Alone and isolated

[PBC2012]

Does anyone else feel alone and isolated? I spend most of my time laying down in pain and exhausted but, when that rare occasion occurs that I feel somewhat normal, everyone around me scatters. I know they don't understand but do they know I don't understand any of this myself?

[Alley27]

Hi PBC2012...I am so sorry you feel so low....I was also diagnosed with PBC/AIH this year, two months ago to be exact, and I must say that at times I feel isolated and very alone. I don't spend most my time laying down, I made the decision to fight no to allow this nasty illness to control my life..although on some days I could most definitely stay in bed, but when I have good days I generally make time to go out and meet with friends, and if I have the energy when I get back I catch up with house work etc.

I have my family at home, husband and 2 son's, but they have all been so used to me doing everything that they can't understand when I have to simply lie down and delegate or leave things until I can manage. They don't understand what is going on, and they also don't realize that I am still learning about my illness myself.

Unfortunately, with PBC/AIH we find ourselves having to make life adjustments, we have to find and know our limits which, when you have been so independant and active before, comes as a big shock to us; and others possibly don't understand, but these adjustments are necessary so we can find a balance depending on how much energy we have available; and each day is different.

I know right now you feel isolated, but really it will become better as you learn more about your illness and ultimately yourself. Most of us who have joined this site come on not understanding anything about our condiitons, but there are so many wonderful people on this site who are willing to listen and offer advice, cheer you up and let you have a good moan...they are not doctors, they are like you and me. Our illness affects each of us differently..but they are beautiful souls.

I'd say, read the stories on here, there is a lot of information and support, also get your friends to have a look through..they may get a better understanding of what you are going through. Hope this is hlepful.

My thoughts and best wishes are with you.

Take care of you

xxconniefused

[wongie]

Hi PBC2012, so sorry your not feeling to good. I don't have the problem of having to lay down during the day, however by the end of the day my body is in so much pain and I'm really tired. I feel that family scatter from us because they don't understand and they don't want us to be ill, because they were used to us doing everything for them. My husband is really caring and would do anything for me, but when I was talking to him last night about feeling anxious waiting for my biopsy, he changed the subject. I was really annoyed at first and then I thought about it and tried to look at it from his side. I think he changed the subject because he is scared and if we don't talk about it I'll be okay. Conniefused was spot on about using this site and others like it to gain strength in the knowledge we all care about what your feeling and genuinally hope your okay.Big Hug coming your way xx

[PBC2012]

That's how my family acts ....if we don't talk about it it will go away. The tiredness and stuff come from fibromyalgia, deression and of course the PBC. Thank everyone for the insight and thoughts ...they do help!

...

[Alley27 in reply to PBC2012]

Hi My family act exactly the same...my husband just will not talk about it and thinks it will go away..I may ahve to reassess myrelationship with him if he continues. I agree with wongie when she said that our loved ones don't like to see us unwell, and they miss us doing evrything with them.

My son's are more understanding than my husband, they have read and researched everything that the hospital has said..my husband is another matter,

Sending Hugs

xxconniefused

[zipitydoo]

Hi,

just wondering if you have been put back onto your fibro meds yet ? if not then that will not be helping you to get through at all.

[PBC2012 in reply to zipitydoo]

No zipitydoo I have not been put back on my fibro meds as well as having my RA meds and DDD meds either. Basically no medications like that or pain meds until I see the liver soecialist in the end of August.

[zipitydoo in reply to PBC2012]

That wont be helping you then. I think you should ask to be put back on some medication just to see you through until you can get the specialists opinion. Otherwise you will be in a lot of pain and not sleeping which will do you no good and wear you down even more and cause depression aswell.

[PBC2012 in reply to zipitydoo]

I have asked ....they won't ...my psychiatrist kept me on my anxiety /panic medication but that's it. I am waiting to see if my rheumatologist will even refer me to the pain clinic. I know they are trying to help with the liver issues instead of the pain issues

[Cristina_Romania]

The same honest advice as I've given before: contact the PBC Foundation, talk to them, let them share their vast experience in providing support to PBC patients. I have lived for over 10 years with a patient who lacked information, support, counseling, the ability to talk to other people about this problem called PBC (my mother), I have seen what that feels like - but also how big the life quality improvement is when you can talk to competent and also nice, benevolent and friendly people, those who I have met through the PBC Foundation. Do open out, search the contact of other people with the same problem, do not give up because it can still be a beautiful life. Not just words.

[Hidden]

Yes at times I do feel isolated and on my own with PBC.

I put this down to the fact my family expect me to carry on and be the 100% normal person I reckoned I was prior to 2010 when PBC came out.

I still think I am normal and then crack on with things but then come the evening I just want to sit down and not get up!

For me knowing I'm not like I used to was is when evening comes and I wonder if it is going to be an 'Is it or is it not' night regarding itching. I find it easy to forget I have PBC during the day but it is the night that brings it all back and it is then a time when my husband needs to sleep as he rises for work at 6a.m. and works a pretty long day so I then end up feeling guilty if I have had a restless night.

My husband as good as he is does at times switch-off as I have found. I agree it is boring going on about PBC and I try not to but at times it is with you and I expect nearly all of us are of the same thinking here, if we think of something we could perhaps do to maybe help ourselves (dietary, with regards to alleviating the itch, etc) then that can become the current 'hobby'.

I have a good sister but she is pretty ignorant when it comes to health and she is of the thinking that doctors know best whereas I have never been due to past experience with my first late husband. She just does not get the fact that PBC can end up becoming ugly and life-threatening (something I switch off from and hope never happens) and seems to think taking a couple pills each day is the answer to it, I wish!!!

[Hidden]

My friend all scattered when I first got my diagnosis 2 of them because they though and still do think I am alcoholic and the rest of them just in case they got asked to do anything or because I am no use to them anymore as it was always me doing things for them before, the only one who has stood by me through all this is my husband and I pick on him something terrible, he gets the blame for everthing espesially when I am tiered.

[PBC2012]

My fiance and sister, who both do the best they can, get thr most grief from me. Friends huh, I have one that actually calls me and she has just survived breast cancer!

[kosy2]

For me the aloneness and isolation come from the fact that I really do not do much more than sleep, cook dinner, and research PBC. So not much to talk about when a family member or friend calls.

Just yesterday a friend that I had not spoken to for about 3 weeks called to chat and all I had to talk about was how tired I am all the time. She of course had lots to say about what she had done or ways planning to do. Then I had to hear how I just have to push myself and should find a doctor who can "do something".

As for my family - the husband just can not handle any more PBC talk. He will tune out if I forget and say anything about my health. Right after dx my mother did not believe anything was wrong with me and said she did not want to hear any more about it. One of my son has begun to blame everything on "Moms Liver". From why the kitchen light won't work to what's wrong with Kristin (my daughter) his answer is "Mom's Liver".

Before PBC dx I struggling with what will I do now that the kids are almost grown. And then was smacked with being too tired to reach for a drink of water.

It's like I am frozen in time - Jan. 19, 2011. The mail brings a letter that says you have a disease called Primary Biliary Cirrhosis.

[PBC2012 in reply to kosy2]

I understand completely kozy.....my family doesn't want to look at anything being "seriously " wrong. Just get up and try Mel.....you will feel better. Laying around crying isn't going to help ....just try to live normally. My friends,the ones I have left, just say they are sorry and suddenly have to go,they will talk to me soon.

The other day I tried to explain to my sister and fiance that everything happened so quickly that I am still realizing just what I have lost.

[kosy2 in reply to PBC2012]

It's really a shame that those of us in the US are so spread out that it is near impossable to have PBC support group meetings. How wonderful to have weekly meeting where we could see and touch, laugh and cry with others with PBC. Would not feel so alone and isolated.

[PBC2012]

I agree ....from what I can tell the UK is much more informative about PBC.

[Cherwash]

I agree that it would be great to have a group nearby. We are all in the same boat. No one wants to hear us vent our feelings. I have spent the last 2 days crying and being very tearful. I just want so bad to talk with someone and they understand how I feel. Or even if they don't understand at least care about what I feel.. Anyway having a bad day again, just want to go to sleep and not think about anything for awhile. I feel so resentful toward my family right now because I have always been there for them and now I need them to be here for me and it's not happening. If we don't talk about it, it will go away. I often wonder how far the closest person with PBC lives from me.