look so well

How many other members Family, Friends,ETC find it hard to believe there is anything wrong with you when you know you feel dreadfull.

[Cristina_Romania]

You don't see electricity, but that argument does not make it not existing. Those who want to understand will do so, with not too many arguments and medical tests to prove your condition. Those who don't... bless them.

Maybe this is a way to handle this too...

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Thankyou Christina its just very frustrating at times.And when i have my bad days i just need to sleep and everthing that needs doing is still there when i resurface x

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i know exactly how you feel people say I look well but inside Im so tired I can hardly remember my own name. I think colleges at work don't really understand so I try to carry on as normal just in case they think I'm not pulling my weight. I try to fight the fatique I don,t want to give in to it but its so hard. Never mind at least I look well......

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Sophie9, I know exactly what you mean regarding pulling your weight, I do compressed hours working full time over 4 days, up at 5.15 in work for 7.0 leave work at 5.0 home at 6.0 bed at 7 lights out at 8.0 -9.0 depending how I feel, when Friday comes along I'm fit for nothing, spend the week end recovering ready for the same again come Monday, but I look well"...... Must be more to life than this?..

[Hidden in reply to Hidden]

Dinny

You have just described my life too. I think only other people with PBC really understand. I don't want to feel this way. Theres so many things I would like to do but work and sleep is all I can do. Its so frustrating. Take care

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Woodbine, you got it -- i still, after 7 yrs of knowing about this PBC, have a couple people that just don't get it -- but those that truly care, they do. - and those that KNOW me, they do to -- i ended up emailing URLS to people, or printing up PBC info and sending the ppwk to them --

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Thank

you to you all for your answers it is so comforting to hear that i am not on my own. I am recently diagnosed after many times of visiting doctors . eventually being sent to a liver consultant. I have 6 beautiful grandchildren and i try and save my energy for them,as its them who keep me going I work part time now but cant give my all in those hours just hope i can continue. Take Care everyone and Thank you once again.

[Jtxx in reply to Hidden]

I only work 2 days (Thu & Fri - 9hour shifts each day) and when I got home at 5.45pm on Thur I went straight to bed and by 6pm I was sound and that was me till 6am the next morning. When I told some of the girls in work about it they could not believe it. I agree with all of you that it is frustrating when you look so well but nobody knows what goes on when you get home and how you cope so that you can go to work. I am managing ok and will continue to try and rest when and if I need to. I am so lucky that I have a really understanding husband and family. I think it helps that my mother had PBC so they have all gone through this before and have experienced someone with the condtition.

Even when I think about it now, I was not in the house when my mother was diagnosed so I did not really see the FULL effect it had on her. Mum, I fully understand now! x

[exy21]

There should be a like button here. I am always getting the "but you look so well" as if by saying it I'm lying or I'm not ill. Does get frustrating. Lost alot of " friends" along the way, thinking I'm lazy( tiredness) and lying. Even now some family still don't get what pbc is all about.