Hi i have not wrote anything on here before. But i could do with a bit of support no body in my family understand

I have two types of epilepsy and primary billary schirrocis of the liver and ashma and mechanical back pain i struggle everyday i try to hide a lot of my struggle when im exhausted in pain ache all over my muscles are pain full i just try to carryon but its getting really hard to i feel like screaming at my family no i am not alright i cant do the housework the running around anymore im so so exhausted please any ideas how i can make them understand

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  • Hi ,

    Sorry to hear you are in such distress, I don't have any suggestions on how to educate your family about your condition.

    I just wanted you to know, you are not alone and this forum is great for just going on to express your thoughts freely to people who are going through similar situations.

    I hope you work it out with your family and that you get some good days.

    Take care

    Angela xx

  • Hello mitchell007.

    I think a lot of us find that where fatigue is concerned others don't fully understand the issue that can come with it for someone with a liver problem. Anyone can say they are tired but with PBC it is a different type of tiredness, it comes all at once and really can knock you down. I did have fatigue back in 2010 but for me mine vanished at some point during 2011. I tend to suffer from the itch still at night and often it interrupts sleep so I start to feel tired come mid-afternoon.

    Why don't you request the free dvd from Liver North all about PBC and then let family members watch it at their own leisure? My husband wasn't so serious about it all in the early days of the road to PBC in 2010. (I started itching early 2010, was working long hours in a job you always seemed to take home with you and then I was having blood test after blood test before seeing a hospital doctor later that year who two months later informed me I had PBC.)

    I did request the dvd and I only watched part of it as I'd by the time I got it had read quite a lot via PBC Foundation site, Liver North too. (Both issue newsletters. Foundation now have online too, Liver North have their back issues online too>0

    I'll put the link on here for you. Best Wishes.

    livernorth.org.uk/pages/fac...

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