Has anyone had to take early retirement from work due to the fatigue with PBC ?

[fudge13]

I work 3 days a week and am finding it increasingly difficult to continue

[mtrafter]

At 65 I was working as a manager of an Aged Care Facility and planned to work a few more years but found the 4 days a week too much. The fatigue and brain fog were affecting my ability to carry out my responsibilities in a satisfactory manner. I retired and have not looked back.

[fudge13 in reply to mtrafter]

Thank you for your reply, I am 52 and can retire from my work at 55, but I’m just not sure I can survive that long 😕

[AM2016]

I had to stop working five years ago at the age of 41, a few months after I became unwell with PBC. The profound fatigue, body aches and brain fog all became impossible to manage whilst trying to work, even from home. I was virtually bed-bound for three months after I stopped work trying to recuperate from the impact of working. Now that I no longer work I am able to sleep during the day and manage my energy, but it is still hard. No pension, I claim ESA.

[fudge13 in reply to AM2016]

Thank you for your reply. I am only 52, I can retire at 55, but just not sue if I can survive the last few years. 😕

[AM2016 in reply to fudge13]

Maybe you should contact your union and find out what your rights would be about retiring early due to ill health? You would need the support of your consultant/GP to describe the impact of PBC on your health and your life, as the weird thing about this disease is how it affects everyone differently and it's about the severe impact of symptoms not the numbers on your blood tests.

[fudge13 in reply to AM2016]

Thank you, yes I have been thinking about doing this. My problem is my GP won’t have much on their records as over the years I’ve just tended to put up with things . To work my 3 days I have to sleep on my days off to recharge my batteries, but whenever I’ve told them I’m exhausted I don’t think they’ve listened that much. I’ll have a chat with my Drs . Thank you for your advice

[HermansMom in reply to fudge13]

I've been on sick leave and suspect I will not be able to return to work. I'm 54 and can retire without penalty in a year. I thought of retiring, but was advised to stay on sick leave (higher income, better benefits, etc) for as long as the employer's long term disability insurer will support my claim (possible up to 65).

[fudge13 in reply to HermansMom]

That’s useful information, thank you

[liver-bird]

Yes I was working full time in NHS and felt very tired so I retired in 2012. I was diagnosed with PBC in 2014 and with coeliac disease in 2016. Now my time is my own I can pace myself and am reasonably well 😊

[fudge13 in reply to liver-bird]

Thank you for your reply. I am 52 and can retire at 55, I’m not sure if I can survive till then. I work for the nhs too. I’m not sure if I would be able to retire on the grounds of ill health. Have you any knowledge of this?

[Worky888]

Worked for nhs. Retired off at 43 due to the pbc and awaiting tx. It was exhausting. And while my managers and direct colleagues were very supportive, HR were a different story, but we’re just numbers to them.

I retired on the lower tier early pension.

For me I just couldn’t do it anymore, I was listed and had pushed through for 2 years previous.

[fudge13 in reply to Worky888]

Thank you for your reply. Yes it is very difficult working in the Nhs, especially at this time. I’m really struggling at the moment as I can go all day without a break and often work over my contracted hours. I’m so exhausted, some days I just go straight to bed when I get home and sleep right through till the next morning. I need to look into taking early retirement, but I just don’t know if I can afford it. 😕

[janine541]

I'm 48 and some days could stay in bed all day but I'm afraid it dont pay the Bill'sTryed to get help in the past.

I work 3 days like yourself but find it really hard x

[fudge13 in reply to janine541]

It is hard, take care

[Lucky4]

I had to leave work at age 54 as I was too tired. I'd fall asleep at break time, lunch hour, etc. and due to the fatigue, I knew it was having a negative impact on my work. Applied for LTD, rejected then my union helped and I got on it.

I had planned to work until 65 but I just couldn't do it and it was obvious to my colleagues that I wasn't up to it. During this time I'd also had major surgeries and other health issues so that compounded the issue.

I personally found there was nothing I could do to battle the extreme fatigue and ultimately, with good doctor letters, the LTD was based on that. PBC is very debilitating for many and it doesn't matter what stage you're at. I would have been around stage 1 but it hit me like a ton of bricks.

Sorry to hear you're going through it; it's so hard when your body doesn't do or isn't capable of doing what you want it to do.

[fudge13 in reply to Lucky4]

Thank you for your reply. Sorry to hear what you have been going through. The fatigue that many of us experiencing is so debilitating and it is difficult for others to understand. I am going to speak to my manager and occupational health and see if I can take on another role with less stress, which might help me continue for 2 more years until I can take early retirement. I get so frustrated with the fatigue because I want to be able to do much more than I am able to.

Best wishes,

[Lucky4 in reply to fudge13]

I did literature research as did my GP's son (was in medical school). What helped me was finding information that said that fatigue does not correlate with the stage of illness. My GI specialist was also very supportive. I'm in Canada so didn't need to worry about loss of healthcare, which is great. Also, where I worked, clinical management of people with psychiatric illness, it's very high stress. Concentration, ability to tolerate stress, memory, all are affected by the fatigue and it's not a pretty picture.

Initially, I changed it so I was working 4 days a week then, as I function better in the morning, changed my work hours to earlier in the day so I could leave earlier (though would stay until the usual end of the day if there was an emergency happening). I don't know if your job has a duty of accommodation but that got me working an extra two years until I just couldn't any more.

All the best. It can be very debilitating and still is for me. However, you know you're not at your best when you get called to see a client when you're sleeping on the couch in the staff room ; it's time to go.

[fudge13 in reply to Lucky4]

Thank you for your reply. I’m glad that you had good support from your doctors. I am planning to have a discussion with my manager to see if there’s anything else I can do within my job that will be less stressful.

I have a very stressful job and it is becoming more difficult to think quickly . I’m hoping that I might be able to change my role slightly to help things.

Best wishes, Fiona

[Lucky4 in reply to fudge13]

I hope so too. I hope you have a flexible manager so they can accommodate you.

[fudge13 in reply to Lucky4]

Thank you 🤞 Best wishes to you x