Working and CF

[lightNlife]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ToddH</b></i>


I work full-time 40 hour weeks at a desk job but have been finding it difficult to work and maintain my health. When I'm healthy right after antibiotics I'm fine for exercising and eating and all those things I need to do. However, as I get sick my ability to exercise is way down as I find when I get home from work I'm just exhausted. I find I usually go to work, come home, sleep, wake up for a while, eat and then sleep and get up for work.

I guess what I was wondering was what type of a work schedule do people here manage to balance with their health. </end quote></div>

I am very fortunate to work for a large company that is great about accommodating me when I'm not feeling well. I work full-time as an environmental scientist with a consulting firm. Consulting is great because it is so flexible.

This year has been one of my worst in terms of health--I've had to miss a lot of work over the last 6 months as I've been in and out of the hospital. I was working 40 hours, but I found that by cutting back to 36 (which is still considered full time according to my HR dept) has given me just enough "wiggle room" in my schedule to help me stay on top of things.

I am exceptionally compliant, but even under the best of circumstances I have to know my limitations and not take on more than I can handle. I'm only 26, but I already feel the drain of a full schedule. I'm hoping that my husband and I will be in a position that lets me work very part-time in a few years.

<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com">Breathing Deeply: My Life with CF</a>

 

[NoExcuses]

I do outside sales. I work about 40 hours a week and I am extremely disciplined about my treatments. My lung disease is considered extremely mild but that is only because I adhere to my treatment regimine religiously (I've skipped days on occasion and I get sick very very quickly).

Outside sales is nice because I have no office to check into ever. And if I need an extra Vest treatment or something during the day I can head home and do it over my lunch break etc.

The one thing that working full time has consistnetly prevented me from doing is exercising as much as I want. It's just difficult getting up so early in the morning to do meds, working all day, and then coming home to then go exercise. Or exercise in the morning after meds and then already 3 hours has passed. I really struggle with that.

One day I think I'll have to cut my hours down.... but until then this gig has worked pretty well for me <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

I do outside sales. I work about 40 hours a week and I am extremely disciplined about my treatments. My lung disease is considered extremely mild but that is only because I adhere to my treatment regimine religiously (I've skipped days on occasion and I get sick very very quickly).

Outside sales is nice because I have no office to check into ever. And if I need an extra Vest treatment or something during the day I can head home and do it over my lunch break etc.

The one thing that working full time has consistnetly prevented me from doing is exercising as much as I want. It's just difficult getting up so early in the morning to do meds, working all day, and then coming home to then go exercise. Or exercise in the morning after meds and then already 3 hours has passed. I really struggle with that.

One day I think I'll have to cut my hours down.... but until then this gig has worked pretty well for me <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

I do outside sales. I work about 40 hours a week and I am extremely disciplined about my treatments. My lung disease is considered extremely mild but that is only because I adhere to my treatment regimine religiously (I've skipped days on occasion and I get sick very very quickly).

Outside sales is nice because I have no office to check into ever. And if I need an extra Vest treatment or something during the day I can head home and do it over my lunch break etc.

The one thing that working full time has consistnetly prevented me from doing is exercising as much as I want. It's just difficult getting up so early in the morning to do meds, working all day, and then coming home to then go exercise. Or exercise in the morning after meds and then already 3 hours has passed. I really struggle with that.

One day I think I'll have to cut my hours down.... but until then this gig has worked pretty well for me <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[MCGrad2006]

I just finished college and student teaaching. I was on the 4 1/2 yr plan...lol. The first foiur years went relatively smoothly. I was in the hosp once over those fours year during the school year...other than that I could schedule my cleanouts in the summer or winter break. It was a lot easier for me to do my treatments during these four years because I was in my dorm on a random basis between classes and whatnot. Although I hated to inconvenience my room mates by doing loud nebs, so moral of the story...I could ave taken better care of myself. I mean I always take my meds and stuff...just not always my breathing treatments.

Well this past semester I was student teaching in a third grade class. This means that I was teaching in the classroom (with another teacher) full time and planning lessons and correcting papers. So I would get up at 615, shoer and do my mornign routine, do one of my neb treatments ( I am currently in the aztreonam eflow neb study and have been for a year), then I would go to school...teach all day and then go back to my room. I would be in my room for not even a ten minutes, then I would get my Chest PT. Now this takes me till about 5, so I wouldnt be able to rest tll then. I would ususally lay down on the couch for a while and sometimes fall asleep...then get up at like 630 and eat dinner and then I would have to do all my planning and corecting. I ended up on IV's for the second time in six months two weeks after I was done student teaching. I didnt take as good a care of myself as I could have, but I was so busy getting everything else accomplished.

Granted this was probably a lil more stressful than a real job because I was getting graded on it, but I wonder what will happen when I go to teach full time. I worry about that but then again, if I get into a routine and start working while doing all my treatments that will definitely help. I find that its so hard to get into a routine, but then once you get into that routine you feel a lot better. I hope you feel better soon and welcome to the site!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[MCGrad2006]

I just finished college and student teaaching. I was on the 4 1/2 yr plan...lol. The first foiur years went relatively smoothly. I was in the hosp once over those fours year during the school year...other than that I could schedule my cleanouts in the summer or winter break. It was a lot easier for me to do my treatments during these four years because I was in my dorm on a random basis between classes and whatnot. Although I hated to inconvenience my room mates by doing loud nebs, so moral of the story...I could ave taken better care of myself. I mean I always take my meds and stuff...just not always my breathing treatments.

Well this past semester I was student teaching in a third grade class. This means that I was teaching in the classroom (with another teacher) full time and planning lessons and correcting papers. So I would get up at 615, shoer and do my mornign routine, do one of my neb treatments ( I am currently in the aztreonam eflow neb study and have been for a year), then I would go to school...teach all day and then go back to my room. I would be in my room for not even a ten minutes, then I would get my Chest PT. Now this takes me till about 5, so I wouldnt be able to rest tll then. I would ususally lay down on the couch for a while and sometimes fall asleep...then get up at like 630 and eat dinner and then I would have to do all my planning and corecting. I ended up on IV's for the second time in six months two weeks after I was done student teaching. I didnt take as good a care of myself as I could have, but I was so busy getting everything else accomplished.

Granted this was probably a lil more stressful than a real job because I was getting graded on it, but I wonder what will happen when I go to teach full time. I worry about that but then again, if I get into a routine and start working while doing all my treatments that will definitely help. I find that its so hard to get into a routine, but then once you get into that routine you feel a lot better. I hope you feel better soon and welcome to the site!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[MCGrad2006]

I just finished college and student teaaching. I was on the 4 1/2 yr plan...lol. The first foiur years went relatively smoothly. I was in the hosp once over those fours year during the school year...other than that I could schedule my cleanouts in the summer or winter break. It was a lot easier for me to do my treatments during these four years because I was in my dorm on a random basis between classes and whatnot. Although I hated to inconvenience my room mates by doing loud nebs, so moral of the story...I could ave taken better care of myself. I mean I always take my meds and stuff...just not always my breathing treatments.

Well this past semester I was student teaching in a third grade class. This means that I was teaching in the classroom (with another teacher) full time and planning lessons and correcting papers. So I would get up at 615, shoer and do my mornign routine, do one of my neb treatments ( I am currently in the aztreonam eflow neb study and have been for a year), then I would go to school...teach all day and then go back to my room. I would be in my room for not even a ten minutes, then I would get my Chest PT. Now this takes me till about 5, so I wouldnt be able to rest tll then. I would ususally lay down on the couch for a while and sometimes fall asleep...then get up at like 630 and eat dinner and then I would have to do all my planning and corecting. I ended up on IV's for the second time in six months two weeks after I was done student teaching. I didnt take as good a care of myself as I could have, but I was so busy getting everything else accomplished.

Granted this was probably a lil more stressful than a real job because I was getting graded on it, but I wonder what will happen when I go to teach full time. I worry about that but then again, if I get into a routine and start working while doing all my treatments that will definitely help. I find that its so hard to get into a routine, but then once you get into that routine you feel a lot better. I hope you feel better soon and welcome to the site!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[wallflower]

I work a 40-hour week, plus I do about 10 hours of volunteer work on top of that. While my health is pretty good, the nice thing about my job is that I can set my own schedule (within reason). So if I get sick and need more time in the morning for therapy, its not a problem.

Unfortunatly, when work gets busy, I start skipping am treatments because I'm not getting enough sleep, which runs me down. My goal this year is to create a scheduled routine and stick to it. I'm really bad about making myself a priority, so I blame myself for not getting all the therapy and exercise I need.

When I run myself down too much, I take a vacation day to catch up on rest and therapy - I find it brings my energy level back up again to help me get back on track (although I know this won't work forever).

 

[wallflower]

I work a 40-hour week, plus I do about 10 hours of volunteer work on top of that. While my health is pretty good, the nice thing about my job is that I can set my own schedule (within reason). So if I get sick and need more time in the morning for therapy, its not a problem.

Unfortunatly, when work gets busy, I start skipping am treatments because I'm not getting enough sleep, which runs me down. My goal this year is to create a scheduled routine and stick to it. I'm really bad about making myself a priority, so I blame myself for not getting all the therapy and exercise I need.

When I run myself down too much, I take a vacation day to catch up on rest and therapy - I find it brings my energy level back up again to help me get back on track (although I know this won't work forever).

 

[wallflower]

I work a 40-hour week, plus I do about 10 hours of volunteer work on top of that. While my health is pretty good, the nice thing about my job is that I can set my own schedule (within reason). So if I get sick and need more time in the morning for therapy, its not a problem.

Unfortunatly, when work gets busy, I start skipping am treatments because I'm not getting enough sleep, which runs me down. My goal this year is to create a scheduled routine and stick to it. I'm really bad about making myself a priority, so I blame myself for not getting all the therapy and exercise I need.

When I run myself down too much, I take a vacation day to catch up on rest and therapy - I find it brings my energy level back up again to help me get back on track (although I know this won't work forever).

 

[Chaggie]

I work a 40 hr + work week as a PM in the construction division of the hospital I work for, and granted I've been pretty lucky with my health, I don't have any issues with getting everything in, yet.

 

[Chaggie]

I work a 40 hr + work week as a PM in the construction division of the hospital I work for, and granted I've been pretty lucky with my health, I don't have any issues with getting everything in, yet.

 

[Chaggie]

I work a 40 hr + work week as a PM in the construction division of the hospital I work for, and granted I've been pretty lucky with my health, I don't have any issues with getting everything in, yet.

 

[LouLou]

I work 40 hr a week in a consulting firm. I must wake at 6:00am to do my AM treatments which take an hour and a half. Mid morning I break and do 10-15 min. of acapella clearance. Again in the afternoon I do acapella. When I get home I take my dog for a walk. If it's Tues or Thurs I go directly from work to the gym for an aerobics class and then once on the weekend. I cook dinner 3-4 nights a week including cooking ahead a meal or two on the weekends. My husband and I split household management 50-50 while I can handle it. After cleaning up from dinner (I'm dish girl - he's laundry man). I have 30 min. tops of free time before it's time to start my evening care routine. Then... it's off to bed. With this routine I get everything done and there's not a question of will I eat well tonight? or will I do my treatments? but obviously there is not a lot of spontaneity in my life and weekends have to be optimized for 'relationship care.' I thrive on routine and feel a great level of accomplishment just in living my routined life.

I will say it was such a relief once I started to be 100% compliant with my care...many, many years ago. Questioning whether or not we are going to care of ourselves isn't an option and it's a waste of energy. Two years ago I took compliance to another level by stating outloud that I am #1 to me (sounds weird, eh?) - how do I justify this? I remind myself that if I am not #1 then other priorities might never get me because I might not be well enough for anything but being sick. I evaluate my health weekly with my husband and we consider me our biggest ongoing project...especially now that I am pregnant.

We plan to reduce my work schedule before I show the signs that I need to... in 2-3 years is the plan but WE ARE FLEXIBLE. For now, he is in his post doc (working 6-7 days a week) so as long as things are going well (with my health and the babies health) we are advancing his career so that we can live comfortably on 1 income when the time arises that I can't make a dime. I have to say that concept is so strange...I've been saving money since I was 5 - selling lemonade and then my big boom started with a scrunchie business when I was 12.

I am more likely to only work part time for a short time 1-3 years before 'retiring' because of the 'look back' for SSDI and wanting to get the most benefits I possibly can. Who knows by then maybe it will be based on life time earnings and not previous 10 years.

 

[LouLou]

I work 40 hr a week in a consulting firm. I must wake at 6:00am to do my AM treatments which take an hour and a half. Mid morning I break and do 10-15 min. of acapella clearance. Again in the afternoon I do acapella. When I get home I take my dog for a walk. If it's Tues or Thurs I go directly from work to the gym for an aerobics class and then once on the weekend. I cook dinner 3-4 nights a week including cooking ahead a meal or two on the weekends. My husband and I split household management 50-50 while I can handle it. After cleaning up from dinner (I'm dish girl - he's laundry man). I have 30 min. tops of free time before it's time to start my evening care routine. Then... it's off to bed. With this routine I get everything done and there's not a question of will I eat well tonight? or will I do my treatments? but obviously there is not a lot of spontaneity in my life and weekends have to be optimized for 'relationship care.' I thrive on routine and feel a great level of accomplishment just in living my routined life.

I will say it was such a relief once I started to be 100% compliant with my care...many, many years ago. Questioning whether or not we are going to care of ourselves isn't an option and it's a waste of energy. Two years ago I took compliance to another level by stating outloud that I am #1 to me (sounds weird, eh?) - how do I justify this? I remind myself that if I am not #1 then other priorities might never get me because I might not be well enough for anything but being sick. I evaluate my health weekly with my husband and we consider me our biggest ongoing project...especially now that I am pregnant.

We plan to reduce my work schedule before I show the signs that I need to... in 2-3 years is the plan but WE ARE FLEXIBLE. For now, he is in his post doc (working 6-7 days a week) so as long as things are going well (with my health and the babies health) we are advancing his career so that we can live comfortably on 1 income when the time arises that I can't make a dime. I have to say that concept is so strange...I've been saving money since I was 5 - selling lemonade and then my big boom started with a scrunchie business when I was 12.

I am more likely to only work part time for a short time 1-3 years before 'retiring' because of the 'look back' for SSDI and wanting to get the most benefits I possibly can. Who knows by then maybe it will be based on life time earnings and not previous 10 years.

 

[LouLou]

I work 40 hr a week in a consulting firm. I must wake at 6:00am to do my AM treatments which take an hour and a half. Mid morning I break and do 10-15 min. of acapella clearance. Again in the afternoon I do acapella. When I get home I take my dog for a walk. If it's Tues or Thurs I go directly from work to the gym for an aerobics class and then once on the weekend. I cook dinner 3-4 nights a week including cooking ahead a meal or two on the weekends. My husband and I split household management 50-50 while I can handle it. After cleaning up from dinner (I'm dish girl - he's laundry man). I have 30 min. tops of free time before it's time to start my evening care routine. Then... it's off to bed. With this routine I get everything done and there's not a question of will I eat well tonight? or will I do my treatments? but obviously there is not a lot of spontaneity in my life and weekends have to be optimized for 'relationship care.' I thrive on routine and feel a great level of accomplishment just in living my routined life.

I will say it was such a relief once I started to be 100% compliant with my care...many, many years ago. Questioning whether or not we are going to care of ourselves isn't an option and it's a waste of energy. Two years ago I took compliance to another level by stating outloud that I am #1 to me (sounds weird, eh?) - how do I justify this? I remind myself that if I am not #1 then other priorities might never get me because I might not be well enough for anything but being sick. I evaluate my health weekly with my husband and we consider me our biggest ongoing project...especially now that I am pregnant.

We plan to reduce my work schedule before I show the signs that I need to... in 2-3 years is the plan but WE ARE FLEXIBLE. For now, he is in his post doc (working 6-7 days a week) so as long as things are going well (with my health and the babies health) we are advancing his career so that we can live comfortably on 1 income when the time arises that I can't make a dime. I have to say that concept is so strange...I've been saving money since I was 5 - selling lemonade and then my big boom started with a scrunchie business when I was 12.

I am more likely to only work part time for a short time 1-3 years before 'retiring' because of the 'look back' for SSDI and wanting to get the most benefits I possibly can. Who knows by then maybe it will be based on life time earnings and not previous 10 years.

 

[Grendel]

I see no one mentioned their FEV1 scores. I am confident that one's score correlates directly with the number of hours spent working in a week. Could everyone restate their hours and FEV1 scores?

My self, I am working a 40hr/wk job, in which I can work from home the first hour or two of the day. So I work 40hrs, but am not at home or able to perform breathing treatments while I work my 35 hrs (working) a week. I accommodate the situation by doing long treatments in the morning and after work. I have no life Monday through Friday as a result, no time to just relax. Working the 40hrs/week does compromise my health, though as like many other CFers, I don't have a choice.

My FEV1 baseline score is 41%.

Thanks.
Grendel

 

[Grendel]

I see no one mentioned their FEV1 scores. I am confident that one's score correlates directly with the number of hours spent working in a week. Could everyone restate their hours and FEV1 scores?

My self, I am working a 40hr/wk job, in which I can work from home the first hour or two of the day. So I work 40hrs, but am not at home or able to perform breathing treatments while I work my 35 hrs (working) a week. I accommodate the situation by doing long treatments in the morning and after work. I have no life Monday through Friday as a result, no time to just relax. Working the 40hrs/week does compromise my health, though as like many other CFers, I don't have a choice.

My FEV1 baseline score is 41%.

Thanks.
Grendel

 

[Grendel]

I see no one mentioned their FEV1 scores. I am confident that one's score correlates directly with the number of hours spent working in a week. Could everyone restate their hours and FEV1 scores?

My self, I am working a 40hr/wk job, in which I can work from home the first hour or two of the day. So I work 40hrs, but am not at home or able to perform breathing treatments while I work my 35 hrs (working) a week. I accommodate the situation by doing long treatments in the morning and after work. I have no life Monday through Friday as a result, no time to just relax. Working the 40hrs/week does compromise my health, though as like many other CFers, I don't have a choice.

My FEV1 baseline score is 41%.

Thanks.
Grendel

 

[Debi]

I work 40+ hours a week as an administrator for a state medical program. I've been working since I was 16. The truth is that I love my work and I thrive on it. I am on oxygen 24/7, but have gotten used to dealing with carting the tank around with me. I am fortunate to have worked out a flexible arrangement with my boss to accommodate times of illness or when I just get a slow start. I also have the ability to telecommute and link into my office computer from home, which is helpful because I can do breathing treatments or the vest while doing some of my work on the computer. I earn leave time, which I generally use once or twice a year if I have an exacerbation of PA. I have my treatment regimen down to an hour in the am and an hour in the pm. I read a lot, and also make beaded jewelry. When my kids were younger, weekends found me at swim meets and soccer games, but my daughter is now away at college and my son is in high school and more independent, which gives me more time with my husband and for myself on Saturday and Sunday. I find that I actually do better overall when I can go to work because it keeps me active and the mucus looser. At home I tend to dwell on what I can't do. At work I am surrounded by evidence of what I can do. I personally have never enjoyed house keeping activities, so when I am home I find no pleasure in doing them (except cooking - I love to cook!). I think the best thing is, wherever possible, for people to do what gives them pleasure and supports them in their physical and mental health. For me, it's working outside the home. For others, it is being at home. There is no right or wrong answer, only what works for you.

Have I ever neglected my treatments to do my work? Oh sure. Have I ever neglected my work to take care of my health? You bet. Life is an ongoing balancing act. I think it is smart of you to assess your life and how you can get the most out of it. One of these days I suspect the balance will swing for me and I'll be ready to stop going to an office job. But so far, it's still working well for me. Good luck!