When to stop working?

[MissAlex27]

Hi all,

I am sure there has been a topic on this in the past, so I apologize if I am repeating anything. I tried to search for it but didn't see anything.

I am just wondering at what point people here had to stop working full-time, and how you came to that conclusion?

I am still fairly active when I'm not sick, however over the last 2 years I have had constant tune-ups and am on either IV or oral antibiotics quite a bit. My work has been pretty understanding up to this point, but I can't imagine they can continue to let me be out for 2+ weeks at a time every few months. I am pretty scared I will lose my job eventually.

At the same time, I don't know how to go about finding a new job since I would have to "prove" myself all over again and at this point I can't stay off antibiotics for longer than 3 months at a time. That's not a great first impression!

I would appreciate any advice, and I would love to know what was the final reason people stopped working. Was it from being sick or just not being able to find a place that is accepting?

Thanks everyone!

___

Alex, 27 year old female with CF. Diagnosed at 9 months.

 

[Twistofchaos]

I think when it starts to take a significant toll on your health, and when it starts to cost you years of your life. (Ie.: neglecting treatment and exercise for work and stress.)
But where that point is and how much of your health you are willing to spend for the possible satisfaction and social contacts you might get out of work is just much different for everyone.

Because someone that is outgoing and puts much value to a social circle, some status and fitting in will probably want to keep working till they are rolled off in an ambulance or worse.
Me, I'm introverted and not in much need for daily social contacts and to play along the societal status games so for me the choice quickly tilted towards my health.

But internationally where and how you are situated financially also makes a big difference ofcourse. I'm lucky here in Holland where disability somehow allows me to live on my own.

But yeah if you can afford it then to stop working might do your health a lot of good. And there's still a lot (more?) to life even when you have to answer "full time CF'er" to "what do you do?" if you are willing to see it, and even when others struggle to see it.

 

[kgfrompa]

This was a constant battle for me I made it five years ago to stop working and take care of my self It was the only way to do my treatments and rest when I did not feel well.The hardest part for me was being broke and struggling to make ends meet as it still is a struggle .I have SSI for my income and it is nearly impossible to make ends meet.On another note I am much healthier as I have time for all my treatments and time to rest when I am not feeling well.I know for me it was a process and it took time to accept.Good luck to you.

 

[nocode]

Last year, at 28 yr old, I was made redundant at a job that I loved and lived for. This ended up being a blessing in disguise. I can't believe how much I was pushing myself for years. I don't think I would have ever stopped if I hadn't been forced, and all this with an FEV1 of around 33%! (I was a staff trainer, which involved delivering trainings to company staff all day, several times a week).

Since I stopped working, I have started to go to physiotherapy (exercise) 3x a week, I am eating much better (I have put on 15 lbs, which for me is great since I've always been too thin) and I get to rest whenever I need to. And it's not until now that I realize how much I needed all these things to keep myself as stable as possible.

In my case, I have only had 2 hospitalizations in my life and one was just a tune-up, so I never had to miss work for that, and I didn't even get sick that often. The problem for me is, as stated above, my miserable lung function. The job was basically draining me of all my energy.

Like TwistofChaos, I also live in the Netherlands and I feel so lucky that our disability benefits allow us to live somewhat comfortably.

From what you said, it sounds like this situation is giving you a reasonable amount of stress to deal with, which probably has an impact on your health.. so I hope you will be able to do what's best for you and your health.

Good luck!

 

[MissAlex27]

Thank you guys so much for your responses! It really helped me a lot. All of my CF friends have passed, and so I don't have anyone in my life to bounce these kinds of questions off of, so I really appreciate it.

My husband is in the medical field and will be graduating school in May, so we have been talking about me not working anymore once he's done. I know that if I left the decision up to myself, though, I would never admit that I had to stop. I have wondered in the past if my PFTs would increase if I didn't have the stress of work, but I never really thought about how working affected my overall health. (I was always just stuck on that I would have to stop working because a company couldn't let me be out so much)

After reading your replies, I started thinking about the times I have skipped treatments in the morning because I overslept (and I overslept because I'd stayed up late the night before finishing my Vest or treatments!) and I had to get to work on time. Or the times I had to work late and couldn't do all my treatments that night. And that's when I'm feeling fine! When I'm sick, like I am now, it's almost impossible for me to take the time to rest unless I'm in the hospital. (They rarely admit me because my husband can take care of me at home)

Anyway, you guys have given me some great food for thought and I really, really appreciate the replies.