Working whit diagnosed pbc

[marianne349]

I have a question ,did any one stopped working when the diagnose Pbc was staten

Because it was to heavy , I'm working in a nursing home and is a heavy Job

Marianne

[Shulsey]

I was diagnosed in 2012 & worked as a cosmetologist. I was in a salon & for a second income I done hair in a nursing home. I know what you mean when you say it's a heavy job. My fatigue got so bad & I also kept catching a "bug" here & there. But when I did get sick I would be down for days at a time. I had to stop doing hair at the nursing home & eventually I stopped doing hair all together because it was difficult to stand with many arms in the air & the pain in my hands were crazy. After hair I went back into the food industry working for our school corporation. I was preparing food for kids at our local high school. That was very demanding, fast paced, lots of lifting bending & so on. My hep Dr at Indiana University ended up putting me with a weight restriction of 25lbs due to having small varicies (im stage 4 now). He said that the lifting can cause my varicies to grow & bleed. I've already had three banding done on my varicies. I had to resign from that job also. I've lost my career & a job I loved & worked hard to get within 5 years. All I can say is work as long as you can handle it. Im now waiting on a answer for a disability claim. I cannot find work with a weight limit like that & all of my Dr appointments along with the regular procedures that I would need to take time off for. I hate this dreaded disease!!! It has taken a lot from my life, but I try to stay positive by remembering that my not working is giving me that extra time for my kids. I wish you well in your job & with your health.

Stay strong❣️

Shannon

[marianne349 in reply to Shulsey]

Thanks you for your answer I no now I 'm not standing allone in this situation!

[vicary in reply to Shulsey]

I totally get where yr coming from I too hate this condition ! , I always said I wouldn't let it rule my life , but I get so tired it's hard to fight it all the time . I am now down to working 2 days per wk and I'm still struggling, I work in a pharmacy so I'm on my feet all day and I'm totally exhausted my joints ache and my itching seems to step up a gear , I was lucky to be able to go down to 2 days as I qualified for the lowest payment of pip which helps my finances, but I worry how much longer I can keep it up it takes me 3 days to recover but wouldn't be able to cope financially if I didn't work but would give up tomorrow if I could as it takes everything I've got to do it then I got for nothing for days , I find people just don't get fatigue at all and lots roll there eyes , I would swap places with them anyday.

Take care .

[teddybear7]

I had a very intense job & struggled for 3 years. I now don't work it was all too much it was the fatigue. I was self employed. I've been looking at job adverts but don't feel able to commit as I feel I would not only struggle but be unreliable to any future employer. It's awful. I'm very lucky as financially I can manage. It's a good thing cause I would not pass any benefit tests for government benefits here in the UK they would think I'm ok to work. I hate hidden illnesses. X

[marianne349 in reply to teddybear7]

Hi ,

Today I go to See the doctor and found out the results of the biopsie test! Afterwards that I have to See the so Cold Bedrijf arts I dont no the name of it in english ,Its a dokter Who's is of the company I works for and she had to to look if I can work or not !I don't no how to explane it in English (sorry) So i'm nerveus about it ,I Am a widow and have to taken care of myself,but I think If I have to,I go an a Early pensioen, Here in Holland I have to work untill an age 67.5 .I Am 64 years old. Now I want to enyo life now ! When I heard of this disease even more ! Thanks for the answers Marianne

[Hidden]

I worked full time in healthcare until two years ago, but when the fatigue started to have an impact I was lucky I could reduce my hours. That allowed me to work on until I was 62.

Is there perhaps an opportunity for you to reduce your hours or maybe do a different role in the nursing home that is not quite so heavy. If you enjoy working as I did do look at all possibilities before giving up I found it very isolating initally.

Take care