Work with pbc

Is there people out there that are in work as I would like to continue to work as I am the bread winner in the house as my husband can not work because of his cf and I do enjoy my work I work night as it is a little slower than days we on nights help each other I just want to live my life as I did but so scared and sorry for being a pain I only have you on here to talk to as I can not trouble my husband with it he has he health problems thank you all

18 Replies

  • I think that is a very individual decision, one that is based on your health and in consultation with your physician.

    In my case, absolutely nothing changed. I continue to work (4 days a week which I have worked for years.) since my diagnosis 6 months ago. I have very few symptoms and my LFTS are all good. I am more fatigued in recent months but if I pay attention to self care and ensure I sleep well, eat healthy, and manage stress effectively it balances out just fine. Good luck with your decision.

  • I still work I'm self employed work 7 days a week. I have to not much choice.

  • I worked full time until recently when I retired at age 62, i was lucky I had flexibility in the hours I did . Retiring was nothing to do with having PBC and I find being at home is more of a struggle for me than working it seems like the fatigue is worse now I do less.

    It is an individual thing, but your work place should make some adjustments for you so you can continue if that's what you choose to do.

  • Am still working , i do 12 days on two day off and i've got to say i starting to find the afternoon's am getting tired , but still keep going

  • Hi Cherry. I used to work in a high powered stressful job which I struggled to keep because I used to work more than 84 hours a week. As the disease progressed I struggled more and more and had to eventually give it up. I then took up a part time job because I missed working. Fatigue and pain took its toll again and I ended up giving that job up after only 9 months. This time the travelling really tired me out too. I think a lot has to do with your employers attitude too.

  • I work, I was diagnosed with PBC in December 2009, worked full time upto April this year, I have now cut down to 15 hrs a week.

  • I was diagnosed a year ago, I still work full time. Sometimes it's hard as tiredness is a big problem, most nights I'm in bed by 8 or 9 and weekends I don't do a lot. Like you I am the main bread winner and have to work. I have had a lot of colds and infections but still going

  • Its different for each person. Some people suffer worse with the fatigue and bone pain than others. Don't feel guilty if you are one of these. If some people can work its not that they are more resilient or able to fight through the fatigue better than another person, its because the pbc is not effecting them the same as you. I don't suffer with the itch but I wouldn't deny that another person suffers with it and I don't feel I am In some way managing my pbc better than them because I don't get it. If you are able to work and need to thats ok but if you are not able to because you will eventually collapse with exhaustion then no amount of saying that you have to work will be possible.

  • I still work although I am passed retirement age. Sometimes its hard coping with the tiredness but as I enjoy my job I am happy to continue working. Be positive and if you enjoy your work there is no need to stop working.

  • I too am the main bread winner and continue to work full-time but if it wasn't for the support of my husband, who also works full-time, I wouldn't cope. He usually does most of the cooking and majority of daily cleaning chores, he notices if I'm particularly tired after work and encourages me to have a nap so it's definitely a partnership. I have to say I really enjoy my job and have a lot of support from my colleagues and manager and maybe if I was working elsewhere wouldn't be able to manage full-time work. I hope you work things out for yourself but try not to stress too much it doesn't help our condition. :)

  • I was diagnosed April 2009. In 2012 began a 2 year study program along will working full time. It was tough, but my husband was a tremendous help. I obtained my certification and continue to work full time. I truly believe that it depends on the individual, your state of health and your determination. I was just stubborn enough not to let this condition take charge of my life.

  • I work full time but only been diagnosed recently. To be honest it's a relief to actually put a reason to my constant tiredness. I have just changed jobs in my company and am finding it quite stressful at the moment as have had to hit the ground running often working 10 hour days and this is then having a knock on effect to my fatigue, so I have been worrying if I will be able to continue at this pace. I haven't told my personnel dept about the PBC yet but I may do that. I think it will settle down once I'm up to speed with everything and then I'll have to see how I'm feeling, I can't afford to stop working so just hoping I can carry on for at least the next 10 years!

  • I hope I can carry on for as long as I can thank you all for your support it has helped me a lot I am just starting to get my head around it all and I can carry on like I was a week ago just some times the crying hits me

  • Since my diagnosis 3 years ago I've left my job and set up my own business. Work long hours about 60 a week, just keep going if you can. You wont have time to worry about pbc!!

  • My husband and I have run our own business for the past 20 years. After my diagnosis in May, 2014, we had to make some difficult choices, but I have learned a better pace now than the 50-60 hours a week I used to follow with our business.

    I still work 8-9 hours a day, but I break it up with 1 hour rest after 5 hours, then keep going for another 3-4 hours depending on the day. Since I work at home, I can control my schedule and pace; sometimes it is hard to stop though when I am in the middle of a task for the business. My husband handles schedules and business details as well as the laundry, shopping, and meal preparation. We both work at housework as we can, but often choose to rest over a cleaner home since we both struggle with health issues.

    I have more responsibilities during the day but have a chance to rest in the evening while he has a less to do during the day and more evening tasks. I encourage you to find what works for you.

    My husband also has health difficulties so our life is a balancing act of who feels well enough to handle what needs to be done at the time. I am blessed to have his support and thankful we can share the difficulties as well as the successes of life together. We are both grateful for good days when they come and just get through the more difficult days as best we can knowing these are the ups and downs of our life together now.

  • Like many people here, I continue to work full time...I'm a single parent, so I have no choice. I was diagnosed a year ago, though I never did check the stage I'm at. I constantly battle tiredness, but most of us have to work...tired or not. The only option in the US is our disability system which only pays a fraction of what you are use to making. Not to mention, you can't earn over a certain level (near poverty) for the months leading up to your application because they will come back and say, you make too much. They prefer you be out of work and unable to work, per a doctor for several months before applying. Lol. I have groceries to buy and bills to pay. I can stop working for a few months.

  • Yes, like many, I work full time, quite long hours. Love it.

  • Hi, Firstly you are not a pain. I was working doing a heavy manual work until within 12 hours of my transplant. After 12 months I went back to work doing the same work. After 15 months I decided to retire. What It depends on is your type of work, stay stress free and in general do as your doctor says and it should be ok. But please remember illness affects people differently.

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