I still haven't been able to see my new grandchild and thought I would venture out today by car to do some shopping ....I only went local, bought a handful of things and then the fatigue I'm sure you all relate with kicked in ..
I dragged myself back into the flat and onto the bed .....this has gone on for a week and I'm panicking I will never get to London ........any advice from you wonderful people ? Xx
Cathy,
None of my Drs. Ever told me this, but from my own experience and on this site, we go through flare ups. Stress is my main trigger. But other things could be triggers as well. When im having a flare up , all I can do is sleep and rest. Its scary because you feel like it will never pass. But it does. This has been my experience. I hope you feel better teal soon. Sending you big hugs.
Lorrainelouise
Thank you so much for your kind reply ....I think you have hit the nail on the head .....my episode has lasted a week instead of a day ....this is probably down to the pbc diagnosis last weekend and the arrival of my new granddaughter who I've not seen because of the fatigue
Take care xx
Hi
So sorry you are struggling. I agree with Lorraine Louise. I really you hope you get to see your new granddaughter very soon. Thinking of you. Love and hugs Lynne xxxx
Thank you Lynne
Take care
You are very welcome. Love and hugs Lynne xxxx
So sorry Cathycomehome I think just resting and staying hydrated helps. I sometimes just stretch my legs up in elevated position and take deep breaths. This may sound silly but I find it I get nauseated Vernors gingerale works for me
Have a blessed week it will all work out 🌻
You guys have been such a comfort to me Thank you
I've had many issues since june and my fatigue and mental fog has lasted 12 weeks without let up...I'm new to Urso. I spoke to Collette and she felt it takes about 16 weeks to get into your system so hoping I'll start bouncing back then.
Cathy don't despair their is plenty of time and try Skype or Whatapp....so you don't feel you are missing out. I appreciate it's not the same but maybe a decent second.
We are all here for you and can imagine your excitement to see your grandchild.
Get yourself better first and then book somewhere close by so you can crash out in comfort and quiet, whenever you want to recharge your batteries xxxx
Thanks for your reply .......I'm in limbo at the moment as not yet seen a specialist and gaining so much comfort and knowledge from you guys ...
The GP can't help, the specialist can, so it's about educating myself, keeping calm and looking at the pics of my beautiful new granddaughter , the goal I hope to reach is getting to London ASAP ...
Take care
Hi there
Can I just say congrats on your new grandchild. I’m in the throws at the moment of what I say is a flare up but yesterday I had my grandchildren all day, but me being me couldn’t let my daughter down so I struggled on. Till after lunch then we settled to watch a movie but the kids were laughing because I kept falling asleep.
What I normally do if I got something coming up I really totally rest for a few days before and hope it works. Sometime it does but you can’t control this fatigue. I’ve spoke to my consultant bout it and they say there is nothing they can do about it so I just deal with it the best I can. Don’t feel guilty for being so tired it’s totally out of your control.
Thank you for your reply, sorry to hear you feeling bad at the moment
Those pesky grandchildren but where would we be without them ?
They are a challenge especially when you are feeling poorly ...
Keep resting and being an amazing nanny xx
In the beginning I was in a similar state... Couldn't do anything apart from lying in bed or maybe getting dressed by 3pm..
Gradually I learnt to pace myself..
Don't shower on the day you want to do something else...
Get dressed slowly... Then rest... Then try a very short trip... Little supermarkets are even a challenge.. But I coped better after a while.
Just rest, and rest until you start to feel a little more human..
Then do a little bit but don't do much..
Then more rest...
Don't waste energy on unnecessary things e. g.. Dust...
It took me 2/3 weeks to improve after the first few bouts of total exhaustion... Mostly in bed... Patience and pacing is the key...
If you are suffering with nausea as well try something starchy... I find custard creams or rich tea help,nothing fatty, drink plenty of water and some protein if you can manage it...
Perhaps you could arrange a friend to drive you to visit your grandchild.. Or use Skype... You will get to see them it just might take a little longer... But don't worry you will get there...
Maybe they would come to you... Explain your poorly and can't travel at the moment... Maybe it will take them a few weeks as well..
Stress is definitely the enemy...
I was in bed after I had my fourth child and thought I would be in bed forever.. Slowly slowly... Catchy monkey... Believe me take the time pressure off yourself and you will eventually get there but it doesn't matter if it takes a little while.. The baby will not be aware and your family will understand if you explain. Don't rush yourself or you will be back to square one...
Very best wishes cazer x
What a lovely post and so much help to me at the moment ...
I have managed to face time the baby which was amazing ,till the other grandchildren asked " where are you nanny , why aren't you in London ? "
The quick fire answer would have been " nanny not well " but I thought no, this condition isn't going to get me down so replied " nanny will be there soon just got to sort out some presents !!!!"
I do find plain biscuits, crackers with a smidgen of butter and plenty of tea helps me when I feel nauseous ....not sure if the nausea is part of the illness or fear ...?
I know there are so many questions to ask and I'm taking it step by step...
Got a GP appointment Wednesday so have to leave the flat and who knows I may even be able to get on that train soon
Have a good day, you do not realise how comforted I am by your support xx
Hi Cathy, congratulations on your new grandchild. I got my first grandchild 3 months ago so I understand your feelings.
The more you stress about trying to get to see the wee baby, the more the fatigue will fight against you. Let it take its course you will get there. I’m sure your family understand what’s happening with you, if they don’t I’d recommend them looking into PBC. There’s no hard fast rules with it. Each day can be totally different. You just have to go with it.
Rest my lovely, your body needs it. Once you’re stronger you will see that cherub and get lots of cuddles.
Stay in touch on here, everyone is here to help you.
Jane xx
Hi Jane,
I could cry with all the lovely people and their comments on this forum ...
I have faced timed my family today and seen the beautiful baby ......my spirits already lifted and learning every minute how to live with this condition .
You are all in my thoughts
Much love xx
Hi Cathy🤗,
I was diagnosed 3 months ago and have responded well to Ursodiol.
But for years, I had noticed I would have extreme fatigue during the day if I ate a high-carb meal.
I began noticing when I ate leftover pasta for lunch at my desk one day, and then 30 minutes later I was almost asleep, in a terrible brain fog.
I mentioned to my primary doc, so she ran tests for celiac (wheat intolerance), thyroid, etc. but everything was negative. Then she noticed my liver enzymes were climbing each time I had bloodwork, so then I was referred to a liver specialist, who ran more tests, then diagnosed me with PBC.
I noticed a pattern when I ate bread, pasta, pizza, corn chips, oatmeal, pancakes, cake, muffins (all the good stuff!). I would almost always have to lay down and take a short nap as I was so sleepy, and also my joints hurts worse. Then the past couple of years, I would get night sweats, racing heart, and migraines after eating a high-carb dinner.
So I started eliminating certain foods, and found that wheat, oats and corn, and sugary sweets made me very fatigued. Fruit, potatoes and rice seems okay in small portions for some reason!
So I try to stick to a low carb, low fat diet, but it is hard when you have a family! Also, I lost a lot of weight and I didn’t need to, so I’m trying to gain a few pounds.
So maybe keep a food diary for a couple of weeks, and you may see a pattern emerging. Eliminate things you suspect make you feel bad and maybe you will find it is something in your diet.
Hope this was helpful!
Thank you this is very helpful ....I had terrible tummy ache last eve , chocolate buttons !!!???? My confidence has gone but today I'm hoping to get out and try to get a bus into town, and back ASAP
Take care xx
I inherited 2 grandchildren when my son got a new partner who has 2 little boys... They were 1 and 2 1/2 at the time... On their first visit we were called grandma and grandpa
Witin a few visit they were comfortable enough to be comforted by us, and now we babysit and they are happy it's us there if they wake up... Its lovely.. We are definitely grandparents and those little boys consider us so..
My point is kids do not worry they are so accepting... Its OK to say you are poorly at the moment.. Try not to put extra pressure on yourself..
Get pressies delivered there ask your daughter or son to put them aside until you get there...
Would the coach be easier and then a taxi the other end... Hopefully the same price overall..
As I say maybe try finding someone to drive you..
Do you stay??
Maybe go up the day before so you can rest from the travel... It will exhaust you..
We do that if we can.. It helps..
So pleased you've managed to Skype... Try and do that as much as you can... But please don't feel you can't be honest with your family...
Do you live a long way away??
We are in the southwest... Quite a long way from a anywhere.. Ha ha...
Very green though.
Very best wishes cazer x
Hi Cazer,
I am in Nottingham and most of my family in London .....I live on my own and I think I've become housebound the last week ,as confidence has been knocked with the diagnosis, the fatigue, the nausea and last eve tummy ache .....I know with time I will get there but at the moment I'm scared to go out ....
I am trying to not rely on my car, so a walk to the bus stop ( even if I don't get on ) is my aim today ....
Thanks for your reply
Take care
Just a quick question to all you unfortunates with aih and pbc how was the aih diagnosed?
Yes, its me again :) Did any of you have right side pain that would go into your back before you were diagnosed? 
Were you a smoker prior to diagnosis?
Question. Can a physical trauma bring on an episode of severe fatigue ?
Also member PBCers.org; looking forward to "meeting all of you" at this site 
