HELLO THERE, WAS DIAGNOSED 2014 WITH PRIMARY BILIARY CHOLONGITUS AND I AM TRYING TO FIND ANY WAY TO DEAL WITH THE MENTAL NEGATIVENESS OF THE CONDITION, THANK YOU SO IF ANYBODY HAS ANY INFO ON THE SUBJECT I WOULD BE MOST APPRECIATIVE, THANK YOU.
HARRY BAYNE.
I was diagnosed in 2016. I try to eat healthy, exercise and take my Urso and give the worry to God. He is ultimately in control!
Join the PBC foundation. They advocate trying to have a positive mindset to overcome/ improve, the symptoms of PBC which currently have no medicines to help like fatigue. They have an app, which contains a compendium if up to date info. They were instrumental in getting the name change from cirrhosis to Cholangitis (which in most cases is much more accurate). They worked with the European Association for the Study of the Liver (EAsL) to create a lay persons copy of new diagnosis and treatment guidelines for PBC.
They are happy to talk on the phone, and also do workshops and seminars/webinars. Robert from the foundation does a lot of work around living with PBC by reframing your thinking. They recommend healthy eating, getting whatever exercise you can (within your capabilities), but most of all living your life. You are the same person, you may just have to make some allowances for yourself.
Anyway, I can't recommend them more highly.
Best of luck, take care and stay well.
Wass
Well written Wass !
HI THERE AND THANK YOU FOR YOUR CONCERN, I DO TRY TO KEEP BUSY ETC ETC BUT NEGATIVENESS KEEPS CREEPING IN AND FEELS LIKE YOU'RE GOING NAD ST TIMES.
HOWEVER, ONWARD AND UPWARD, YES.
HARRY.
Wass, has given you the best advice anyone could, if it had not been for the Pbc foundation, I don’t know where I’d be today.
Getting a diagnosis for a chronic condition when you thought you were fit and healthy can come as a shock, and the foundation can help with that, through different ways, there’s one to suit most people.
I know for me: the diagnosis was like I was grieving for my life as I saw it would be, on top of that was the fear of the unknown about Pbc, that was 10 years ago.
Today I still live my life pretty much the same as I did, I still do everything I want, but need to pace myself more which isn’t a bad thing. I live a lot healthier now and dropped all the so called bad habits and who knows what else would have come along , had I not changed to a healthier life style.
Practice anything that gives you a positive attitude I like meditation it gives me a focus if the negativity rears it’s head for to long. If you don’t do anything else click on the link and read all you can about pbc, then give them a call you won’t regret it.
There’s also the pbc foundation supported page on health unlocked , where there are lots of others with PBC caring and sharing.
HELLO CANDY 12, I'M HARRY, THANK YOU FOR YOUR REPLY AND TALKING OF NEGATIVITY, I THOUGHT TO LOOK AND SEE IF I HAD GOT A REPLY AS I WROTE TO TWO DIFFERENT PLACES AND RIGHT AWAY I THOUGHT NAW BET I HAVEN'T GOT ONE
BUT I RECIEVED A FEW. MUST STOP THIS NEGY NEGY. SO DO YOU WORK AT ALL AND DO YOU HAVE ANY HOBBIES, WHAT DO YOU LIKE DOING.
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