Is there a help desk or something simular for parteners and family members of PBC sufferer's, for us to help and understand more?

[cigarboxman]

I need this help and I'm sure other 'carer's do to.

[Hidden]

Hello cigarboxman, well I presume you contacted via email or phone and became a member of PBC Foundation. They can offer advice.

Also there is LiverNorth which is based in Newcastle, they are also helpful I have found. They produce an online newsletter and you can read back issues too on there. There are also local groups and contacts for both LiverNorth and PBC Foundation if anyone needs to talk, support, etc.

I was diagnosed with PBC Dec 2010 and during that year I suffered quite badly with the itch and also was fatigued back then. I was working full-time and quite flat-out in retail and my husband didn't at the time take it that seriously. I just thought I was having a temporary blip (how I wish).

Seems that it can take a bit of time for someone who lives with someone with PBC (and any other long-term condition for that matter) to get really geared up and help when needed and to also help you continue to live your life as enjoyable as possible.

I am not disabled and can do for myself (I am quite indepedent anyway, was a widowed mother from 1993 until getting married again in 2009, yes hadn't been married a year before PBC surfaced) so I am not classed as needing a 'carer' and hope never to be (but you never know).

My husband is still getting used to a few things with this PBC. I have a lot of energy as fatigue left me long ago but I do get tired due to having broken nights of sleep due to the itch that I tend to get at night. This in turn can start to stun you a bit being tired later in the afternoon and the one thing about tiredness and also fatigue with PBC you never know when you will have that good day or that bad day. I find planning anything often goes a bit pear-shaped if I have not slept the previous night as it has then caught up with me.

I don't expect to be treated like I have something wrong with me as on the outside no-one would know I had PBC. My husband still goes about his business as usual and treats me as such though we have in the last 12mths taken the weekends that bit more sedate at times as I find I often need that extra hour in bed of a morning when I've no itch and it seems the only time that I can relax awhile. As more time passes you just get on with life and as I did at diagnose I decided to live life as my husband says that too, we must make the best of free time as we never know with PBC. Yeasrs down the line if I am still chugging along then it will have been a bonus thinking back on the great times.

[jane1964]

I don't know of a helpline,although there could be one.However there is a good article you will.find if you search "bmj fatigue in primary biliarry cirrhosis".I have pbc and got my husband to.read this, we both found it very helpful as it explains from a patient and a doctor's point of view how the condition can effect a person.I hope you find this helpful.

[cigarboxman]

Thankyou peridot and jane for your responce and imfo. cigarboxman.

[Hidden in reply to cigarboxman]

Out of interest I once read that article that jane1964 mentioned above and I am certain that it was the article that features Tilly from Liver North. I know I have contacted Liver North previously and she has been the person who has emailed me back twice and at the same time offered a telephone number if I want to actually speak to her personally.

[JennerLayne]

You can also visit pbcers.org/ for some great information!

[cigarboxman in reply to JennerLayne]

Thankyou Jenner. Graham.

[bink]

Hi Cigarboxman , I don't know if you have a Facebook Page but there are some awesome groups on there for information . I sent my mom to a site only for caregivers and she loves it and has learned so much . Hope this helps

[cigarboxman in reply to bink]

Thanks Bink, will checkout.