My name is Tony and I was diagnosed with PBC (with cirrhosis) 3 years ago. I live in Salisbury UK and keep myself fit having completed 33 years in the military.
The two main issues for me are coming to terms with this disease over which i have little or no control and the feeling of helplessness when i have serious flare ups and am left almost drained of energy or strength!
Are these normal thoughts and does everyone with PBC suffer the same flare ups?
I would love to have some feedback and to feel that I am amongst friends who share the same concerns.
Warmest regards,
Tony
Written by
Tango52
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Welcome to the group. Sorry about the complications you're dealing with. It looks like you take good care of yourself and that's a bonus when dealing with PBC! Already you're ahead of the game. Hopefully you're protecting your liver. At least that's one area we PBCers definitely do have a measure of control. Yes, the fatigue we feel is a common complaint. A woman with PBC who was in her early 60's when I first met her here on this forum 5 years ago gave me some good advice concerning fatigue. (How's that for a runaway sentence?) Anyway, she worked part-time and also was raising her two grandkids! She said she works very hard at getting adequate rest, she tried to eat right and keep herself built up, but confessed that most days because of her fatigue issues, she just had to push herself to get through the day. She said she just does the best she can everyday and does what she has to do. I'll never forget that comment from her. She said "What choice do I have?" So, her plate was definitely full and she has PBC. Unfortunately I lost touch with her. I've wondered how she is. But, I guess what she was saying was that all of us can only do the best that we can do. That's it. Hopefully you have some wiggle room to adjust areas where you can fit in more rest periods...or maybe some meditation to address the helplessness you're feeling. I think many PBCers can really relate to everything you're going through. You're not alone Tony. This is a great forum where I know you'll find support. I'm Stella, late stage 3 fibrosis 🙋♀️. It's nice to meet you.
Hi Stella, thank you so much for your lovely welcome email and the reassuring words you offered me. I am already feeling that I am not alone and that others are going through the same challenges and worries as me. The key thing is realising that I have kind people like you to discuss openly any concerns which I find hard to do with family and friends for fear of upsetting them! Strange thing is I am finding it easier to reach out across the pond than across my lounge. I hope we will stay in touch and share our thoughts and concerns as we make the most of what we have. Warm regards, Tony
Welcome to the club, we are a friendly bunch. The PBC foundation is a good if not the best place to start pbcfoundation.org.uk/
It’s free to join if you’ve not done so already, you won’t regret it, they have all the up to date data on PBC. There is a helpline you can call as I did 11 years ago , they were my saviour at the time.
Due to COVID there holding webinars every Thursday with one of the medical team where you can submit questions if you want too. I watch it live on there Facebook page on Thursday afternoons it’s well with dropping in.
I personally don’t get flares as such just feel fatigue most afternoons but that’s improved since I got a little dog and we do long walks even if I’am tired I always feel better having done it. I am still always laid down by 8pm, no late nights for me anymore but at least is not 2pm like it used to be... . It looks like you got the movement is medicine off to a fine art though.
Feeling like your not in control, or for me more of a feeling of grieving for the life I thought I was going to have, was one thing it took me a long time to come to terms with. That definitely affected my energy levels.
This again is where the foundation helped,.
I took control of my treatment plan, no more sitting at the hospital just listening to what was said, I wanted explanations. I wanted to know what was best for me personally, not just what the text book said. I learnt all I could about PBC, I discussed what I’d learnt and sorted the wheat from the chafe so to speak, that gave me back an element of control I was seeking. I think it even helped the fatigue a little as mood does affect your energy levels.
Even the help and tips from this forum were /are invaluable in finding ways to make life better. We are all on personal journeys but help is at hand when you need it. Take care.
Thank you so much for your thoughtful note and the outstanding advice on taking control and not just remaining on receive mode! I confess to having done just that since my diagnosis and found myself trying to find my own answers when consultants appear to be providing me with text book answers and treatment. I started to feel that I was “just another patient” and would only get the full attention of the medical team when I was in an advanced stage. I accept that this is negative thinking but lack of answers and honest prognosis led me down that path. This lack of clarity leads me to dark places as I worry about the special events in the future that I may well miss such as the graduation of my twin Granddaughters or great grandchildren etc. I know I need to become more positive and live for the moment and enjoy life to the full and I am hoping that this forum of likeminded and warm people will help me to do just that.
I was diagnosed 2 years ago and, even though I had family members with PBC, it was still a complete shock. The first sentence I read after googling PBC was 'life expectancy' and my mind immediately took me to the dark places. I was really not able to take the diagnosis in for the first few months and constantly worried about my future. I have to say that I am, for the most part asymptomatic and take Ursofalk. I am lucky that I don't suffer the itch or fatigue. One of the best pieces of advice I read, one which helped calm me down, was "you don't die from PBC, you die with it". I have learned to take it easy, look after myself (and its easy to see from your photo that you already do this) and not worry about things I can't control. Two years on and I am no worse than when diagnosed. Hope all goes well for you!
Thank you so much for your positive and helpful message. It is obvious we started at the same point in terms of shock and visiting dark places and you seem to have adopted a very positive approach to life. I do intend to concentrate on the “now” and deal with the future if and when things change. I could not put your name at the start of this message but whoever Noomum is, I thank you. Warm regards,
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