[JazzysMom]

Time is the biggest factor, but not just time for treatments. I must pace myself thruought the day. So basic things like laundry, vacuuming, making the beds requires etc time because I cant rush thru the house doing one right after the other. Another thing is that any spontanteous activities are gone. Most things have to be planned. I cant just wake up in the morning and say ROAD TRIP because I need my treatments, I need to make sure I am rested enough & the weather is inducive to my health. $$ is another thing. Although my husband/I dont live paycheck to paycheck with all the meds (both his & mine) we must keep in mind of when things need to be refilled & work around those times. Even with insurance the copays add up. The type of activities also which I just realized as I am responding. We dont go to the fairs like we use to because I cant ride the big ride and cant walk as long as I use to. I might feel ok at the time, but I would pay for it that night or for days after just because I wore myself out. I guess that is it for now....

 

[JazzysMom]

Time is the biggest factor, but not just time for treatments. I must pace myself thruought the day. So basic things like laundry, vacuuming, making the beds requires etc time because I cant rush thru the house doing one right after the other. Another thing is that any spontanteous activities are gone. Most things have to be planned. I cant just wake up in the morning and say ROAD TRIP because I need my treatments, I need to make sure I am rested enough & the weather is inducive to my health. $$ is another thing. Although my husband/I dont live paycheck to paycheck with all the meds (both his & mine) we must keep in mind of when things need to be refilled & work around those times. Even with insurance the copays add up. The type of activities also which I just realized as I am responding. We dont go to the fairs like we use to because I cant ride the big ride and cant walk as long as I use to. I might feel ok at the time, but I would pay for it that night or for days after just because I wore myself out. I guess that is it for now....

 

[AnD]

My biggest one is time, too. Time to do my meds, sterilize the nebs, do my vest...If I don't get home until 10pm or later (like from dinner with my inlaws), I still have to do my meds and treatments...zzzzzz. Getting up in the morning and going to do something <i>in the morning</i> doesn't usually happen until at least midmorning. I remind myself, however, that the 2 hours or so I spend doing my meds and vest are nothing compared to the time I would lose from my life if I didn't do all my therapies like I'm supposed to... <img src="i/expressions/face-icon-small-wink.gif" border="0">

Shopping day (groceries, etc.) I try not to plan to have anything else to do (besides my morning excercise) because it wears me out. Not having much energy a lot of the time (especially in allergy season) is aggravating...

IV time has taught me to relax and let people help me out when I am sick, and I am getting better at that (*says while gritting teeth*LOL).

Hope that helps a little- don't know that I added anything new... <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[AnD]

My biggest one is time, too. Time to do my meds, sterilize the nebs, do my vest...If I don't get home until 10pm or later (like from dinner with my inlaws), I still have to do my meds and treatments...zzzzzz. Getting up in the morning and going to do something <i>in the morning</i> doesn't usually happen until at least midmorning. I remind myself, however, that the 2 hours or so I spend doing my meds and vest are nothing compared to the time I would lose from my life if I didn't do all my therapies like I'm supposed to... <img src="i/expressions/face-icon-small-wink.gif" border="0">

Shopping day (groceries, etc.) I try not to plan to have anything else to do (besides my morning excercise) because it wears me out. Not having much energy a lot of the time (especially in allergy season) is aggravating...

IV time has taught me to relax and let people help me out when I am sick, and I am getting better at that (*says while gritting teeth*LOL).

Hope that helps a little- don't know that I added anything new... <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[AnD]

My biggest one is time, too. Time to do my meds, sterilize the nebs, do my vest...If I don't get home until 10pm or later (like from dinner with my inlaws), I still have to do my meds and treatments...zzzzzz. Getting up in the morning and going to do something <i>in the morning</i> doesn't usually happen until at least midmorning. I remind myself, however, that the 2 hours or so I spend doing my meds and vest are nothing compared to the time I would lose from my life if I didn't do all my therapies like I'm supposed to... <img src="i/expressions/face-icon-small-wink.gif" border="0">

Shopping day (groceries, etc.) I try not to plan to have anything else to do (besides my morning excercise) because it wears me out. Not having much energy a lot of the time (especially in allergy season) is aggravating...

IV time has taught me to relax and let people help me out when I am sick, and I am getting better at that (*says while gritting teeth*LOL).

Hope that helps a little- don't know that I added anything new... <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[NoExcuses]

I'm going to put a different spin on this -

I feel fortunate to live in a country where I have access to all the latest medications & treatments. Those with CF in the Middle East and Eastern Europe don't often have such access --

Therefore <b>NOTHING </b> restricts me. My medications liberate me. <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]

I'm going to put a different spin on this -

I feel fortunate to live in a country where I have access to all the latest medications & treatments. Those with CF in the Middle East and Eastern Europe don't often have such access --

Therefore <b>NOTHING </b> restricts me. My medications liberate me. <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]

I'm going to put a different spin on this -

I feel fortunate to live in a country where I have access to all the latest medications & treatments. Those with CF in the Middle East and Eastern Europe don't often have such access --

Therefore <b>NOTHING </b> restricts me. My medications liberate me. <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">

 

[Jade]

Beside the normal annoying hold ups CF causes... my hands, right hand to be specific. I do a lot of drawing and I injured my wrist about 10 years ago. Since then putting pressure on that hand for too long makes it very shaky. Whenever I need to <i>up</i> the albuterol dosage due to breathing issues that just makes it worse and I can't even hold a pencil steady by then. The CF meds agitate the injury. It's minor, but annoying at times.

 

[Jade]

Beside the normal annoying hold ups CF causes... my hands, right hand to be specific. I do a lot of drawing and I injured my wrist about 10 years ago. Since then putting pressure on that hand for too long makes it very shaky. Whenever I need to <i>up</i> the albuterol dosage due to breathing issues that just makes it worse and I can't even hold a pencil steady by then. The CF meds agitate the injury. It's minor, but annoying at times.

 

[Jade]

Beside the normal annoying hold ups CF causes... my hands, right hand to be specific. I do a lot of drawing and I injured my wrist about 10 years ago. Since then putting pressure on that hand for too long makes it very shaky. Whenever I need to <i>up</i> the albuterol dosage due to breathing issues that just makes it worse and I can't even hold a pencil steady by then. The CF meds agitate the injury. It's minor, but annoying at times.

 

[Ratatosk]

Treatments -- don't really restrict us, but we do need to plan around events. Especially if DS is on Tobi, we need to get his treatments started earlier or on time if we have an evening event -- otherwise we show up late.

One thing that DOES restrict us is if we find out that the event we're invited to isn't smoke free. None of our close friends or family members smoke, but some of their friends do. Got invited to a wedding last summer -- reception/dance was held at a service club that had smoking, so we had to bow out. Retirement party one summer, I was constantly trying to keep DS away from the table area where everyone was sitting around eating and smoking. Skipped a birthday party there this past spring because we knew that someone's elderly MIL smoked like a chimney and usually held court at the kitchen table. I haven't been too popular with MY MIL lately because I'll tell her ahead of time we're not going because of smoking and she'll snap at me and either deny someone will be smoking or in the case of the wedding "it won't be bad". Sigh...

 

[Ratatosk]

Treatments -- don't really restrict us, but we do need to plan around events. Especially if DS is on Tobi, we need to get his treatments started earlier or on time if we have an evening event -- otherwise we show up late.

One thing that DOES restrict us is if we find out that the event we're invited to isn't smoke free. None of our close friends or family members smoke, but some of their friends do. Got invited to a wedding last summer -- reception/dance was held at a service club that had smoking, so we had to bow out. Retirement party one summer, I was constantly trying to keep DS away from the table area where everyone was sitting around eating and smoking. Skipped a birthday party there this past spring because we knew that someone's elderly MIL smoked like a chimney and usually held court at the kitchen table. I haven't been too popular with MY MIL lately because I'll tell her ahead of time we're not going because of smoking and she'll snap at me and either deny someone will be smoking or in the case of the wedding "it won't be bad". Sigh...