Working part time or less. What led you to decision?

[erock77]

So I've posted before about being re-evaluated for my long-term disability benefits. I enrolled 2 years ago to work part time. I'm an engineer, worked full time for most of 8 years. I noticed a correlation between long hours and feeling worse with a gnarlier cough by the end of the day. Especially if working 8+ hours a few days in a row. Obviously my symptoms can vary with prolonged stress levels. So I'm part-time now, supplementing with LTD insurance, I was lucky enough my company had this opportunity.

Anyway, in preparing for my review I'm trying to further convince myself why I should only work part time. I'm doing 2 full days per week, 3 if it's busy. Then my days off I exercise, eat better, take care of chores, have med visits, take naps, relax and be leisurely, etc. I may not have made this decision yet if the supplemental income option was available, but my doctor had recommended it years ago when she saw the impact on my health.
I'm wondering, what led others to their decision and how do you think it's helped vs working full time.

Thanks!

 

[jaimers]

i stopped working full time because i was in the hospital more frequently, tired and run down all the time, and literally didn't have the energy to do anything but go to work and then come home, eat, treatments, sleep. and i was STILL tired. i couldn't make it to the gym consistently because working out made me more tired and there wasn't enough time for me to "recover." my doctor said she didn't really support me working full time anymore because off all this. I went out on STD benefits about 5.5 months ago and i've about exhausted those so they are rolling over into Long Term disability benefits. i work 5 hours per day, 5 days per week. this allows me to get up, do vest/nebs, go to the gym, and then go to work. I've actually seen my PFTs increase to my immediate post-IVs numbers without actually having had IVs in 7 months. I'm not tired all the time and actually have enough energy to DO STUFF! I feel like I got my life back to a degree that I haven't had in a long time (since college probably).
Working part time was a hard pill for me to swallow at first because i'm normally one to just try and power through even if it ends up being detrimental to my health but honestly it's been the best decision I've made in years!

edited to say I go to the gym 3-4 days per week. exercise truly truly truly helps so much!!

 

[Aboveallislove]

I can't speak as a CFer, but as a mom, I see all the regular stuff our son has to do and that's part of why we are homeschooling--I can't imagine having to be in class all the time, doing the maintenance and having any down time, enough sleep time etc. I know others do it and it works fine for them. He's young now, but the approach so far has been that we just do a little every day, all year round, so we have time to do other stuff, all the treatments, lots of sleep (that might be more for me than him!), lots of fun time, etc. And as the "grown up," I often see my peers in "the rat race," stretched at all ends, and I now appreciate so much more that life is to short to be on a tight schedule trying to fit it all in. Part-time sounds heavenly if do-able. Good luck!

 

[gunelle]

I would love to work part time. I also feel that my health suffers if I work long hours and get little sleep. And to have time for other things other than work sleep and treatment. For me the issue is the cut back in salary that keeps me from applying. I would definitely try if I could.

 

[MichaelL]

I started working part time when I was first diagnosed with CF. I was working four days a week and taking a long weekend. After about a year and half, I went back to full time. A few years later, I started having more serious health problems and went back to four days a week. During these periods of working part time, I found it easier to get in more exercise time. It also just gave me a chance to catch up with things. I think it was helpful overall for my health.

In 2011, I started long-term IV treatments for mycobacterium abscessus. Initially, I tried to work the equivalent of three days a week spread over the entire week. I eventually found this too difficult to keep up with my health and work, so I went on disability. It seems my daily medical routine has increased quite a bit since that time. I don't think I could work part time and keep up with all my medical stuff anymore.

 

[erock77]

Thanks for sharing Michael. What were the major med routine changes that made it harder to work 3 days?
I've been working 2-3 days/week for the last year or so. My days still fill up, but I go a slower pace and there's more variety in my life. I definitely use the extra time to exercise, eat better and generally do things that are good for me. I had all these other plans of how I'd spend my time, but I still end up playing catch up on life. I feel lucky that I've been able to work part time and supplement with disability. I really don't want to lose it.

 

[welshwitch]

Thanks for updating us, Eric. And I totally understand your point of view. Working full time with CF is difficult, if not impossible. I work my butt off 5 days a week, full time with 1.5 hour commutes each way and it's not easy. One day I may be in your shoes, so thanks for keeping us posted. Good luck with the interview!

 

[Dank]

I have debated this a lot lately (working part time..), especially after being really sick earlier this year and still not getting back to the same lung function that I was previous to getting sick. I need to get myself out of debt before I can afford to do that though. I'm trying to find different jobs with more flexible hours, but haven't had luck. I'm like welsh here, trying to push myself to live a normal life (40-60 hours a week of work) isn't easy, and I definitely can relate when you take time off you take better care of yourself.

Finding a good work/life balance is important. If only employers were more understanding it would be easier.

 

[keefer11]

Like many others I started working part time because there was a direct correlation between working full time and how often I had to go on IV's. For me a lot of it had to do with not getting enough sleep/rest and I might skip treatment because I wanted more sleep. I feel like I didn't have enough time to take care of myself properly when I worked full time. I was on IV's several times a year when I worked full time and as a result got a port. Funny enough, I switched to working part time and haven't used my port since. I still need to use oral antibiotics a couple of times a year, but I haven't been on IV medication in probably 3 years, and that is when I made the switch to working part time. I consider myself very lucky to be able to work part time and I wouldn't be able to do it if I didn't have my boyfriend whose job makes up for my working part time. Having a second income makes this all possible, if I was single, I would probably have had to continue working full time and just been sick all the time and not as healthy. Or move back in with my parents and work part time, but that wouldn't be any fun

 

[MichaelL]

Eric -- in terms of my increase in medical routine, things have layered on over the last few years. First, I started long-term IV treatments for mycobacterium abscessus in early 2011. I've been on at least one IV med this entire time and sometimes have an additional IV.

Another change is lung clearance takes more time than it did previously. Three years ago, I would skip flutter in the morning if I was going to the gym. I now find that I cough too much at the gym if I don't do lung clearance first. I have been doing hypertonic saline once a day for years, but I've added a Ventolin nebulizer in the afternoon.

Three years ago, I went to the clinic every two to three months. Now, I go every two to three weeks. A clinic appointment is half a day or more, which would be hard to manage with a work schedule. On top of these items, I have additional pills, powders and liquids that I didn't take a few years ago. Some things may seem small individually, but when you add it all up it affects time.

When I finally go off all of the IV meds, they'll likely add an inhaled version of one of my antibiotics that will be an additional 40 minutes or more per day. This will more than replace any time I save from going off IVs.

Maybe more detailed than you were looking for, but it all adds up. I think if I tried to go back to work, it would be too stressful to manage work time plus medical time.