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PBC Foundation
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Pbc/Aih

Well been for a walk today and feel absoulty worn out. Not sure any body understands how tired and poorly i feel.

At work for a few hours now.

Have pain in one of my legs. Tried to tell my doctor how i feel and he simply says its pbc.

Anyone else the same after a walk and picnic

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Yes me too, I did 5 miles this morning and although I'm always pleased to have done it I'm usually wiped out for a few hours afterwards. I need to sit/lay quietly until energy is restored. My husband says I look grey but it passes.

Some days I feel 'poor me, why me' other days I want to fight it and try my best to ignore the tiredness and itching etc. Good days, bad days I suppose but I know it could be a lot worse.

Hope you soon feel better xx

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Aww thank you. I agree with good and bad . Can i ask do you get irretiable with others

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I've seen that "grey look" after I work! I feel awful....wipes me out...

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Hello Janine, yes I feel very like you, I have to constantly think about how much I do, it's very frustrating even small tasks are requiring effort things other people don't even think about.Other people don't understand and say they feel tired too (this makes me feel like screaming with frustration)When I was first ill I remember thinking I'm 40 but I feel like I'm 90!!

I took part in a trial in Newcastle for a treatment rituximab but although other people felt it helped I think I had the placebo as I remained the same,I really hope the doctors find something to help this symptom and the liver damage soon.I used to feel guilty about all the tiredness and not being to do things but over time I've decided I can't fight it so I do what I can and try to use my energy on things I enjoy but it remains a hard and frustrating thing everyday.Let's hope things get better for everyone soon,and that the trial I was in will lead to improved treatments soon.

Jane

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I really hope so and thank you for your reply x

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Hi janine541, I absolutely understand how you feeling, I'm the same. I have to summon up all my energy to do chosen things, although there are times when I have to cancel special days when a bad day takes my feet from under me! My beautiful brave daughter lost her firstborn baby in Oct last year, due to hosp blunders (coroner and police involved), so I'm supporting her thro this devastating time - it takes every ounce of energy I have to travel an hour to her to spend the day with her. Then a couple of days sleeping to get back to my new normal, but I don't matter when my daughter needs me. I wish there was a treatment for the tiredness, it's ruined my life. I've had to give up work, return my beloved rescue dog to the dogs home, no social life, and I'm having to sell my happy home to move nearer my daughter, as this illness ain't going to get any better. So, janine541, I'm with you and understand completely! X

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Hi annieco

my heart goes out to you and your daughter, such a dreadful time and what would seem dire circumstances. Positive thoughts being send across the ether to you both.

best wishes

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My goodness i feel for your poor daughter. And it must be so hard for all of you xx

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Hi janine541

I do walk as it is supposed to energise us but I usually end up sitting or laying down to gather my resources directly afterwards. Never had a picnic at the end of the walk though! something to think about :-)

best wishes

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Thank you butterflyEi, I do try and be positive every day, as I say, there's always someone out there worse off than me :-)

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