Hi ladies,
Last nite my husband and I were chatting and I said how tired I had been all week and been sleeping a lot, he had been away working. And his words of wisdom to me were just fight it. The worst thing someone can say to you when your are struggling. It was unusual for him he normally good about it.
Has anyone said that to you all before it really made me feel guilty for being ill.
Hi kimphoebe,
Yes.
My husband is generally underatanding but has came out with the odd silly comment. He is the first to fight my corner against anyone else though. Think they are allowed an off day at times,i forget it is hard on him. We dont do the things we use do just now. I am always hopeful though that i get back to something like my old self.
Never feel guilty for feeling the way you do,i know its easier said than done 😁. Rest when you need to ,thats what i do now.
Take care x
Thankyou For your kind words
We can’t control what others say to us; we can only manage how we react or respond. Though I think you only wanted sympathetic acknowledgment of your fatigue.
Never feel guilty. No one in their right mind would want to have an incurable condition through no fault of their own.
Be kind to yourself. If it were a friend going through this, imagine what you would say to them. You would be kind & say compassionate & sympathetic words. Say those words to yourself. Now feel better!
Hugs,
Haley
it can sure strike fear in our heart when a comment seems unkind or unfeeling. It's human nature and goes with a time in our lives when we were totally dependent for our survival on the goodness of others. And now, with our uncertain health, that fear can be tapped into so easily. I agree with all said by angel and ninja. Other people have their off-times, and we don't need to concern ourselves about what we cannot change (and that is always, always, anything that other people say.) You must be missing your little dog no end kimpheobe. I know they can't be replaced. But have you decided or thought about if you would ever like to have another dog? The unconditional love my dog gives me keeps me on a more even keel than I was without her. She doesn't ask me to 'fight it', she just lays down beside me when I'm tired and is ready to do anything when I'm ready. (It'd be a tough act for a mere nonPBC mortal to follow!) I hope you've had a chance to clear the air with your husband. x
I think you are all right not really been myself for a while and you are right really missing my little chap he kept me going through the day. Don't think will be getting another dog it to heartbreaking.
Doesn't help just been dx with osteoporosis last week so think was at a low when the remark was made. Posted today because you ladies are always a great help.
Thankyou
Funny, i also have recently been diagnosed with osteoarthritis. It does feel like we keep getting the fish slap to face. 🐟🤪.. My shoulders the worst just now, can't dress and undress myself, waiting to hear about operation for them.
Does not help that we are restricted with pain killers as well.
Xx
Hi Kim,
Yes.. I have had people tell me "Fight through it," "Mind over Matter" "be a warrior" ... on and on..
and if I DO let those words play on my head.. I can feel like I am just not trying hard enough or that I'm just giving in too easy.. whatever.
The last thing we need to do is beat ourselves up because we FEEL how we FEEL..
we didn't ask for crazy weird rare disease. AND research hasn't yet come up with breakthroughs for fatigue treatment. Fatigue is real.
Sometimes the fatigue just has its way with us.. hopefully we make the best of it (self care) and make it through to a better day.
I think we all fear being a "complainer" or that we are "whining" if we say out loud HOW it's really effecting us.. BUT, in reality I know most of us suck it up and keep the worst of it inside -- to ourselves.
Kim- I'm just glad you could say it out loud here.. we get it. Hubby had a bad day... I'm sure he doesn't even know how those words effected you in that moment.. not an excuse for him. Just part of the fall out of chronic illness.. those who love us are learning and looking for cues on how to best be with us on the journey.
Ride this out Kim however you need and take a hug from me across this Internet line. xoxo
Hello I found this article helped me with my family.
I think it's hard for other people to understand and this article explained just how I felt.
Hi
That was brilliant, Jane. I have Nash but I seem to have obc symptoms. Back in 2014 one consultant said to me it's muscular, there's nothing wrong!! I would like to tell him how wrong he was !! I was diagnosed with Nash November 2016 plus other painful conditions line I'm sure all you have to. Thank you all for your support. Love e hugs Lynne y
Jane, thank you for sharing this article! I felt as if I were reading about myself. The only difference being I didn’t learn I had the disease till I was almost 60. By then I was cirrhotic. Meds have made me feel better, but nothing touches the Fatigue. Anyway I felt better just reading the article 🌷
Good Morning Kimphoebe,
Firstly hello from an unknown friend!
I too suffer with out of the blue tiredness which for some apparent reason I cannot fight no matter what! I'm one if the lucky ones as my husband Derek just advices me to rest or go to bed until the horrid feeling wears off which usually ladt a couple of days.
I'm currently being monitored for PBC and one of the symptoms is tiredness and itchy skin plusxraised bloods.
For the last 6 months I've been on a healthy eating plan and exercising daily which I must admit has reduced the flared ups!,
All I can recommend is listen to your body should you have a life style that allows you too!
Take care my friend
Trish x
I hear you. I feel tired that is my main symptom. Much less energy than I used to have. And while I don't have a husband I do have friends, family and colleagues who don't understand that extreme tiredness. I agree with some of the previous comments - the main thing is that you are kind to yourself, and rest when you need to. Best wishes my friend.
Morning ladies
Feel a lot better this morning after all your kind comments. Got the day to myself as hubby gone off to golf for the day. My only plan for the day is to try get through the day without having to take a nap
But if I can't I can't. Hope you all have a good day. Xx
Does anybody have any suggestions on how to deal with the itch caused by PBC, especially on the scalp? I can not sleep because of it!
Just waiting blood test results very anxioud
Just diagnosed with PBC
New here! Question about Diagnosis 
Latest Labs since off OCA
