Anxious about pbc

[Lisa30]

I got diagnosed with pbc in October 2011. I have been taking urso twice a day and my lft's are improving. I also have a heitus hernia which seems to be common with pbc. I get tired easily at times and struggle to get going in the morning, but i have a toddler that keeps me very busy and work part time. I have recently read quite a few stories on here were people are really rather unwell, which has sacred me. I try and forget about my pbc and live my life as normal. I wondered if there way anyone else with pbc that lives a good life bye has a fairly positive story?

[Cristina_Romania]

There are MANY positive stories Lisa. Contact the PBC Foundation, it will help tremendoulsy :). Be well!

[Jtxx]

Hi Lisa 30. I don't have the itch most people talk about and feel blessed. I get tired but find the Urso helps. I also don't have cirrhosis and was diagnosed in the early stages of PBC last year. I work part time and in my spare time have a fairly normal life. A positive attitude is a great bonus and I refuse to be a victim. I deal with things when they happen. Good luck and keep well. X

[Jtxx]

Another thing is to just listen to your body. I find that helps me. X

[Hidden]

Hi Lisa, i was diagnosed with PBC in January 2010, I work full time, granted it is a desk job, but sometimes I feel I just want to curl up at my desk, I struggle through, I seem to just sleep and work, if I do anything that takes energy, I e housework, shopping, even when I go on holiday, the journey seems to be exhausting! I try to pace my self and listen to my body, I agree with Jtxx you must keep a positive attitude xx

[zipitydoo]

Hi,

I have read many emails about how well people are doing with PBC.

You have to remember that some people have other illnesses aswell as the PBC so its different for everyone and to make things even more complicated not every person with PBC suffers the same ways.

[JerseyChris]

Hi

I have been diagnosed for about 8 years and although have much fatigue etc I have a great life. I travel (with assistance), I excercise on the good days, I socialise and, although no longer working, I do as much charity eork as I can and sit on various committees. I just don't tie myself down to specific dates and times. Having PBC is a pain but work around it as much as poss and don't be too proud to take as much assistance as you need to have a happy life. By the way I also have a haetus hernia. Love your good days and enjoy your toddler. x

[Hidden]

Hello Lisa30. I was diagnosed with PBC Dec 2010 after 6mths of itching and a fatigued (I was workng 40+ hrs in a managerial position at the time. I didn't quit that job because of the pending PBC diagnose).

I'd always thought I had taken care of myself, eat the '5 a day', wholegrains, lots of walking and being active, at the time minimal drinking but then the itch....

Since diagnose and taking Urso of which I had a few temporary side-effects with them in the early days (heartburn and bloated feelings) I have found the frustration has been the itch. It's only almost 14mths on since starting Urso that I can confirm now the itch has quite subsided and this wk so far I've had another 3 nights of very little restlessness and the itch.

I continued to lead as much a normal life as I could after sort of accepting I had something that would never 'go away'.

Last year, my husband and I had 3 camping hoidays and a week in an apartment in Devon and regardless of the itch, it did not stop us going or doing anything that we would have done previously.

At present the only thing I have is abnormal LFTs due to PBC and I sincerely hope to continue to carry on with just this. It's only lately the dreaded P word (we call it 'The Pretty Bloody Crap Thing'!) has started to really diminish in day-to-day conversation so surely that is a better sign?

[Juamcc in reply to Hidden]

If you are compensated that is do not have physical outward symptoms of cirrhosis, you will live longer. No guarantee but that's what I read.

[janethomas Moderator]

Hi Lisa,

I was diagnosed in 1996 had a transplant in 2004. I take every day as it comes, I am constantly tired these days and if I want to lay down I do. I also look after my grandchildren up to 3 days a week sometimes but even though I am tired I still seem to manage to look after them I also do charity work and am on the committee of my church. I know I have PBC but dont really think about it too much. and just try to to do the best I can. I still do every day things like cooking cleaning but you learn to do it a different way to help with the energy levels. I would recomend if you can get to a PBC meeting you will meet others who have PBC and its a great way to talk to others and just be you. Even though I have had mine for over 16 years now I still find it hard to talk to my family about my PBC. You just learn to live woith it instead of it controlling you. Take Care

[lorac]

Hello Lisa

Iwas diagnosed in 2006 with PBC I was also diagnosed with Dysesthesia and Sore mouth syndrome after lots of tests.My Lft's are up and down so I take urso which helps I also have Amatryptaline for the Dysesthesia and find the affects of this maedication makes me even more tired. I seem to have flare ups when i get exausted so this is when i listen to my body and only do the essentials.

I work full time 40plus hours a week plus sleep overs hands on, I am also the Manager so have the stress of guiding a team of staff all of the paperwork etc my job is quite stressful as i work with Adults with Learning Dificuilties who have Autisim, Chalenging behavior and Mental Health. I am also a Mother of Two Boys have two german sheppard dogs who need lots of attention. I have a rule that everyone must work together so that all chores get done if im not well the shopping gets delivered and veryone knows how to use the washing machine, vacuum, iron etc.

I hope you find your momentum and your way of copeing with Pbc this way you can have as full a life as you are able dont feel guilty if you need to rest.

Iwish you well.

[Lisa30]

Hello all, thank you for responding to my question. Its been good to hear how positive you all are. I think the best advice i have taken is listen to your body, i tend not want to be beaten so fight on and then my tiredness is worse. This is still very new to me so i guess its learnign to make these changes and accepting help, another thing i am not very good at. Anyway since my last post i have decided onwards and upwards, i have therefore booked a family holiday, two weekends away with the girls, and arranging a big party for our anniversary. This summer is not going to be about hospitals its going to be about Our family and enjoyng our beautiful daughter who is incredible. I feel so lucky when i see her little smiling face every morning. Everyday she does something that amazes me. So heres hoping we all have a fabulous 2012 xx

[itchyandscratchy]

Sounds a fab plan Lisa!!

I believe that there is always an upside, and forcing me to stake stock of whats important in life and have fun is my upside to having PBC. we have just got back from a week at centre parcs where we recelerbrated christmas day, that included the tree, decorations, crackers, token presents, even turkey, sprouts and mulled wine! live life for the moment.x