Having shared a blog with a few of you , talking about no one caring, friends not being there, never being asked out any more and so on, and so many of you saying kind soothing things xx well last night took the biscuit!!
I told my husband how lonely and unwell I have been feeling and that I had joined this group and how brilliant it was etc etc,, he said "Thank goodness, hope they help, you have been so hard to live with and I must understand how he feel ,as I am so grumpy, cross and hard to live with" (twice) end of conversation!!!
I rest my case! Thanks to you guys I wont put aresnic in his dinner!!!
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Lisacj
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Well you might like to suggest it could happen to him (highly unlikely) by that I mean a chronic illness and that in a conversation that is feeling right for you to have you need empathy from him as your partner as well as us PBCers.... it is a great group. Take heart and know you are not alone.
You need to take a step back and put yourself in his shoes. MY husband and I have lived with PBC for 18 years and there are good, bad and worse times, but only you are responsible for how feel on a day to day basis and its jolly hard work keeping positive over tiredness and pain. BUT no-one will want to friends if you are miserable all the time and living with someone miserable is very hard, however sympathetic and loving. SO..its up to you. I went to a councillor who was happy to be paid to listen to my moans, but she made me realise that I have choices in how I deal with my lot. Its a huge effort that you don't have a lot of energy for but Positive mental Attitude is a winner all round. Google it and get some tips, contact the PBC Foundation who run courses and have info on PMA.
best of luck and if you want to get in touch - do
I find it difficult at times now I have PBC (diagnosed Dec 2010) as prior to 2008 I had been a widow for 15yrs.
I met up with my now 2nd husband at the end of 2008 and we got married May 2009. Before we had been married a year I started with the itch. Up until then I'd no idea there might be something wrong.
For me I found it more difficult as when I met my first husband in the 1980's he did have a long term condition (asthma) so it was with us from the beginning. How we lived our lives then started from the time we met.
I am perfectly fine throughout the day but come evening that is when I start becoming fidgety and unable to settle due to the prickles of the itch starting.
We are going through ups and downs with the PBC but we still get out and about during the day despite. I can well understand how my husband is feeling due to myself being in that position all those years ago with my first husband.
The only thing that I know is if you can't work together it isn't going to be as comfortable. I know one thing, I feel I go to solitary confinement some nights now as if I've been fidgeting in bed for a couple hours due to the itch I simply have to get up now and go downstairs. Never being one to get up during the night and perhaps read, put tv on, I end up being stuck on the couch until I finally drift off to sleep. I then return to bed around 5a.m. as the itch has somehow vanished for another 18hrs. At least that way it is my husband who also isn't losing out on sleep. Then of course he feels guilty for being able to nod off to sleep whilst I am in the throes of the itch but at the end of the day there's very little he can do to alleviate that.
Its true, if men cant see it ..ie a broken arm or a huge cut they just forget about it. My husband is great but just 'forgets' that i have this illness. Then if im feeling low and not so great i get 'wots up with you now?' i dont even bother to tell him as even im bored with repeating myself lol. I do find this site is great , for the info and support but the best is when you can let off steam and moan , and you know no one on here is going to roll their eyes at you as we are in the same boat. keep your chin up and remember we care ,and we dont mind how miserable you are as we have all been there and frequenlty visit that dark place . xxxxx
Hi everyone, I am new to this site, although I have been reading blogs, which I find interesting and sometimes very helpful. 2012 was the worst year ever for me. I lost my mum in January, and then my dad in June. Then a few months later I was told I have non-alcoholic liver disease. Before I had a chance to properly come to terms with that, I was told I also have P.B,C!!! Special offer maybe? Buy one, get one free? Anyway, like it or not, I have to live with it. I totally agree with the comment that if you can't actually SEE something wrong...then everything is fine. At the moment I am coping with the itchy problems (night times only) and also trying very hard to deal with feeling drained a lot of the time. I guess I have a long road ahead of me
Yes, I seem to itch on and off most of the time, not too major, but do get little blisters or break the skin on my hands mostly. I find a little cream helps, non perfumed etc.. Good luck
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