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Adults living with CF
- Thread starter smbriggs
- Start date
I am looking to see how other adults stay healthy. When I was younger it was so much easier. Now, I have a hard time finding time to exercise. I am always tired after working a full day that I just want to go home and go to bed. I always force myself to eat but instead of doing my vest and my meds, I often just go to bed. How do others juggle having a job, a family, exercising, taking meds, sleeping and enjoying their lives. I have always had a positive attitude about life and my CF but lately I am feeling overwhelmed. I have been pretty healthy and have noticed I have been slacking with my CF routine. Does anyone else do this? Any input is appreciated.
I have a hard time staying healthy & I no longer work. Pacing myself is ONE of the biggest thing. I use to do whatever had to be done & get it over with thus wearing myself out. I now pace myself. Certain things get done on certain days etc etc etc. It has also helped that I taught my daughter to be a helper. Since she was old enough to walk she was putting her things back. Now if I could teach the animals to do that. Routine is the biggest thing for me. ON days thats hubby& daughter are home I get all messed up. My weekday routine makes things great. I get most/everything done around the house, do my treatments, spend time with hubby & daughter, chat/post on the computer & get to bed when I need to. It wouldnt be that easy if I was working. I am an EXTREMELY organized person (obsessively) which helps also. If I walk I walk past something that needs to be put away, I grab it & put it where it should be enroute to the bathroom or whatever. I try to use my time wisely. There are definitey days that I want to sit on my butt & do nothing including treatmemts. I am entitled to sit on my butt, but I try not to skip treatments. I use to be able to do it & not feel it immediately. Now by the end of the day, if I skip the am. treatment, I am feeling. I would also say much of it is mind over matter. Usually around this time of year I get the winter blues & dont care about much which makes it hard to stay focused & motivated. I make myself the best that I can. Each day at a time!
I have found not working has made a huge difference in my health. I now have time to sleep whenever I naturally get up, do all my meds and treatments, eat properly, get to bed on time and work out. Although I do battle day in and day out with not working and feeling worthy, I am getting better at that!!!! If you have to work then maybe something part time or flex time. I feel for you. When I worked Full time and then went to the gym it was a long day! I do not know how I did it. I was younger and my lungs were better and I had less complications as I do now, so I am sure that all makes a huge difference. I suggest to not EVER skip treatments. I know when I have at night cause I was so tired it was not worth it cause i ended up coughing all night so I defeated the purpose of going straight to bed. Quality of sleep not quantity.
I would say if you do not have to work don't. But if you do I commend you and hang in there and do the best you can.
I thank the Lord that I am fortunate enough not to have to work cause it has made a major difference in my health. Now I just gotta wrap my head around that idea and not get caught up in worthiness issues cause I do not work.
Jennifer 33yrs old, 34yrs old on Jan 29th, CFRD and Osteopenia
I would say if you do not have to work don't. But if you do I commend you and hang in there and do the best you can.
I thank the Lord that I am fortunate enough not to have to work cause it has made a major difference in my health. Now I just gotta wrap my head around that idea and not get caught up in worthiness issues cause I do not work.
Jennifer 33yrs old, 34yrs old on Jan 29th, CFRD and Osteopenia
Pacing yourself & knowing your limits. These are both relatively simple concepts, but sometimes truly difficult to put into effect. Allow yourself the extra rest & help that you need. I don't know what your support system is like, but I think you'll find that the people around you WANT to help. Let them. This is good for all concerned. I definitely still get frustrated w/ my limits, but I think I've also developed some good qualities from the necessity to slow down.
I remember when I was 22 & there was no stopping me! I could work all day & stay up all night. It was hard to make that transition in my late 20s/early 30s of realizing that I couldn't do everything. But, you know, even healthy people slow down eventually. It just happens a bit quicker w/ people w/ CF. I think this realization & the ACCEPTANCE is a big part of the battle.
Hope this helps,
Julia, 37, CF
I remember when I was 22 & there was no stopping me! I could work all day & stay up all night. It was hard to make that transition in my late 20s/early 30s of realizing that I couldn't do everything. But, you know, even healthy people slow down eventually. It just happens a bit quicker w/ people w/ CF. I think this realization & the ACCEPTANCE is a big part of the battle.
Hope this helps,
Julia, 37, CF
I never skip the important things. But few times a week, I will avoid doing my vest at night. I always do it at least once a day. I walk several times a week on my luch break and also go to the gym several times a week at night. Can a person with CF over do it with exercise? Aslo, no one ever talks about what normal PFTs are for people in their 30s. I think mine are good but I have no one to compare it to. My Doctor only tells me when they are bad, is that normal? More input needed.
thelizardqueen
New member
I don't work at the moment, and I find that I feel a lot better. I've always worked full time, jungled boyfriends, a social life and everything else that had to be done in my life. I find that with so many factors in your life, you cannot give 100% to every area, and eventually something has to be cut. I cut work out, and am now able to focus 100% on my health. I get up when I get up (I don't tire myself out anymore), I'm able to do all my treatments on time, I can eat 5 meals a day, and I find my stress level is way down. Its stressful trying to lead a normal life, going to work when you're sick, or worrying about whether you'll be able to keep your job or not when you do call in sick.
bgchastain
New member
I agree to pace yourself. I am a real estate agent, so I get to set my own hours. I couldn't imagine having to work a 9 to 5 job. The stress would be too much. I looked into this job for the simple reason of being able to come and go as I please. Once I got into it I loved it but this line of work wasn't my first choice. I would say try not to push yourself, we already have so much stress on us with our health alone that every little thing we add to it can really make a difference.
My FEV's are around 45- 55%, I go into the hospital about once a year. I was diagnosed when I was 5 yrs old and stayed pretty healthy until I hit college. My health started to decline but I could've kept it up if I would have taken better care of myself during those years, but I sure did have fun<img src="i/expressions/face-icon-small-smile.gif" border="0">
Hope this helps answer some of your questions
My FEV's are around 45- 55%, I go into the hospital about once a year. I was diagnosed when I was 5 yrs old and stayed pretty healthy until I hit college. My health started to decline but I could've kept it up if I would have taken better care of myself during those years, but I sure did have fun<img src="i/expressions/face-icon-small-smile.gif" border="0">
Hope this helps answer some of your questions
Can I ask how the people who are not working can do that? Especially the ones in their early 20s, like Lizardqueen. I understand if you have a husband but other than that how do you support yourself. I totally agree it would be easier and better not to work...i just got back from an eight hour day, have to do two more hours of work, have to see the new boyfriend, and do my meds all while being sick! so how can you cut out work...would love to be able to so need suggestions! Thanks
Sue 23w/CF
Sue 23w/CF
I have only been hospitalized 3 times in my life. Which have been in the past 3 years. My work is very understandin gof my CF. They never give me a hard time if I am out sich or even feel like coming in a few hours late. I am also starting a clinical study and my boss is very supportive. I am married so if I need to stop working my husband can pick up the insurance. But I find working keeps me positive. I try to live a normal live. Some days it is very hard to do but I feel like a do a pretty good job at it. I was very healthy when I was young so I think now it is harder to accept that I am getting sicker and can't be completely normal.
serendipity730
New member
Stephanie,
Hi. I guess right now I don't have the typical adult life, because I am in graduate school. I juggle a 2 day a week internship (which I drive an hr each way to), 2 days a week of class, 1 day a week of work (at my father's store), and writing a thesis. I am usually pretty tired, but I keep on top of my health care. The only area that sometimes gets sacrificed is exercising. I usually only exercise 1-2 times a week, when I know I should exercise at least 3. I, too, worry about juggling a household, job, and social life in the future. Currently, I still live with my parents, which is a huge break. But, in June, I am moving in with my fiancee. He is a very helpful man, so I know he won't leave all the housework to me, if he knows what's good for him<img src="i/expressions/face-icon-small-wink.gif" border="0"> The thought of not being able to work after all the schooling I have gone through terrifies me. I hope I will always be able to work at least part time. So, that's my story. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi. I guess right now I don't have the typical adult life, because I am in graduate school. I juggle a 2 day a week internship (which I drive an hr each way to), 2 days a week of class, 1 day a week of work (at my father's store), and writing a thesis. I am usually pretty tired, but I keep on top of my health care. The only area that sometimes gets sacrificed is exercising. I usually only exercise 1-2 times a week, when I know I should exercise at least 3. I, too, worry about juggling a household, job, and social life in the future. Currently, I still live with my parents, which is a huge break. But, in June, I am moving in with my fiancee. He is a very helpful man, so I know he won't leave all the housework to me, if he knows what's good for him<img src="i/expressions/face-icon-small-wink.gif" border="0"> The thought of not being able to work after all the schooling I have gone through terrifies me. I hope I will always be able to work at least part time. So, that's my story. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi Stephanie, as others have said...pacing yourself is a biggie. I am 34, but I was just diagnosed not too long ago, long story....just call me atypical CF. I also have muscular dystrophy, a type that doesn't rear it's ugly head until the 30's, 40's or 50's...it's pretty rare. Basically, my CF was pretty mild until I had to get vented (my diaphragm does not function, off the vent I would die as my volumes are worse than a baby's). I now grow cepacia, have pancreatic issues. I am very religious about my treatments, vest therapy etc, because if I don't do them, my cepacia gets out of control. I have already been in the hospital about 5 times since June for IV's and pneumonia. Prior to the vent, I was on O2 and BiPAP, could still move around a bit better than I do now, I did pace myself.....for instance, when I showered, I had everything there, I didn't have to go back and forth and get short of breath. I did that with everyting. I had alot of respiratory infections then, but not as severe as I get them now. Know your body, I used to put off getting treatment but of course with that came consequences. I know now that if I even fart wrong to call the doc LOL!
Prior to my illness, I did work as an ICU nurse until I could no longer walk and breathe at the same time. I now get SSDI, live with my mother as well and have insurance through medicare. My kids also live with me. It gets testy sometimes, but I have learned to take that in stride as well...my kids are wonderful with my vent, as is my mother. All have been trained on it's function as well as emergencies that may pop up. I couldn't ask for a better bunch! Any questions, just give a holler! Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
Prior to my illness, I did work as an ICU nurse until I could no longer walk and breathe at the same time. I now get SSDI, live with my mother as well and have insurance through medicare. My kids also live with me. It gets testy sometimes, but I have learned to take that in stride as well...my kids are wonderful with my vent, as is my mother. All have been trained on it's function as well as emergencies that may pop up. I couldn't ask for a better bunch! Any questions, just give a holler! Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
thelizardqueen
New member
I worked full time up until last summer when I had to go on medical leave. Thankfully, because of work I stocked up quite a bit of unemployment and med leave time. I've finished my med leave, and am currently on unemployment until June. After that I think I might look into disability - not sure whats all involved in that though. I currently live with my boyfriend, who up until December was working parttime as a bartender, so together we both made meager paycheques. Thankfully, he just got a new job, and is training to be a conductor for CN - so the pay is very excellent, and the benefits are outstanding. If I were on my own, I don't think I could get away with no working unless I was living at home. You might want to look into getting disability maybe. I'm not sure how everyone else on here are able to not work and support themselves, but disability is definitly something to look into. My work at first was very understanding of my condition, but once I started to miss quite a bit, they didn't much care for keeping me around. I find now that I don't work, my stress levels are a ton better. A year ago, if I were told that I shouldn't work I would be upset, but I see now how much it benefits me. The only thing I have to work on now, is that feeling of being slightly useless, watching the bf go off to work, and knowing that I'm not making a significant contribution to the household income.