are people with pbc able to work full time? - PBC Foundation
are people with pbc able to work full time?
Of course,I work 4 days a week, am lucky in that regards. i get tired so have adjusted life to rest when i get home.The nausea and pains and aches are all part and parcel. I am the main breadwinner in the family so have no choice.You will find most PBC people live a very normal life, with a few changes here and there to cope with the ups and downs. Most peopel would recommend to keep as active and positive as you can,just listen to your body.
You have to learn to adapt, it won't happen over night, just give yourself time and listen to your body. Try and have a nap when the children do and try not to over do things like trying to get all your cleaning done at one time etc space your chores out.
When i was first diagnosed with liver problems I worked nights (as a nurse) and had very young children. I tried to find work on days as nights were dreadful for me - huge fatigue, brain fog, joint pains. When my dad died I paid off the mortgage, and resigned! I found work with a charity, (no nights but some travel - and I needed to pace myself on that - and I still struggled with evening work and full days). i had to stop a couple of years ago due to unsupportive colleagues/bullies basically, and I got very very depressed. In theory the work could have been done more flexibly. But the poor pay and bullying were against me continuing.
I'm now thinking of going back to care work (no longer registered), thinking of trying maybe 3 late shifts a week (my joints tend to be worse early in day, and if i rest in the morning I may cope okay, i hope), not on consecutive days to give me recovery time, also (fingers crossed) it may give me time and energy and reduce brain fog enough, so i can study and get reregistered. That's the view on an optimisitic day; other days I think I'm on scrapheap employment-wise. Initially I hope to find agency work, so I can pick and choose and do a bit of trial and error.
That's my tale. i think so much depends on having flexible and supportive colleagues and bosses, on your domestic circs (my children are older, but two have additional support needs, but, to balance that, their dad is approaching retirement and does more housework!!), on how your week is distributed. eg I know if I have a busy day, at work or otherwise, I couldn't have an evening out, so i'd have to work around that. It does take time.
Also the conditions under autoimmune liver disease umbrella do change over time, so flare ups, medication, etc will change how you feel.And of course remissions do happen too :-). I also think how you feel mentally can change over the years. When i was dx, a decade or so ago, I found it very hard to work with people with end-stage liver disease, and had to ask to be moved to more less stressful area. Now, if I am up to it physically, i think I'd be much more robust mentally and able to give good dispassionate care, despite the fact my own disease has progressed.
In the UK too, your condition is supported by legislation, so you can ask for flexibility of sorts. I also know I am lucky in having no mortgage, though some days I'd like to leave my husband and would then need to pay rent :-(.
Sorry, my last post reads like a job applic./personal statement. I think i'm trying to convince myself ....
Dear Witchiegirl, don't worry, i think it's great, that You wrote about Yourself a little more. It's very important to have an opportunity to tell about Your feelings and thought, and surrounders are seldom good listener. And also why not convince Yourself? It is great, that You became stronger and can help others, but I also understand, that first You couldn't work with liver patients. Your last sentence touched me deeply, I have similer thoughts. For You it's heavier, as You have children at home. I'll try not to expect anything, but also not to give anything... just now I realised, that as it happened (after long work) that emotionally I'm quite independent from PBC, it's prognose, I have to work for a similar emotional independence from my partner. He is not bad, just not showing any feelings, wish to be with me, understanding. He is lately getting older, loosing his hair, weakaning his position... but I think, that now I have not to understand him, just I have to work on my own way. Be well!
Hi Jess1990, I work full time and also struggle with joint pains especially in my wrist, and driving for a living doesn't help.
I have been so bad this week that I actually took 2 days off (which I never do) but the pain in my wrists was bad that I felt it was un save to drive, but whilst I was at home all I did was cry, sleep and feel sorry for myself, it just wasn't me. So I decided to go back into work which made me feel better.
I also have a little girl, she is 3 and I love her so much, it hurts when I can't pick her up or cuddle her cos the pain is to much, but at least I have her, plus I don't always feel like that.
I think sometimes work can help.
Take care xx
Hi Jess1990, I too work full-time and currently supervise seven support staff, two are 70 miles away and one is 140 miles away from my office. I do travel once a week, and I am also the mother of a 14 year old who keeps me busy and three dogs. My husband travels a few days out of the week as well, so I have to pretty much take care of everyday chores on my own when he is gone. I also have my bad days, struggle with fatigue pretty bad, joint paints as well and severe burning, which can't figure why. I suffer from memory fog and notice all these occurr more often when stressed. I have been taking off from work, one and sometimes two days due to these symptoms occuring more often. But, once I stay home, I really stay home, and do nothing. I call it my "TIME OUT MOMENT." I sit home and rest and absolutely do nothing from the time I drop my son off at school until one hour before I pick him up. I don't answer any of my phones, which I have three, no emails, no texting. I don't answer the door, or clean house, don't do dishes, no vacuuming, no laundry, just lay there and REST! This seems to recharge my batteries back and then I jump in the shower and enjoy a good salad and tea/no sugar and feel so much better. I think we have to keep going, we can't stop and feel sorry for ouselves, we can take time to take care of one self but don't let it get you down. This diesease will eat you up with worries and stress if you let it. So take care of yourself, and sometimes work will keep your mind off of any worries. But, remember it's good to take a TIME OUT!
I work full time.. Plus i go jogging this it not going to beat me
I eased off a little after diagnosis last May, really because I could and I was getting used to meds etc. Started new job in January, full time, lots of travelling, new start one and have never felt better. The meds and my new lifestyle regime are obviously helping but for me at the moment it really helps to keep busy.
Yes but I think this a bit of a grey area.
I speak from experience. Back in early 2010 I was working flat out full-time in a managerial post. I'd be thinking about ideas for shop displays, etc and other problems when not at work as I was in a small (chain run) shop that opened Mon-Sat. Hardly got 2 days off in a row in the 6 months of 2010 and I started itching Feb 2010.
I was feeling so tired at the same time and ended up seeing a GP March 2010. Whilst ongoing tests were being done (usually blood work but also I went for a scan), I struggled along and would come home at night shattered after being out the house from around 8a.m. and not getting home until 6-.30p.m., sometimes 7p.m. with not much to eat throughout the day and then flopping on the sofa and nodding off in a deep sleep so no evening meal.
By the time I managed to get 10 days off for a holiday (July 2010) I was pretty much exhausted to fully enjoy it. Whilst there and with the itching ongoing and me sleeping a lot plus ongoing medical tests, my husband had decided it would be best for me to finish. The job wasn't enjoyable (I'd only started the job July 2009) and we were rarely seeing each other as he had a demanding job also. So I quit on my return and worked a months notice. I went back into voluntary work I used to squeeze in between part-time work prior to the full-time manager's post and slowly I started on the mend.
I do feel that I might just put myself back now if I was to go back into full-time work again but I'd take up part-time again. I did come to regret leaving a part-time job elsewhere to take up the full-time job but some things you never know until you give them a go as I say. I am planning on returning out there to part-time work as I do like being busy and I do think that with PBC if possible it is a good thing to keep active. I find that when I sit for periods of time in the day I can start to feel the prickles of the itch. Meanwhile I will just continue in the voluntary work I have done for years. In that I'm on my feet for 4hrs a day and have to say I do not feel like I have PBC at all.
yes of course you can
I work full time, but as I am in education, I get a holiday every 6 or so weeks. I dont think I would be able to do a job with only 4 or 5 weeks holiday per year. We are all different and many people with PBC have additional autoimmune conditions .... it really depends on the individual and how PBC affects them. Not everyone has all the symptons and even to the same degree. I try to get in an hours walking daily too as it seems to help me personally. Days when I just laze about at home, I find that as the day goes on the more tired I get, so different things work for different people. I am better off being active, but need a regular break.
hi Jess1990 i also work full time but am in a desk based role, although a do drive to other offices a few times a month. So much of coping with the PBC and connected conditions is mind over matter. Eat well, exercise as much as you can(walking), find the simpler things in life to keep you smiling.
Thanks for everyone response its good to know how other people are managing with pbc I think it must vary on the progression and symptoms. Such good support on here.
Hi Jess
As many have said it differs from person to person. I have been working 50/60 hrs a week, mostly desk based, out of need for the charity I work for. However it really has taken its toll and most days I can only work and do nothing else. I do have other auto immune conditions so that makes it all worse. I had bad news on last hosp visit with liver showing early fibrosis
and believe some of it was down to not giving my liver, joints etc a chance to rest.
I have 3 children, I am a carer for my special needs son. I have not gone back to work since I had child no. 2. I have tried to get DLA for myself with no luck. I suffer from the fatigue, itch and muscle/bone pain.
I agree with what others have said - it is down to you to decide what you can and can't do. You have to remember that a lot of people have no symptoms at all, some have minor symptoms and others have very severe symptoms. It seems to be a very individual disease.
I have been off sick for just over a year - though I was only diagnosed about 6 months ago. I got to the point where I couldnt function at all. I couldn't concentrate on or remember anything and the tiredness was crippling. it had been going on for about 4 months before I had to admit defeat. I was managing a service for vulnerable people and managing quite a large team. I was probably the biggest risk in the place at the time i went off sick.
It was a big admission for me. I've been in work for most of the past 32 years and until last year, the only time i ever had a sick note was when I had anemia. Again, I had struggled on as long as I could, went to the doc and ended up in hospital.
Even after a year off, the tiredness and concentration problems haven't eased a all. I really struggle with day to day things. I can't read for more than a few minutes without losing the thread of what I am reading. If I am busy at all, I feel utterly drained afterwards. My social life is limited to say the least. I sleep a lot during the day (though I think I have noticed that I am sleeping a little less). I can cope with the itching, the sore joints and bones, the occasional stomach/ bowel problems. The tiredness and the screwed up brain however are beyond me. If I can pace myself, i am mostly great. If however I have to do things when I am already tired I am hopeless. I try to keep some kind of a routine - and I find that helps. I sleep at the same time every night, get up at the same time every morning, eat regularly, walk a bit, sort my kids out. Sometimes it all goes pear shaped but thats ok! The world does not come to an end if routines get scuppered.
My work would not agree to any adjustments to hours or duties and in order to keep my job I had to agree to go on long term sick for another year or come back to work immediately on full hours and duties. I knew that I wouldn't be able to do the job properly so the long term sick was my best option.
I am glad that my job is safe (so far) but the prospect of a year off doesn't really make me happy.
In spite of all the best efforts of the docs to convince me it is 'all in my head', I know my limits. It's funny, all the advice is 'listen to your body' - then when you listen to your body, it's all in your head! Go figure!
that all seems a bit whiny and moany - i am sorry. That's not my usual style - I think I am having a contemplative day 
Hello all.i have had pbc now 3 years.i work full time as a dental nurse. I have noticed i have painful joints and an achy body every day ,it feels like flu symptom. iam tired all the time and i m in pain so much i tend to cry. I so want to go part time in my job but a bit worried as iam single woman and worry about my financial problems .I honestly thought i was the only one in pain.When i sit for awhile,i cannot get up as iam stiff and joints are achy..I may go part time though will see how iam next week.
I also work full time I manage 2 Dental Practices I have to drive an 1/12 hours everyday and I work 40-50 hours a week. I must admit I am finding it a bit of a struggle of late!
I was diagnosed in October last year so far I have only had one day when I just couldnt get out of bed.
My biggest moan is tiredness and the pains, and at night the itching!!
But be positive, you must not give up, dont let let it rule your life,Take Care
I was recently diagnosed (April '13) and for the past few years I've worked from my home office and in a difference city than my coworkers. (I see them 2x a year). My job is full time (40+ hours a week), and includes a heavy travel schedule, for which I check into hotels and go directly to bed to sleep while away from my family. At home, I often take a nap and recharge because of fatigue (before dxs, I thought it was just my age.) I'm thankful my co-workers have not witnessed my 'slow down', though I work extra hard to complete my work and deal with the brain fog. My position is not long-term, but based on a contract (typically 6 months to a year each time) for projects. I fear telling my co-workers / company about my disease could result in a future release. As the primary financial provider in our household, I feel the desperate need to keep my paycheck, health benefits and this job in order to make a good life for my family. Both kids are under 10 and we have a ways to go before they can be on their own. I worry what the future may hold if I can't work and my family has to care for me.
I have suffered with pbc for abt 20 years and used to work full time , I am now 69 and retired, I don't have any symptoms, guess im lucky.
At the moment I am working 25 hours a week but feel I just not sleeping properly and is effecting my work performance.
Still working 40 hrs a week & going strong. Fortunately I’ve not had fatigue or itch so far. 😊
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