Feeling down with PBC

[shirley29485]

I need to vent! When I was diagnosed a month or so ago I did not shed 1 tear. A couple of days ago I broke down mentally. PBC has warn me down I feel as those I have been robbed of my life as I know it. I am Stage 3 Fibrosis with bridging. I itch, nausea, pain, headaches..everything. I just couldnt get through the day. I am 50 years old and raising 4 kids from 17 to 13.. I am tired and exhausted. I have lung Bronchiectasis/ MAC... Everything causes fatigue. I feel helpless, and hopeless...it's the why me story. I did everything right and still all this sickness. I wake up to pain, and go to bed with pain. I can't think of anything outside my realm.. Im stupid to what is going on around me. Its seems there is no enough time to worry about other things besides the only things on my mind for the day of fatigue. Its is quite sad that we suffer so much and have to be in liver failure to transplant. I would rather get it now and feel better now and not later. I am on urso but my specialist told right from the rip not to get my hopes up. He really did not think it would do much good. Not sure why he would say that when others are doing so well with the meds. My biopsy said Chronic Hep... PBC with bridging and fibrosis. All I know is I am sick and its hopeless how do you cope with so much and still pretend to be happy?

[angse]

Hi Shirley

So sorry for your pain, you have to vent, scream, cry, let it go, I was the same I have Cirrohiss and lived in shock for about a year, no life shut myself away had no life at all really, had a terrible bleed last year due to portal hypertension losing 5 pints blood, lucky I survived, in a sense I know how hopeless you must be feeling, all the pain you are in, you can't pretend to be happy, explain to family members how you are really feeling, ask for help as and when you need it, try to make life a little easier for yourself in some way, but above all try not to give in, I know its easier said then done, but you have to live. I wish you all the best with your health, and I hope your pain will ease. Annette

[bestiebabe]

Sorry you are having a bad time with PBC and the rest of it. I have had PBC for 20 years,along with many other illnesses. All I can say is the pain and fatigue is delibitating and hard to handle but I would rather feel something than the alternativeI had a transplant in January and at least now I have a healthy liver. I still have all my illnesses including the chance that my PBC will start again. A new liver does not mean the auto immune condition goes away.You have a family and you need to be strong for them. It can and will get you down but youneed to learn when to rest for your fatigue, find ways to deal with itching and believe me you do start to cope with pain. My PMR flares up and oesteoporosis doesn't help but I have a positive mental attitude. Take time to come to terms with your life, I am 60 and every day I am so grateful to my donor and her family and also that I am still here to feel pain and other symptoms

[skywalker]

Hi Shirley, So sorry to hear your feeling this way, although it is understandable. Have you joined the PBC site on here, and also the PBC Foundation! There are also PBC groups on facebook where you will receive much needed support. It is completely normal to feel this way, I myself am at a pre-clinical stage, but if you join other groups there are many many ladie's (and some men) who have a more advanced staging.

The staging thing can seem really scarey but it by no means that your life is over, quite the opposite for many people.... it has made them embrace life more! Please call the PBC Foundation and ask to speak to Collette.... she will put your mind at ease for you, Big Hugs and best wishes xxxx

[shirley29485 in reply to skywalker]

Thank you so much

you big problem is I have all symptoms...I am stage 3 and my dr. does not think mess will work..I'm OK with it all. I really have no choice..pain and fatigue get rid of those and I'm good.

[Jojowen]

I know how you feel but there is hope. Urso worked for me and I am much better today than a couple of months ago. For better and worse these diseases are not static. You will feel better sometimes. It is horrid we will never be completely well again. But there will be good days, it is hard to cope and the situation we are all in is terribly unfair (and friends and family cannot really understand) but I do think the first months are the worst. Put yourself first for a while. You will get back to who you were the good days to come.

[BLTHollyDawson Volunteer]

Good Afternoon,

I am sorry to hear you are feeling so down and that your consultant was so negative. Urso does work for some people and there are other alternatives if it is not suited to you.

Have you tried talking to the PBC foundation? They are very supportive and have a wealth of experience about PBC. Alternatively, you could contact LiverNorth or another of our support groups who also have experience of living with PBC, their contact details can be found on our website: britishlivertrust.org.uk/li...

Trying to cope with everything by yourself and ‘keeping it all in’ may make things harder – is there anyone that you trust that you can confide in and talk things through with?

Kind regards

Sandy Forsyth

Patient Support and Information Manager