When did you decide to stop going to work?

[MissAlexsBP]

Hi all!

When did you make the decision to stop working? I am currently 29 years old and my PFTs are in the 60's and during good appts mid-70's.

Currently I work around 20 hours (retail), however, that still leaves me tired and I'm finding it hard to manage keeping up with all of my nebs, exercise, and sleep.

How do you manage it all?

I am extremely fortunate to have a very supportive husband; we are at the point where we are evaluating whether I should stop working (to preserve my health) before I am too run down and have managing my health essentially be my job, and supplement 'free time' with volunteering or working on an as needed basis (couple hours a week), or do I continue working the 20 hours while I can and not stop working until my PFTs are lower?

I look forward to hearing other's experiences/insights!

Thank you!

 

[kenna2]

I stopped working (which was part time) around when I was either 29 or 30. I kept getting sick and was frequently in and out of the hospital every 3-4 weeks. I made the choice to stop to see if this was my CF that was getting worse or if the actual work environment (retail) was making me sick. I stopped, got on disability, and now taking care of my health is my full time job. I'm glad I did. My health got better and I am stable now. It really relieves a lot of stress on you emotionally and physically not having to worry about working around appointments and hospitalizations. I can now focus on me, keep myself away from the public during sick seasons, and enjoy life. Having CF is a full time job but I'd highly suggest if you go this route that you make an effort to get out as much as you can or do something to get out of the house.Volunteering is great because you can always say no and there's no commitment to it. There are times when I do miss working and I hope to someday get back to it. I will say that keeping your lung functions as high as possible should always be your goal. Don't wait until they start to really fall to call it quits. It's harder to get lung function back than it is to maintain it.

 

[MissAlexsBP]

@Kenna2 Thank you for your response! I feel like since I'm still relatively 'healthy' I should keep working, but your comment about not waiting until my PFTs really start to fall is what I am afraid of doing to myself. As silly as it sounds, thank you for the confirmation that I don't need to wait until I'm sick to look into stopping to work.

 

[LunaFaith]

I'm not sure what your health insurance is like but from what you wrote and what I know I do not think you qualify for disability, I actually stopped working before I was diagnosed for a surgery and when we discovered the CF I just never went back, sad to say my health was so bad, 75 degree curve in my spine and PFT's in the 30's that I didn't have to fight for disability, actually I am afraid to work and loose my benefits, my income (SSDI) sucks but the health insurance makes it worth it, to combat boredom after I was first diagnosed I went back to school and recieved 2 associates degrees, I actually still check the community college classes each semester just to see if there is something new I'd like to learn. Maybe you should ask your clinic social worker and doctor their opinions as they are the best informed to give you such advice

 

[MissAlexsBP]

@LunaFaith Thank you for your reply! I am definitely going to bring it up with my clinic

 

[joshephkirley]

You can work till the last breath of your life.

The day that you stopped working, your body will get more sick day by day.

 

[scanboyd]

I stopped when I as 57 and my FEV 1 was 28%, had worked 35 yrs. in a hospital in Nuclear Medicine days nights wkends. and on call 24hrs. at a time. My Dr. and my wife both strongly wanted me to retire and take better care of my CF. This was 13 yrs. ago, fixin to turn 70 in couple months. Since retiring I have been working out on a regular basis 3 days a wk doing neb rx at more relaxed schedule, taking my time and getting the best results possible in getting mucous up and out. I now miss very few neb rx over the course of a yr. as opposed to when I was working 40+ hrs. a wk I would miss them on a regular basis and was always in a rush and not getting the best possible purge. Since retiring I have not had any Iv's or hospital visits for any treatment.
God has more than blessed me. Thank God for a Great Wife who retired 4 yrs. ago after working 41 yrs. in Radiology. Retirement life is way more fun with the wife retired.
Good LUCK TO ALL!

 

[stylecomfy]

I think it depends on your health (subjectively how you are doing, not just the numbers) and the type of job (stress, hours, flexibility). I stopped working for a few years when I was 28years old and my FEV1 was gradually declining to about 60%. I was a school teacher and while I was not that 'sick' by normal CF standards, I really battled to cope with everything and I could not continue working at that time. During the off years I earned a very small disability income through my first company so I took time to recover then decided to make a career change, completed the necessary courses and after a few years I was able to go back to work at a different job. Of course this all happened as a mixed up chaotic process while I tried a few different job options and freelanced, not planned and linear how it sounds now.

I've now been 'working again' for 7 years and my FEV1 is stable in the low 70's. It is graphic design, so while it is a full time position, it allows for 1. flexible hours 2. working remotely when needed and 3. an office setting that is not so tiring so it's easier to juggle treatments and work load. For what it is worth, I was very thankful for the long break I was able to have to get my health back on track and decide what to do with the next stage of my life, but overall I can say I am much happier working compared to when I was not. I enjoy my work life with its financial and emotional rewards, but I remain flexible about the future. It is worthwhile to consider these things now before your health declines...if the job is not suited to your health, it might be the right thing to stop working entirely and/or consider other job possibilities that better meet your criteria. For me it definitely worked out well.

 

[Starfall99]

I was a full-time social worker doing in-home family therapy, and finally had to stop 2 years ago. Fall 2014 I had a bad exacerbation after catching something from one of my clients, and it took months to get back to working full-time -- then shortly after resuming working full-time, I had another exacerbation and was out of work for another 6 weeks. At the time my FEV1 was in the mid-60s and would slide into the low 50s during exacerbations. I had a very hard time deciding to stop working, partially because I loved social work and didn't know what I'd do without it, but also because I felt like I was being a wimp and wasn't sick enough. Well, I easily qualified for Social Security as well as disability from my employer, and it was SUCH a relief to just listen to my body and take care of myself instead of forcing myself to work and wearing myself out.

I'm not sure if it's still active, but I applied for social security through Beth Sufian at the Cystic Fibrosis Social Security Project. I DEFINITELY recommend getting her help if possible. She'll review your medical records to see whether or not you're likely to succeed at getting benefits, and if you have a good case she'll help you understand and complete the application. With her help my application was approved within 2 months, I couldn't believe it! Just make sure you don't try to apply on your own first, I was only able to qualify for free legal assistance through the Cystic Fibrosis Social Security Project if it was my initial application. Ask your clinic if this project is still active and how to contact them.

Good luck!

 

[chauhdryhuzaifa]

This is a deeply personal decision and there's no one-size-fits-all answer. Balancing health, work, and well-being with CF is a constant negotiation. While your PFTs suggest room to maintain employment, your fatigue and difficulty juggling treatments and exercise indicate a potential tipping point. Consider prioritizing your health now to prevent further decline. Discuss with your support network and medical team to weigh the pros and cons of each option. Explore ways to supplement income like volunteering or limited gigs before relying solely on disability benefits. Ultimately, listen to your body and choose the path that preserves your energy and empowers you to thrive, whether that's focused healthcare or a modified work-life balance. Remember, taking a step back doesn't mean giving up - it could be the key to a more fulfilling and sustainable future with CF.

 

[dbtoo2]

You can work till the last breath of your life.

The day that you stopped working, your body will get more sick day by day.

That's not true! You won't get more sick because you stop working. I do MORE today, Because I stopped working. Increasing difficulties is a way of life in a genetically degenerative disease. You cannot always avoid issues. But many are, depending on many things to include, but not limited to" Your attitude, your compliance, your health team, your home environment, your willingness to fight. Never give up, and Never give in! I went out of work at age 63. Not because I was sick, but for other factors. Because I was sick, I was able to get long term disability which bridged the financial gaps. Stopping work Too early, just means there are less finances you will ever have.