On a good day I feel like I need to accomplish as many things as possible (ie: laundry, groceries; mopping; cooking; and mail.)
He’ll tell me it’s too much at one time. My mind tells me I don’t know when I’m going to feel better again so let me bang out everything. I of course will pay for it later
But he’s not as self sufficient as he was prior to his transplant and has trauma based separation anxiety from me. He says he wants to take things off my plate but then won’t eat correctly if I am… read more
How can you help your husband understand your need to accomplish tasks on good days while managing PBC fatigue?
Your instinct to maximize good days is completely understandable when living with unpredictable fatigue. However, pacing yourself can actually help prevent the severe crashes that follow overexertion.
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I agree in pacing yourself, For our peeps who don't yet realize how our symptoms rule us... I've already forwarded site(s) re: PBC info and also printed condensed versions for them to read and pretty much said nicely that if they want to help me and care about me they'll do a bit of schooling on it so they're up to parr and realize we aren't just playing victim. Just have to hope they actually look into it.
Hi Laura.
I appreciate your comments.
Being supportive is important
Hi Laura!
I agree completely.
I have to listen to my body, and pick one important chore to do that day.
Then I rest.
I
Have friends that don’t understand how I feel a lot, it’s impossible for them to understand.
I just try to be patient with them and try to remember that they don’t have PBC.
Do what you have to do for yourself and your husband will figure this out. He wants you to feel as good as you possibly can on any given day. And I’m sure he knows when you don’t feel your best on one day and you feel better around the other. I have tried to do several things in one day and I just can’t. It was too much for me. So I picked the most important things and then I let everything go. It will be there another day. That’s what I do. Hope you’re having a really nice day. It was nice to talk to you.
I can understand that for sure and all who struggle with PBC can as well. One needs to be careful because doing too much could bring on a flare too. It’s a fine line. We need to remember to pace ourselves and also to continue while we feel terrible although we don’t want to at all. Those days I put less on my plate but I still have certain tasks I want to complete. Some days you have to put off some less important things. It’s maddening when others don’t look after themselves we pull out our hair because we are forced to look after ourselves. We think if I can why can’t you?