I am new to the PBC foundation website so thought I would share a little about myself on here.
I am 41 and was diagnosed in 2011, after being treated for a few years with arthritis (without xrays). I guess you could say I am one of the lucky ones, at this time my liver is tip top(for now), not even any fatty deposits, I have a little damage to bile ducts though and seretologically the disease is showing signs of progression.
The killer for me is the exhaustion, after a couple of years of being told, get grip man we all get tired! they find I have fatigue. I still actually work 35 hours a week but work for an amazing employer that allows me to work flexibly and at home when I am not out and about visitng client. I find concentrating some days really hard but on those days I just shut the latop, go to sleep and work later in the day or in an evening. I am lucky that my children are older (25&19) so I don't have to worry so much about being perky for them and they know all about PBC, I made sure they were fully aware when I was diagnosed.
I guess the worst bit for me is trying to explain to people that my plumbing to my liver isnt so great and that I have liver disease that is not caused by alcohol and that in fact I am not even a drinker (always get them raised eyebrows). I think because people can't see it or touch it then it just isnt really to them. Outwardly once I have my slap on I look pretty ok and I am great at slapping a smile on my face and doing the "yeah am great" that I am pretty sure everyone else does. My biggest problem is the need to make other people feel ok, so I tend not to let them know that things are bad on any given day. I tend to try to keep working through things on my own.
I recently seperated from my husband of 20 years because after being diagnosed I decided to look at every aspect of my life and what changes I wanted to make, I realised that he was actually making me feel worse. He would constantly put me down and tell me I can't manage things, he seemed to enjoy my ill health more than is normal! Well you know what I have found that I can do far more than anyone, particulary my husband would give me credit for. Simple things like cutting the grass were banned to me as it was too exhausting. Well now I make that decision, yeah it exhausts me but I feel so satisified when I have done it for myself (even though I need to sleep after lol).
My new life moto is if it doesn't make me happy then am just not doing it! no one can make me, no one can stop me and no one can put me down anymore.