hi
I’am just wondering if anyone has retired early due to the extreme fatigue and brain fog caused by pbc. I am a practice nurse and I’am 63 I feel that as the day goes by I’am so fatigued I cannot think straight. I don’t feel I can continue in this demanding role because I am bothered about making a mistake xx
This can surely be a reality check for us, can't it? As a nurse working 12 hour shifts I eventually ended up working 8 hour - then 4 hour shifts. I did have a candid conversation with my boss at the time. Perhaps a good place to start.... One question is how retiring early would impact you financially.
Hi
Yes I would loose out financially but I’am not only fighting the battle with chronic fatigue I also have chronic itching which can wake me at night. I also have a husband who keeps falling and ends up being hospitalised so I’am a carer for him I’am physically and mentally exhausted. My quality of life is impacted at all ends xxx
I posted a few hours ago from information about obtaining disability due to PBC. Hope you see it..... again contact The PBC Foundation for any more information they will have.
Hello, I'm going to be 59 in a couple of more months. I am currently on disability leave from my work at hospital where I'm an Accounting specialist over 26 years. I've been of work since January 2024 due to my terrible fatigue, brain fog, arthritis and the severe itching that interferes to point where I take children's liquid benadryl the past several years just to get rest. My story is long I was diagnosed 2016 after 2 liver biopsies. I take Ursodiol 600mg per day and it's been a journey. Good luck, I'm praying for blessings🙏 LIVE LOVE LAUGH
Hi
Thank you for your reply i feel between a rock and a hard place at the moment, i have the concerns of my husbands health and my own as i said mentally I’am suffering as well as physically i cannot go on like this as its not fair to myself and my work colleagues i need advice on whether i can retire from my job as a practice nurse due to ill health xxxx
I totally understand and there's no way I can continue to work. I too worry about my spouse's health. I'm seeing a counselor twice a month to help with the anxiety and stress of this disease. Not fun but keeping the faith~Wish you luck and you can try applying for early Social Security if Dr will help you which is my next step. They make it hard if you're not 65 or 67 age to fully retire :/
Can you make an appointment to see a financial advisor? They can look at the financial situation and make some recommendations. There are law firms that just deal with disability issues... is that a possibility? I think you need sound advice from professionals who know about these situations. Sounds like you are being pulled in many directions - at your health's expense. You can also call The PBC Foundation for their helpline.
+44(0)131 556 6811
Hi there I’m a community mental health nurse and I also become very fatigued particularly in the afternoons. I was able to retire and return to my own post three days a week. I now get a pension and salary which is great. I still do get very tired but knowing I have four days off every week makes such a difference. Is this a possibility for you? Maybe discuss with occ health too.
Luckily I don’t itch but I really feel for you and I really hope you can negotiate with your manager on this one. We can only look after others when we are able to look after ourselves.
Are you from whitehaven area
Hi no I’am from the Barrow area x
Hi, I decided to retire 2 years ago because of the fatigue and brain fog. I was only able to do it because my Mum had died of PBC and left me and my brother her house. It’s a gamble because that money won’t last until my pension kicks in and my pension will be reduced but I didn’t feel I could carry on.
I’ve since taken a 6 month contract for 16 hours per week which I enjoyed and could manage physically.
I would recommend talking to your trade union about options that might be available.
If you feel too ill to work, talk to your GP and get signed off sick. This will give you the time and head space to investigate your options. It will also give you pension contributions for a bit longer.
Apply for PIP to help you financially. Citizens Advice can help with this. If you get it before state pension age it continues into retirement.
Ask CA about other benefits you may qualify for if you retire including carers allowance for your husband. There are tools you can use to test different scenarios and what you could get.
Ask for an occupational health assessment because they may come up with reasonable adjustments you could request which might enable you to keep working if you want to.
Good advice already given to take financial advice before making any decisions.
Hi there are you from whitehaven
Hi
I have not worked for all most a year, for the same reason, I was also diagnosed in October with IPF and I decided enough is enough, but unfortunately I can't live on my pension so I am going back to work , so I can pay my bills 😫
Hi, I was wondering if you could talk to your Human Resource department about reasonable adjustments to accommodate your situation as PBC would come under the The Equality Act. You could talk to your union or Citizens Advice first.
“The Equality Act is the law that says when people and organisations have to make changes so disabled people aren't disadvantaged. It calls this 'the duty to make reasonable adjustments'. To see if you can take action, you should check if the person you asked has a duty to make reasonable adjustments for you.” Citizens Advice
I changed how I was working in order to manage my unpredictable PBC symptoms.
I wish you well.
(Sorry , just saw this was mentioned above)
I went from serving 12+ hours a day from 22-31 to working in a school 29 hours a week. To the demands for that job being to hard to handle with the fogginess. I would get overwhelmed very easily and it physically started making me sicker as well. Waiting for disability now at 36 years old at Cirrhosis stage with portal hypertension and many other symptoms from meds I deal with in a daily basis. Praying for you Cumbria7 . I could not imagine the work on your feet all day long and paperwork. Prayers for you!
Thank you so much for your reply it sounds as if you are having it really rough. I took the decision to retire early and feel as if a weight has been lifted from me. Of course we will miss the money but decided my health comes first and therefore will have to live accordingly, At the moment I’am trying to get on top of the severe itch which is keeping me awake at night. But recently started rifampicin, which has not quite cured the itch but it’s getting there. Have little motivation in doing things as still so tired. But it seems as if you have lots to contend with sending thoughts, hugs and prayers to you xx
So fed up of feeling ill
Early pbc
medical retirement
Long time off of here due to life lol.
Paracetamol with pbc 
