mrs Violet Keir

[mulberry]

Looking for some support as I have PBC and aged 76 Years. I live in Forfar near Dundee.

[DonnaBoll Administrator]

I am so glad you reached out for support. I'm almost your age...74. Not knowing where you are in your PBC journey, I hope your liver lab numbers are good. Is there anything in particular you are concerned about or upset about? I will be glad to help anyway I can.

I would strongly urge you to join The PBC Foundation there in the UK. It's free. They have so much support and education there. They even have 'chats' for support on Tuesdays, I believe. Go to their website and look around. They have so much to offer. pbcfoundation,org,uk

I hope to hear from you again soon. We all need a support system to get us through the tough times in our lives.

[DebatDG9]

Hi Violet

I’m afraid I won’t be able to offer you actual physical support as I’m in Stranraer - extreme south west of Scotland. It would appear we are few and far between here in Scotland. In 7 years I haven’t met anyone else face to face who has PBC . I hope you are more successful in finding someone to chat to over coffee & cake. If you ever find yourself in Galloway we always have cake in the tin. 💋

[Candy12]

Hello Violet,

I don’t live in Scotland but the people on here at HU for PBC are a friendly bunch and someone will always answer a fellow pBCer.

I thought I’d just add the link to the PBC foundation, they are based in Edinburgh, I would think they have volunteers across Scotland and they could maybe put you in touch with someone. So do give them a call.

pbcfoundation.org.uk/

[kingsnorth]

Hi Violet I’m 74 and live in Kent l was diagnosed in 2018 feel free to message me any time x

[mulberry in reply to kingsnorth]

Hi, I hope you are keeping well. I was diagnosed in 1994 in South Africa. They do not have Urso over there as PBC is very rare. You will be ok as long as you take your Urso. My brother lives in Canterbury and I lived in Nuneaton for 23 years. I need to eat healthy foods to survive especially fruit and veg. It all helps. I also drink plenty water. Look after yourself and take care. x

[kingsnorth in reply to mulberry]

I eat 90% Mediterranean diet l have eliminated highly processed food from my diet and cook from scratch. I have never been a drinker anyway so there was no need to cut down. Best wishes x

[MrsFlee]

Me too i live in Stirling 🙏🏼

[MrsFlee in reply to MrsFlee]

I was diagnosed 12/13 years ago but it took them 4 years to diagnosed. I had severe mental health problems. The medication was the target they thought. My Gp was the person who diagnosed me 🙏🏼🙏🏼

They would have had me in a mental health instutuon. I had alot of symptoms as pbc and mental health.

I havent ever meet anyone else with pbc and mental health. My saviour was Professor David Jones book that gave me a lifeline in how pbc affects me. Amazing i bought a copy for mental health dept. Its the worse disease to have all alone where bo one understands me. I always get to the point where i think YES i sm getting help

Then nothing comes. Not one person can speak up for me or my blackouts and falls i had and had no memory of them. Woke up black and blue had black eyes.

All in my head or crazy or lies or not understanding now totally alone. With my wee rescue dog called Wilma. We had no idea how she was age 3 when we got her. I struggle with her and i cant help but wonder if anyone out there is all alone.

Desperate for daylight been in the dark.

Hope i do get back on here soon. I forget to come back on. Evtremely tired sll the time. Stuck in my flat wilma gets into a bad state i live upstairs flat and my stairs are steep.

Its pointless to get into it all. Everything i touch hors wrong.

I can only try my best that i do get contact my downside i am extremely scared to leave the flat paranoid. All sorts.

🙏🏼🙏🏼🙏🏼

[Readlots in reply to MrsFlee]

I’m sorry to hear that you’re struggling on your own. There are several organisations that can help you with your furry friend - cinnamon Trust comes to mind but there are local ones too. Have you got support from carers? It sounds like you could do with someone popping in regularly. Your GP might be able to organise some help for you. Hang in there

[mulberry in reply to MrsFlee]

Hi. sorry that you are struggling with your PBC but it does take while to adjust to the diagnosis and the shock. I hope you are taking your URSO. I take them at bedtime (4). I was diagnosed in 1994 in South Africa where there is no treatment for the disease. I was relieved when I contacted the PBC Foundation in 1995 on return to Scotland who informed me about URSO. It is important to keep taking the pills which do help. I have never looked back. I really hope you begin to feel better soon. Hoping you feel better soon. Mulberry

[Readlots]

Hello Violet, you’ve come to the right place. Lots of PBC patients on here. The BLT also have a support group on zoom for people with autoimmune diseases. I’m sure one of the administrators can hook you up. Keep posting, we’re a friendly bunch

[mulberry in reply to Readlots]

Hi thanks for getting back to me. I am living in Forfar, Scotland. I do not know if there is a PBC contact number as I have only been living in Forfar for 1 year.

[Readlots]

The PBC Foundations number is [phone] they are really supportive

[MrsFlee]

thank you to all of your kind and sincere words. Unfortunately Urso stopped working and on Ocaliva. I havent had anything positive to say about it i have felt unwell for a couple of weeks. ☹️