So this is all new!

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.

4 Replies

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  • You'll find plenty of help and support here. I hope things keep getting better and better for you x

  • Good for you, you go girl!!!

    I wish a bit of slap would do that for me but I think I'm a bit past it..I'm 52

  • Lol the right slap will make everyone look fine :-) 52 is no age.

    I pull on my glad rags on a weekend and head out with the girlies every few weeks and have a blast, let me hair down and stick my middle finger up to all that try's to take over my life :-) I am the master of my destiny. I now see PBC as one more thing to live alongside of rather than letting it define me it is just a small part of me :-)

  • So this week is a pretty pants week, I have flu like symptoms that won't shift, head throbs and I am soooooo tired.

    Working full time with this is no fun, but I keep my positive mantra up! I can do this! (said rather tongue in cheek today considering how rubbish I feel)

    I am wondering if anyone else has strange things happen when they are run down. My stress, health manifests itself in or around my eyes, I am sporting a rather fetching swollen, red eye, which often happens when I am all strung up. It looks like I have gone 10 rounds with Tyson, which often raises eye brows at work! if I still had a husband I am sure they would think I had been given a slap.

    Talking about husbands, my soon to be ex husband has been rearing his vile little head. He always manages to find a way to dig the knife in. All because he has no control of me now, he tells everyone that I am ill and he wants to still support me but behind the scenes he just increases my stress making me feel even more rubbish, I just don't get why people have to do things that make us feel even crappier than we already are.

    So my rant for the week is over, hopefully this thing will shake quickly, but every little thing seems to hang on to me these days :-(

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