How do you do it?

S

Solo

New member
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.
<br />
<br />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!
 
W

welshwitch

Guest
The way I think about it is similar to erock--everyone has something time consuming, whether it is a work commute, kids, a class, etc. Everyone has time management issues, CF or not.

I've been able to narrow down what it takes to manage my CF. Getting enough sleep, eating right and watching my alcohol intake are the keys. Running 3+ times per week is a non negotiable for me. If I don't do it, I start feeling crappy and worn down. I go after work for an hour. (I've already found that going in the am before work just does not work for me.) The results are so worth it! Part of my "workout" involves a pulmozyme treatment post run. I also make it fun, like I record my progress in mapmyrun.com. I don't have the vest (yet) so as of yet that's not part of my regimen.

Try joining a gym and going after work just a couple days a week. Go straight to the gym from work, otherwise, once you get to your house and on the couch you won't be able to get back up again! Eventually you will find that although taking care of yourself takes time, it is so worth it and makes the rest of your life that much more enjoyable.
 
W

welshwitch

Guest
The way I think about it is similar to erock--everyone has something time consuming, whether it is a work commute, kids, a class, etc. Everyone has time management issues, CF or not.

I've been able to narrow down what it takes to manage my CF. Getting enough sleep, eating right and watching my alcohol intake are the keys. Running 3+ times per week is a non negotiable for me. If I don't do it, I start feeling crappy and worn down. I go after work for an hour. (I've already found that going in the am before work just does not work for me.) The results are so worth it! Part of my "workout" involves a pulmozyme treatment post run. I also make it fun, like I record my progress in mapmyrun.com. I don't have the vest (yet) so as of yet that's not part of my regimen.

Try joining a gym and going after work just a couple days a week. Go straight to the gym from work, otherwise, once you get to your house and on the couch you won't be able to get back up again! Eventually you will find that although taking care of yourself takes time, it is so worth it and makes the rest of your life that much more enjoyable.
 
W

welshwitch

Guest
The way I think about it is similar to erock--everyone has something time consuming, whether it is a work commute, kids, a class, etc. Everyone has time management issues, CF or not.
<br />
<br />I've been able to narrow down what it takes to manage my CF. Getting enough sleep, eating right and watching my alcohol intake are the keys. Running 3+ times per week is a non negotiable for me. If I don't do it, I start feeling crappy and worn down. I go after work for an hour. (I've already found that going in the am before work just does not work for me.) The results are so worth it! Part of my "workout" involves a pulmozyme treatment post run. I also make it fun, like I record my progress in mapmyrun.com. I don't have the vest (yet) so as of yet that's not part of my regimen.
<br />
<br />Try joining a gym and going after work just a couple days a week. Go straight to the gym from work, otherwise, once you get to your house and on the couch you won't be able to get back up again! Eventually you will find that although taking care of yourself takes time, it is so worth it and makes the rest of your life that much more enjoyable.
 
B

bagged2drag

Active member
I've pretty much given up on my treatments now unless I feel really shitty. I take my combivent and advair pretty regularly, but they only take a few sec's and make a tangible difference (that I can immediately feel at least). Working and home seem to be sucking the life out of me anyway, so why bother. I work harder and harder, yet continue to fall behind. I just don't see it worth it to waste my time any more, I don't care.
 
B

bagged2drag

Active member
I've pretty much given up on my treatments now unless I feel really shitty. I take my combivent and advair pretty regularly, but they only take a few sec's and make a tangible difference (that I can immediately feel at least). Working and home seem to be sucking the life out of me anyway, so why bother. I work harder and harder, yet continue to fall behind. I just don't see it worth it to waste my time any more, I don't care.
 
B

bagged2drag

Active member
I've pretty much given up on my treatments now unless I feel really shitty. I take my combivent and advair pretty regularly, but they only take a few sec's and make a tangible difference (that I can immediately feel at least). Working and home seem to be sucking the life out of me anyway, so why bother. I work harder and harder, yet continue to fall behind. I just don't see it worth it to waste my time any more, I don't care.
 
C

Crayonlove92

New member
Jeeeeeze. I'm like blown away by what i'm reading and at the same time thinking "You go guys!" lol Reason being i'm only 18 and thinking I could never do what you all are doing everyday. I mean, how often does everyone that's posted so far get sick? For me i'm on IV antibiotics every 2-3 months..
 
C

Crayonlove92

New member
Jeeeeeze. I'm like blown away by what i'm reading and at the same time thinking "You go guys!" lol Reason being i'm only 18 and thinking I could never do what you all are doing everyday. I mean, how often does everyone that's posted so far get sick? For me i'm on IV antibiotics every 2-3 months..
 
C

Crayonlove92

New member
Jeeeeeze. I'm like blown away by what i'm reading and at the same time thinking "You go guys!" lol Reason being i'm only 18 and thinking I could never do what you all are doing everyday. I mean, how often does everyone that's posted so far get sick? For me i'm on IV antibiotics every 2-3 months..
 
M

mamaScarlett

Active member
I never miss my a.m chest pt, period. I skip my p.m chest p.t on average 1x a week if by the end of the day I am so exhausted-there are times I feel that my sleep is more important.
I wasn't always like this!! It wasn't until I was around 21,22 that I got my act together, didn't want to be living on IVs year round, wanted a future and family so I got to work.
I work my butt off and there are lots of days I hate it, but the rewards are huge, so I just do it.
(I average IVs once a year to year and a half, since someone asked that)
If I were you Sunshine, I'd go to bed earlier so you can get up and do that a.m chest pt. You'd be better off skipping a shower and throwing your hair in a pony tail and eating breakfast in the car-and using that morning time for chest pt. I KNOW its awful especially that early! But your lungs will thank you in the long term, and the short term. You'll probably have so much more energy and feel like you can breathe better all day.
(btw-If you aren't doing albuterol and cleaning your lungs out before you are inhaling your Cayston, fyi, its really not doing much for your lungs. I had to learn that too when i started it.)
I just joined a gym also. My plan is to put my 4 yr old in a class so I get a 30 min workout in, 2x a week. Then when this baby is born, we can do a mommy and me workout together during 4 yr olds class time. Just like when my 1st was born, I won't skip chest pt. Little one just sits in a bouncy seat in the same room and learns from an early age that this is moms time for chest pt and it never gets interrupted.
ITS NOT EASY! But is anything worthwhile in life easy?
 
M

mamaScarlett

Active member
I never miss my a.m chest pt, period. I skip my p.m chest p.t on average 1x a week if by the end of the day I am so exhausted-there are times I feel that my sleep is more important.
I wasn't always like this!! It wasn't until I was around 21,22 that I got my act together, didn't want to be living on IVs year round, wanted a future and family so I got to work.
I work my butt off and there are lots of days I hate it, but the rewards are huge, so I just do it.
(I average IVs once a year to year and a half, since someone asked that)
If I were you Sunshine, I'd go to bed earlier so you can get up and do that a.m chest pt. You'd be better off skipping a shower and throwing your hair in a pony tail and eating breakfast in the car-and using that morning time for chest pt. I KNOW its awful especially that early! But your lungs will thank you in the long term, and the short term. You'll probably have so much more energy and feel like you can breathe better all day.
(btw-If you aren't doing albuterol and cleaning your lungs out before you are inhaling your Cayston, fyi, its really not doing much for your lungs. I had to learn that too when i started it.)
I just joined a gym also. My plan is to put my 4 yr old in a class so I get a 30 min workout in, 2x a week. Then when this baby is born, we can do a mommy and me workout together during 4 yr olds class time. Just like when my 1st was born, I won't skip chest pt. Little one just sits in a bouncy seat in the same room and learns from an early age that this is moms time for chest pt and it never gets interrupted.
ITS NOT EASY! But is anything worthwhile in life easy?
 
M

mamaScarlett

Active member
I never miss my a.m chest pt, period. I skip my p.m chest p.t on average 1x a week if by the end of the day I am so exhausted-there are times I feel that my sleep is more important.
<br />I wasn't always like this!! It wasn't until I was around 21,22 that I got my act together, didn't want to be living on IVs year round, wanted a future and family so I got to work.
<br />I work my butt off and there are lots of days I hate it, but the rewards are huge, so I just do it.
<br />(I average IVs once a year to year and a half, since someone asked that)
<br />If I were you Sunshine, I'd go to bed earlier so you can get up and do that a.m chest pt. You'd be better off skipping a shower and throwing your hair in a pony tail and eating breakfast in the car-and using that morning time for chest pt. I KNOW its awful especially that early! But your lungs will thank you in the long term, and the short term. You'll probably have so much more energy and feel like you can breathe better all day.
<br />(btw-If you aren't doing albuterol and cleaning your lungs out before you are inhaling your Cayston, fyi, its really not doing much for your lungs. I had to learn that too when i started it.)
<br />I just joined a gym also. My plan is to put my 4 yr old in a class so I get a 30 min workout in, 2x a week. Then when this baby is born, we can do a mommy and me workout together during 4 yr olds class time. Just like when my 1st was born, I won't skip chest pt. Little one just sits in a bouncy seat in the same room and learns from an early age that this is moms time for chest pt and it never gets interrupted.
<br />ITS NOT EASY! But is anything worthwhile in life easy?
 
K

Kristen

New member
I don't work anymore (I'm now a stay at home mom), but, when I did, I would do my at least some of treatments in the car way to work (I had a 30-45 minute commute). On the months I had to do colistin, my day was something like this:

-Get up around 6:30, do my albuterol and at least some of my hypertonic saline while checking email, etc.

-Finish getting ready and leave the house at 8:20. Finish my HS and do my colistin in the car.

-Work from 9-5:30 (with a 30 minute lunch break).

-Hit the gym from 5:45 to 6:45.

-Do at least some of my treatments on the drive home

-Get home around 7:15.

-Eat dinner, shower, finish my treatments, sterilize nebs, pack my bag for the next day, etc. My husband usually cooked dinner, or I'd have something easy like a frozen meal and a salad.

-Be in bed around 10:00.

-I know this is bad, but, I will admit that the only time I did chest PT was if I felt "gunky" and I'd do it during my two 15 minute breaks using my acapella in my car (parked in the parking garage at work).

Weekends were spent cleaning and running around getting all my other "stuff" done.

I will admit that it was a stressful lifestyle and I am happy not to be doing it anymore!
 
K

Kristen

New member
I don't work anymore (I'm now a stay at home mom), but, when I did, I would do my at least some of treatments in the car way to work (I had a 30-45 minute commute). On the months I had to do colistin, my day was something like this:

-Get up around 6:30, do my albuterol and at least some of my hypertonic saline while checking email, etc.

-Finish getting ready and leave the house at 8:20. Finish my HS and do my colistin in the car.

-Work from 9-5:30 (with a 30 minute lunch break).

-Hit the gym from 5:45 to 6:45.

-Do at least some of my treatments on the drive home

-Get home around 7:15.

-Eat dinner, shower, finish my treatments, sterilize nebs, pack my bag for the next day, etc. My husband usually cooked dinner, or I'd have something easy like a frozen meal and a salad.

-Be in bed around 10:00.

-I know this is bad, but, I will admit that the only time I did chest PT was if I felt "gunky" and I'd do it during my two 15 minute breaks using my acapella in my car (parked in the parking garage at work).

Weekends were spent cleaning and running around getting all my other "stuff" done.

I will admit that it was a stressful lifestyle and I am happy not to be doing it anymore!
 
K

Kristen

New member
I don't work anymore (I'm now a stay at home mom), but, when I did, I would do my at least some of treatments in the car way to work (I had a 30-45 minute commute). On the months I had to do colistin, my day was something like this:
<br />
<br />-Get up around 6:30, do my albuterol and at least some of my hypertonic saline while checking email, etc.
<br />
<br />-Finish getting ready and leave the house at 8:20. Finish my HS and do my colistin in the car.
<br />
<br />-Work from 9-5:30 (with a 30 minute lunch break).
<br />
<br />-Hit the gym from 5:45 to 6:45.
<br />
<br />-Do at least some of my treatments on the drive home
<br />
<br />-Get home around 7:15.
<br />
<br />-Eat dinner, shower, finish my treatments, sterilize nebs, pack my bag for the next day, etc. My husband usually cooked dinner, or I'd have something easy like a frozen meal and a salad.
<br />
<br />-Be in bed around 10:00.
<br />
<br />-I know this is bad, but, I will admit that the only time I did chest PT was if I felt "gunky" and I'd do it during my two 15 minute breaks using my acapella in my car (parked in the parking garage at work).
<br />
<br />Weekends were spent cleaning and running around getting all my other "stuff" done.
<br />
<br />I will admit that it was a stressful lifestyle and I am happy not to be doing it anymore!
 
I

Iamqueenofeverything

New member
Post something similar. but i have cf maintance that is equal to a full time job. i work a part time job so that helps. i am also trying to get on disability.
do treatments with chores like laundry or going through files and stuff like that.
 
I

Iamqueenofeverything

New member
Post something similar. but i have cf maintance that is equal to a full time job. i work a part time job so that helps. i am also trying to get on disability.
do treatments with chores like laundry or going through files and stuff like that.
 
I

Iamqueenofeverything

New member
Post something similar. but i have cf maintance that is equal to a full time job. i work a part time job so that helps. i am also trying to get on disability.
<br />do treatments with chores like laundry or going through files and stuff like that.
 
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