Introduction to our newer members

[DonnaBoll]

Hi - and welcome! My name is Donna - I facilitate this support group for The PBC Foundation - Health Unlocked. First of all, take a breath. It’s ok. We all, myself included, have been exactly where you are right now…. scared, unsure, mad, sad, and so much more. Stop googling for information - get your info mainly from The PBC Foundation (pbcfoundation.org.uk). It would be so beneficial for you to join The Foundation as well - it’s free to do so.Their website has so much to offer someone who is just diagnosed as well as the person who has had PBC for many years.. Some other great resources are the Mayo and Cleveland Clinics, American Liver Foundation, and The Canadian PBC Society. Even though I live in the US, obviously many of our members live not only in the UK but around the world. Remember that every one of us has PBC differently from any other person in the group. Always be patient and kind to yourself. It takes everyone time for it all to become a reality. It’s natural to often feel we are no longer the person we once were. Never feel alone! Urso is a must drug to take. It has been proven to be the first line treatment for PBC. Take one day at a time. We are all in this together. The more you learn from these reputable sources then the more informed you are of the care you should be getting and deserve. No one should feel they have no one to turn to, even if it’s to vent. Feel free to ask questions here. Don’t hesitate to ask others for similar experiences. Everyone here is always willing to lend an ear or give a kind word. We all learn from each other. Remember to take that breath……

I would love to hear from any of you about how you are and anything you want to share.

[MrsFlee]

hi Donna

Yes I have been on urso since 2011 but recently it has stopped working.

To be honest I haven’t been on any of the websites for a longtime. Due to a history of 5 close members of my family passing away over 4/5 years. I lost 2 beautiful friends who were my support one passed away on my 50th birthday.

I believe I was the centre of gasligjted. By other members of family. Which lasted 5 years to the point I had some type of break down at the start of covid. I started taking blackouts to extreme seizur

[DonnaBoll Administrator in reply to MrsFlee]

First of all I am so sorry to hear about all of this sadness for you in such a short time. I can't imagine all that loss. When families stopped being supportive, I'm sure that was the final straw for you. I hope you are slowly getting better mentally. I so appreciate you taking the time to share all of this with us. Please know we are here if ever you need to just vent.

[MrsFlee in reply to DonnaBoll]

Thank you Donna that’s very kind of you. I

Just everything was getting better but my wee dog is taking seizures. Well she is my daughter and I dog. I have her most of the time. My situation is just getting worse. I am not really coping with it all.

I need to ask something I had some type of blackout/fit or something along this way but my CPN came and she asked if I took anything as she said that’s what I was like.

I haven’t had anytime to myself in about a year.

No sleep 4 hours

No rest ( my hygiene has went downhill )

Not eating much

Having dizzy smell

Exhaustion it’s disabling me

I think everything I have went through is all coming back but a lot worse There is to much to say but I am very slow at the moment

So I never stop it’s non stop and I hate it it

My body is done in I am even having breathingpplrobs and stress of course every day

So I have no idea can you help pls I am getting worse in my head is what is the point being here I just exsist in this world on my own struggling everyday and I sm very lonely

So there a abig load on my shoulders

Can anyone help with this blackout bit still function but I am not here mentally

Yesterday I was seeing double of every thing

I would be so greatful for anything

My brain numb and I get everything wrong

Please help ???

[DonnaBoll Administrator in reply to MrsFlee]

I am so sorry you have all these burdens... and no one seems to take care of you. It seems to that you live in the UK. PLEASE call the 24 hour helpline at The PBC Foundation. the number is [phone]. They have trained people who can talk with you and offer support. Just talking it all out can be helpful. Please feel free to respond to me - even in a private 'chat'.

I will check back in with you later on.