How do you do it?

sunshine5637 · Jan 11, 2011

I've always been pretty healthy (as healthy as can be with CF) and never really had to spend much time caring for myself. I'm now 31 and am having to learn to fit some "caring for myself" time into my schedule. I don't have children (as of now) but I was just reading that several of you spend several hours per day just taking care of yourself.

I was wondering how you do it? I mean, getting up at 5:30 in the morning to do my treatments nearly kills me (and most of the time, I'm just simply not able to get up then so I miss the treatments-with the exception for my Cayston because it only takes a couple of minutes, can't afford to miss that!!), then I go to work from 8-5. By the end of the workday, I am worn out...and I'm trying, TRYING, to somehow fit exercise into my day and then of course, the night time treatments (which aren't a problem).

Seriously, how do you do it? Is something wrong with me for me to so worn out?

sunshine5637 · Jan 11, 2011

I've always been pretty healthy (as healthy as can be with CF) and never really had to spend much time caring for myself. I'm now 31 and am having to learn to fit some "caring for myself" time into my schedule. I don't have children (as of now) but I was just reading that several of you spend several hours per day just taking care of yourself.

I was wondering how you do it? I mean, getting up at 5:30 in the morning to do my treatments nearly kills me (and most of the time, I'm just simply not able to get up then so I miss the treatments-with the exception for my Cayston because it only takes a couple of minutes, can't afford to miss that!!), then I go to work from 8-5. By the end of the workday, I am worn out...and I'm trying, TRYING, to somehow fit exercise into my day and then of course, the night time treatments (which aren't a problem).

Seriously, how do you do it? Is something wrong with me for me to so worn out?

sunshine5637 · Jan 11, 2011

I've always been pretty healthy (as healthy as can be with CF) and never really had to spend much time caring for myself. I'm now 31 and am having to learn to fit some "caring for myself" time into my schedule. I don't have children (as of now) but I was just reading that several of you spend several hours per day just taking care of yourself.
 
 I was wondering how you do it? I mean, getting up at 5:30 in the morning to do my treatments nearly kills me (and most of the time, I'm just simply not able to get up then so I miss the treatments-with the exception for my Cayston because it only takes a couple of minutes, can't afford to miss that!!), then I go to work from 8-5. By the end of the workday, I am worn out...and I'm trying, TRYING, to somehow fit exercise into my day and then of course, the night time treatments (which aren't a problem).
 
 Seriously, how do you do it? Is something wrong with me for me to so worn out?

erock77 · Jan 11, 2011

I just have a regimen for weekdays. I'm sure some CF'ers tend to exaggerate a little how much time they devote. I've done it in the past. I wake up at 6:20 this morning, doing vest and saline right now as I check email and type here. Plus the saline sinus rinses, CF seems to add about 40 minutes to my morning. I see it as a transition to my day where I have to actually move around. Tobi months I wake up 1/2 hour earlier and Cayston months like 10 minutes earlier. I go to the gym Mon & Thursdays after work, and try to exercise on the weekend. My hours are typically 9am to 4:30pm. I figure there are some people at my work with an hour commute, so same amount of prep time, just mine is spent on CF.

erock77 · Jan 11, 2011

I just have a regimen for weekdays. I'm sure some CF'ers tend to exaggerate a little how much time they devote. I've done it in the past. I wake up at 6:20 this morning, doing vest and saline right now as I check email and type here. Plus the saline sinus rinses, CF seems to add about 40 minutes to my morning. I see it as a transition to my day where I have to actually move around. Tobi months I wake up 1/2 hour earlier and Cayston months like 10 minutes earlier. I go to the gym Mon & Thursdays after work, and try to exercise on the weekend. My hours are typically 9am to 4:30pm. I figure there are some people at my work with an hour commute, so same amount of prep time, just mine is spent on CF.

erock77 · Jan 11, 2011

I just have a regimen for weekdays. I'm sure some CF'ers tend to exaggerate a little how much time they devote. I've done it in the past. I wake up at 6:20 this morning, doing vest and saline right now as I check email and type here. Plus the saline sinus rinses, CF seems to add about 40 minutes to my morning. I see it as a transition to my day where I have to actually move around. Tobi months I wake up 1/2 hour earlier and Cayston months like 10 minutes earlier. I go to the gym Mon & Thursdays after work, and try to exercise on the weekend. My hours are typically 9am to 4:30pm. I figure there are some people at my work with an hour commute, so same amount of prep time, just mine is spent on CF.

SRains24 · Jan 11, 2011

I have a 45min - 1hr commute to work. I get up at 5 do my brovana, pulmozyme, and vest(30min). Put on some sweats and go for a run (30min). Get home do my Cayston, take a bath(15-30min). Take my pills and make breakfast. Mondays, Wednesdays, and Fridays I hit the gym for 45 minutes by now it's 9am(if everything goes as planned). Come home and play with my daughters for a couple hours before my next Cayston and then off to work From 3p-8p. On Tuesday, Thursday, and Friday I have class so my second round of cayston is done at school, then off to work from school. Get home around 9, and do the last round of Brovana and Vest, then out for another run(30min) and my last cayston treament. I'm typically in bed by 11-11:30.

I work everyday. I cut out 99% of my TV time and only watch the shows that appeal to me while I'm doing treatments (thank you TiVo). Obviously this schedule changes every now and then, but for the most part that is my day.

SRains24 · Jan 11, 2011

I have a 45min - 1hr commute to work. I get up at 5 do my brovana, pulmozyme, and vest(30min). Put on some sweats and go for a run (30min). Get home do my Cayston, take a bath(15-30min). Take my pills and make breakfast. Mondays, Wednesdays, and Fridays I hit the gym for 45 minutes by now it's 9am(if everything goes as planned). Come home and play with my daughters for a couple hours before my next Cayston and then off to work From 3p-8p. On Tuesday, Thursday, and Friday I have class so my second round of cayston is done at school, then off to work from school. Get home around 9, and do the last round of Brovana and Vest, then out for another run(30min) and my last cayston treament. I'm typically in bed by 11-11:30.

I work everyday. I cut out 99% of my TV time and only watch the shows that appeal to me while I'm doing treatments (thank you TiVo). Obviously this schedule changes every now and then, but for the most part that is my day.

SRains24 · Jan 11, 2011

I have a 45min - 1hr commute to work. I get up at 5 do my brovana, pulmozyme, and vest(30min). Put on some sweats and go for a run (30min). Get home do my Cayston, take a bath(15-30min). Take my pills and make breakfast. Mondays, Wednesdays, and Fridays I hit the gym for 45 minutes by now it's 9am(if everything goes as planned). Come home and play with my daughters for a couple hours before my next Cayston and then off to work From 3p-8p. On Tuesday, Thursday, and Friday I have class so my second round of cayston is done at school, then off to work from school. Get home around 9, and do the last round of Brovana and Vest, then out for another run(30min) and my last cayston treament. I'm typically in bed by 11-11:30.
 
 I work everyday. I cut out 99% of my TV time and only watch the shows that appeal to me while I'm doing treatments (thank you TiVo). Obviously this schedule changes every now and then, but for the most part that is my day.

missT · Jan 11, 2011

hi sunshine, I am worn out most of the time too. I have a very unusual job in that my hours fluctuate all the time. sometimes I start at 8am and other times 2pm. sometimes it is a long day and other times a few hours. I am not on any schedule with my nebs. I do them when I can fit them in. I have choosen this route and I cannot imagine waking up at 5:30 to do my nebs. I take 2 hour naps every other day and most nights I am up to the wee hours of the morning. I do understand at 40 my body requires more rest so I have a limit of 2 a.m. I work probably 50-70 hours a week. I do not have kids so I really am able to relax when I want.

missT · Jan 11, 2011

hi sunshine, I am worn out most of the time too. I have a very unusual job in that my hours fluctuate all the time. sometimes I start at 8am and other times 2pm. sometimes it is a long day and other times a few hours. I am not on any schedule with my nebs. I do them when I can fit them in. I have choosen this route and I cannot imagine waking up at 5:30 to do my nebs. I take 2 hour naps every other day and most nights I am up to the wee hours of the morning. I do understand at 40 my body requires more rest so I have a limit of 2 a.m. I work probably 50-70 hours a week. I do not have kids so I really am able to relax when I want.

missT · Jan 11, 2011

hi sunshine, I am worn out most of the time too. I have a very unusual job in that my hours fluctuate all the time. sometimes I start at 8am and other times 2pm. sometimes it is a long day and other times a few hours. I am not on any schedule with my nebs. I do them when I can fit them in. I have choosen this route and I cannot imagine waking up at 5:30 to do my nebs. I take 2 hour naps every other day and most nights I am up to the wee hours of the morning. I do understand at 40 my body requires more rest so I have a limit of 2 a.m. I work probably 50-70 hours a week. I do not have kids so I really am able to relax when I want.

tesorotiffa · Jan 11, 2011

Like you, I was healthy for a long time! Over the past several years I've been forced to learn how to actually incorporate meds into my day!

I get up between 5-6 and do a 30 minute vest (duoneb and hypertonic saline during the vest session). I do a sinus rinse, eat breakfast, take pills and head off to work. I work 7-4 or 8-5 (just depends on what time I get to work, it's fairly flexible). Sometime before bed, I do a 30-45 minute vest with duoneb, hypertonic saline, mucomyst or pulmozyme and then whatever antibiotic I'm on at the time. I do a nose rinse and pills.

I can honestly say I don't usually do a 30 minute treatment in the morning. If I'm feeling good, I do a 10 minute one at the most. Tuesdays and Thursdays I get up at 4:30 to do meds before I head out to kickboxing class at 6:15am! Then my schedule resumes as normal.

When I'm on Cayston, I make time to do the 3 treatments a day. So, I realize I probably do a minimal amount of maintenace in comparison to a lot of other people... but regardless of how long it takes... it's a learning process!! Plus you just have to learn how to prioritize!

If I have to choose between getting up 30 minutes earlier to do a Vest treatment and coughing all day... yeah, it's much more pleasant to wake up a little earlier!

tesorotiffa · Jan 11, 2011

Like you, I was healthy for a long time! Over the past several years I've been forced to learn how to actually incorporate meds into my day!

I get up between 5-6 and do a 30 minute vest (duoneb and hypertonic saline during the vest session). I do a sinus rinse, eat breakfast, take pills and head off to work. I work 7-4 or 8-5 (just depends on what time I get to work, it's fairly flexible). Sometime before bed, I do a 30-45 minute vest with duoneb, hypertonic saline, mucomyst or pulmozyme and then whatever antibiotic I'm on at the time. I do a nose rinse and pills.

I can honestly say I don't usually do a 30 minute treatment in the morning. If I'm feeling good, I do a 10 minute one at the most. Tuesdays and Thursdays I get up at 4:30 to do meds before I head out to kickboxing class at 6:15am! Then my schedule resumes as normal.

When I'm on Cayston, I make time to do the 3 treatments a day. So, I realize I probably do a minimal amount of maintenace in comparison to a lot of other people... but regardless of how long it takes... it's a learning process!! Plus you just have to learn how to prioritize!

If I have to choose between getting up 30 minutes earlier to do a Vest treatment and coughing all day... yeah, it's much more pleasant to wake up a little earlier!

tesorotiffa · Jan 11, 2011

Like you, I was healthy for a long time! Over the past several years I've been forced to learn how to actually incorporate meds into my day!
 
 I get up between 5-6 and do a 30 minute vest (duoneb and hypertonic saline during the vest session). I do a sinus rinse, eat breakfast, take pills and head off to work. I work 7-4 or 8-5 (just depends on what time I get to work, it's fairly flexible). Sometime before bed, I do a 30-45 minute vest with duoneb, hypertonic saline, mucomyst or pulmozyme and then whatever antibiotic I'm on at the time. I do a nose rinse and pills.
 
 I can honestly say I don't usually do a 30 minute treatment in the morning. If I'm feeling good, I do a 10 minute one at the most. Tuesdays and Thursdays I get up at 4:30 to do meds before I head out to kickboxing class at 6:15am! Then my schedule resumes as normal.
 
 When I'm on Cayston, I make time to do the 3 treatments a day. So, I realize I probably do a minimal amount of maintenace in comparison to a lot of other people... but regardless of how long it takes... it's a learning process!! Plus you just have to learn how to prioritize!
 
 If I have to choose between getting up 30 minutes earlier to do a Vest treatment and coughing all day... yeah, it's much more pleasant to wake up a little earlier!

Charlene · Jan 11, 2011

Hi,
I have been healthy most of my life also, so much until I wasn't even diagnosed until I was 45. Unfortunately, I had a couple really rough hospital trips and decided I would learn to make the time to take care of myself. I only exercise monday,wednesday and friday. But, I make sure I do my vest at least once daily, try for 2. And make sure I do all my nebs. Take care of yourself so you can have lots of good tomorrow.

Charlene · Jan 11, 2011

Hi,
I have been healthy most of my life also, so much until I wasn't even diagnosed until I was 45. Unfortunately, I had a couple really rough hospital trips and decided I would learn to make the time to take care of myself. I only exercise monday,wednesday and friday. But, I make sure I do my vest at least once daily, try for 2. And make sure I do all my nebs. Take care of yourself so you can have lots of good tomorrow.

Charlene · Jan 11, 2011

Hi,
 I have been healthy most of my life also, so much until I wasn't even diagnosed until I was 45. Unfortunately, I had a couple really rough hospital trips and decided I would learn to make the time to take care of myself. I only exercise monday,wednesday and friday. But, I make sure I do my vest at least once daily, try for 2. And make sure I do all my nebs. Take care of yourself so you can have lots of good tomorrow.

Solo · Jan 12, 2011

I probably devote less than an hour a day on treatments. Now if we're talking about taking care of ourselves, then you have to take into account the time I take with every meal counting the amount of carbs in it, and counting the enzymes out.

I am really worn out, not so much from the CF, although that does play into it, but from my osteopenia. I often feel like I'm decades older than I actually am, as I struggle to do what normal people take for granted. Working 8 hours a day really tires me out, and by the time I get home, do my treatments and eat, I look forward to relaxing with a beer or two. I'm actually considering going on disability now, as I'm not 20 anymore and manual labor is really kicking my ass!

Solo · Jan 12, 2011

I probably devote less than an hour a day on treatments. Now if we're talking about taking care of ourselves, then you have to take into account the time I take with every meal counting the amount of carbs in it, and counting the enzymes out.

I am really worn out, not so much from the CF, although that does play into it, but from my osteopenia. I often feel like I'm decades older than I actually am, as I struggle to do what normal people take for granted. Working 8 hours a day really tires me out, and by the time I get home, do my treatments and eat, I look forward to relaxing with a beer or two. I'm actually considering going on disability now, as I'm not 20 anymore and manual labor is really kicking my ass!

How do you do it?

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