Just had the best comment by far
A work colleague ask what I was doing tonight. I replyed nothing I'm to tired to do anything in the evenings any more.
I was told to buck myself up and sort myself out, you haven't lost a limb or anything.
So upset at mo
I know it's hard not to take things personally, it was a very insensitive thing to say. I think you can only put it down to ignorance. Maybe give this colleague a PBC leaflet explaining the symptoms you suffer with.
So sorry you had to hear that. I know people are saying things like that behind my back but they don't say it to me. I do understand why people don't get it, I don't always get it myself (I sometimes plan far too much only to become completely exhausted or get physically hurt). It is really really hard to deal with enery loss and exhaustion! The good GP I met recently said that I should rest more. Just rest. So just rest, Michelle, hopefully your energy will return quicker that way. We can still hope for energy and a feeling of well-being to return.
I chose to play my PBC diagnosis with not actually informing friends I see a lot of out and about. I did inform some friends that I don't see so often but one of my friends who lives a couple hours drive away, she did try to find out a few things about PBC when I told her I had this. She works in the admin of a GP surgery and she told me she had asked one of the GPs what PBC was. She then said the GP said that they had a couple of patients at the practice that she didn't know about. So she got a bit of an understanding about it and at times by phone or email she has asked me a few things but between us we don't really bring it into conversation. When we last saw each other a couple years ago she asked a few things and then that was that. Unlike my own family who would say if out even in the daytime if at an establishment that sold alcohol, this friend and her husband simply asked what drinks we were all having, nothing else. Some of my own family have previously said, "The one won't hurt" and I've had to say again that I do not want any alcohol and tend to add, 'at this moment in time' (though I don't drink and never bothered much pre-2010 when I was informed I had PBC, it just does not bother me).
Nobody has a clue what it's like, I have lost all my friends over the last couple of years because of this disease. But had to make a choice my friends or my grandchildren have not got the energy for both so my grandchildren won. I am bit upset over it but learning to deal with it, so I wouldn't lose any sleep over it if I was you.
I think at the end of the day PBC can be a tricky condition to have. Yes we know what it can lead to and hope it never does as it won't for majority of us but meanwhile due to the majority walking round looking notso bad on the outside as I tend to do, seem normal and healthy, it can be realyed wrong by others.
Yes majority of PBC patients can work but at some point they might not be able to do and have to make changes and certain decisions.
For myself I am walking round quite normal during the day but come early evening I start to feel prickly and restless due to it all. If anyone was to spend the night near me they'd understand more as I tend to not sleep very good most nights and sometimes get out of bed to just pop to the loo that I think has now become habit as when I rise and then return to bed I get that 5mins at least respite from the itch before it restarts, in that time I hope I have nodded off again.
I have noticed in the last 6 months I have struggled to get out of bed of a morning due to broken nights sleep. I feel at my best for sleep around 6a.m. but it isn't a good thing with the day ahead. I am almost 51 now and I have noticed in the last few yrs that I have felt more tired which I put down to sleep pattern but also the fact that I am going through the menopause now. (Fortuntely no symptons there really except feeling overly-hot at night, not good for the itch!)
Wow what a nob! I would say, "How would you feel if you were slowly having an organ absorbed and destroyed?" Wish I could get to where you are and tell them what an insensitive jerk they were being.
Or punch them in the throat. That's very satifying too....
Revenge fantasies work for me.
Lol that's funny, revenge fantasises sounds good
You can only hope that one day that person will get a disease and then they will think back to what they said to you. In fact I would have said that to the person. Its easy to say comments like that when you have your health but don't worry their time will come.
It all depends on who says it & wether I really like them or not. But I have been known to snap back with. True but when my liver finally decides to do a runner There's no false one to replace it. Soon shuts then up. Xx take care your stronger than them honey. X
Sorry Michelle2015 to read this but it's a common response it seems now.
Although fatigue left me the following year after daignose (informed I had PBC Dec 2010 aged 46), I find I start to feel really tired early evening due to the fact I itch at night and often I don't manage to have much sleep so it rolls over into the following day causing tiredness. I am not really fit to do anything in the evenings anymore and to be truthful the latest I was out in the last few years now would be when I was on holiday in Cornwall last year and went to Scilly for the day. Had to rise at 5a.m. after hardly much sleep during the night, then travel to Land's End from Mevagissey for the plane to fly to the island. My husband and I got to the island at 9a.m. It was 4p.m. when we boarded the ferry back to Penzance and I struggled unbeknown to others around me with the 3 and half hours sail back as I felt uncomfortable and then a car journey to holiday base taking just over an hour so it was not far off 10p.m. when we landed back. I really did feel it the following day as anyone would ahve expected me to sleep through the night but no, I had broken sleep due to the itch once more.
I try to soldier on but at times I do feel it is difficult. I am fortunate that my husband over the last few years has got to realise that at times I am not really 100% to do certain things at certain times and these days when we have freetime he goes by my rising and getting ready to go out. But I am almost 51 and though I am capable of walking long distances, miles in fact when I go places, there are certain times in the day that I am quite unable, night is one. Sadly some of my family do not understand and I've encountered the words, "We all get tired" from time-to-time.
My bug-bear with PBC is the other factor, ignorant people who are not interested in finding out certain things, automatically assume if I was to say I had a liver problem, that I've been a secret alcohol drinker my adult life. This is to me something that I find extremely irritating. I've even encountered it with the medical profession.
You are definitely not alone Michelle2015, we all understand how it can be at times.
How insensitive of your colleague. I hope not all your coworkers are like that
I did the opposite in work I held a dress down day where everyone wears casual clothes.
I did it to raise money for the pbc foundation.. I had leaflets on the condition and handed them out and explained what it can do and that its not alcohol realated I raised awarnes and raised nearly a thousand pounds .
maybe you could do this ? Work are more understanding now and when I asked to reduce my hours they where fine also when there is an evening out and I say I can't go there's no questions asked and somebody will fill me in on the gossip ! There will always be one and maybe they have their own demons in their private life x
I did the peanut butter cookie awareness day for PBC last year (something I saw on facebook!) I took cookies in for everyone and talked to them about the condition and put pictures up on Facebook raising awareness with my colleagues and my friends and family at the same time. I'd never had any negative comments, but I think the more people who understand this condition the better! Everyone was very interested in learning about PBC, and I think it helped them to be a bit more understanding when I said I was tired. So I'd got for the awareness raising at work. Fingers crossed itll work for you as well! Xx
What goes around comes around!!! Don't waste your time or energy giving this person the time of day. If they could live one day in our shoes boy would they think twice before speaking. Ignorance is no excuse for rudeness.
Take care of yourself
Hi, I have had PBC for a few years now and really, it's a case of going with how you feel day to day. Don't beat yourself up about not being able to do something one day, just go with it. This Friday, I had the "shivers" where you get internal shivers and a great need to get warm and sleep (dressing gown, hot water bottle and fluffy throw) and I did just that - no guilt - I knew I had to rest and get through it. The next day, I was well enough to go swimming (but not overdoing it!). There will be days when you have normal energy enough to do stuff. I make sure I have at least two days within the week where I do nothing - purely to ensure my body rests. It's important that you listen to your body and not push it too much. If you go out and do something that tires you, stay in the next day and do nothing but rest. Eventually you will know the rhythm of your body and what you need to ensure you stay well and rested. You need to accept that this is how it is now and manage it for yourself - never mind what other people think, it's not important. What is important is that you know how you feel at any given time and it is you that will manage the good and bad times of the condition. Stick with it and chill out about it....this is how life is now and you need to try and accept it and live life as best you can.
PBC research
im new to pbc
PBC confirmed
Paracetamol with pbc 
PBC, coeliacs & now RA!
