What do you say or feel when your family te... - PBC Foundation
What do you say or feel when your family tell you they think you are crying wolf regarding AIH/PBC illness and how it affects you?
Conniefused, Ignore them, get the best treatment for yourself you can. Just do what your body will let you do. They will never understand the fatique nor the other symptoms. I have worked out all sorts of easy ways to keep my house tidy. I cook very little now, for I have other problems as well as the PBC.
Magnolia
Take them along to your next appointment and let the experts tell them what they have to do to support you
Hi, get them as much info as to how it affects you on a day to day basis, some people it they cant see it they cant or dont want to understand
I have pbc/aih overlap. I do what I can when I can and in stages if necessary. My husband knows that if I say ... thats it today, I cant do anymore, he knows that is it. I dont take advantage and I dont put others in a position they dont want to be in, I try never to complain in front of my family or friends, I have built up a support network of others with pbc through social network, the foundation etc. These are people who know and understand the daily symptons.
I have a friend who has a back problem and finds things difficult. Because I cant see it ... I sometimes think she tries it on a bit. I am most likely doing her an injustice, but it is really really difficult to understand if you cant see it and haven't experienced it. Most people are not angels, Mother Teresa etc. I certainly am not. It doesn't mean I am a bad person, it just means I cant cope with someone elses illness for too long. I go to see her, listen to her talking about her illness ... she never wants to listen to my news. I give her sympathy, a hug and hope I have made her feel better for a couple of hours and then think, I am so glad to escape, I couldn't cope with it for much longer. It might sound awful, but it helps me, because when my family and friends come to see me, I want them to feel they have had a nice time with me and not leave thinking .... she's done nothing but talk about her illness!!!!
I am just telling you what works for me, it doesn';t suit everyone but it might be worth a try. I dont want or expect other people to take my illness on board or be a burden to them, because I dont think it is fair. I wouldn't want to be put in that position. I find, looking at it from another viewpoint helps to give me a realistic perspective. Everyone needs an outlet and to offload, that is why I have a good support network of people with PBC and AIH. You hve made a good start by turning to this site. Lots of different opinions, viewpoints and answers means most people can find something that works for them.
Give them the The Bear Facts to read, perhaps it will make them aware that there is reason why you feel like you do. Just in case anyone doesn`t know what the " The Bear Facts" is, it is the magazine for the PBC foundation (www, pbcfoundation.org.uk) which is free to join and will give you support and the up to date information and news of research going on.
As Magnolia said, look after yourself and do a bit of cheating with the housework!
LOL...am cheating with the housework today.....only doing the necessary. I am also not going to say anything about how I feel, even if they ask me, but I will make them understand that when I say "that's it for today" then that is it for today.
Thank you all for your replies, I feel a bit better about everything today.
xxconniefused
Hi conniefused, I know exactly what you mean. It makes you feel as if no one cares about you. You are expected to dish out the sympathy and care about them but get nothing in return. Its an awful thing to admit to but I feel that I have become pretty hard and now ignore them when they moan about having a headache or cold and just find that I give a quick and rather uninterested response of 'oh really, take something for it then', whereas previously I would have been full of sympathy and would probably have gone out of my way to get them something. I no longer say when I am in pain, not that I was a moaner before anyway, but now when I am having a really bad day I tend to keep it too myself as much as possible, but no one even asks how I am anyway!! It really hurts me deep inside that I have resorted to become like them hard and uncaring, its just not in my nature.
I understand completely. My hubby had swine flue and all I said was od what I have to do, call the gp out by yourself, then go collect what you need for yourself....I don't think I am being hard, it's just how things are now. Like you before I would do anything for my family, even up to the flare I had last few weeks. I don't moan and like you I have never been a moaner. If I have a bad day from now on I will keep it to myself and just have a sleep day.
Today I have cut two lawns...my hubby was inside playing games, and the rest of my family were inside doing their own thing. I am also cooking dinner as well. I am Knackered.....almost passed out, but I am in this on my own which is very clear so I have to get on.
I refuse to be a burden..but a little help goes a long way.
XXconniefused
Connie,
Last weekend,my daughter hurt her back and I had to go into caretaker mode for her. I was run down from being a single mom for 2 weeks, working full time, and I had a moment after mowing the lawn where I thought I was going to break down... I try to shield my kids from how hard things can be for me because they are used to me doing it all. My husband has been reluctant to learn anything much, like if he ignores it it will go away. I was just diagnosed a month ago and am still reeling. Of that time, he's been gone for almost 3 weeks. You are not alone. I am going to have to learn how to ask for what I need and not be superwoman anymore.
All the best to you,
Erin
Hi Erin, I can't hold a job down, the fatigue is too much for me. I decided that I had to give up work for my own sake really. Yeah nearly fainted whilst doing lawn....I was ok 6 weeks ago, they had taken me off steroids..slowly I developed a flare up of the AIH, and I went back to how I was before I went into hospital last year. I was diagnosed AIH/PBC overlap in March 2012. I am now back on steroids, and my face has started to swell after only 10 days on them, not very nice. I imagine I will become a recluse again....I would not go out before.
My kids are grown up, but two of them still live at home with me, which is why I thought they would understand more, but they don't. I am so sorry your husband can't accept what is wrong, or the changes that you need to make in your life so you can care for yourself but some men can't cope very well when their partner is not well. They don't expect something like PBC/AIH to appear out of fresh air..but neither do we who have to deal with it..
It will take time to get your head around things, but this site is fantastic for information and help from others.
Like you, I need to ask for what I want done and not be superwoman anymore, because I know I am not fit enough lolxxx
Alley
I was unfortunate to start with itching and had fatigue badly early part of 2010. I had only been married for 9 months at the time. (I was a widow for 18yrs prior. Never had much at all wrong with me over the years either. Only really saw the GP if one of my 2 children needed to see one.)
I had a feeling later in 2010 whilst waiting for the test to come back for the AMAs that I had PBC as I had suspected when I started delving earlier in the year into what could be wrong when blood test after blood test came back with abnormal LFTs and others to rule out other things came back negative. The day I went to my GP I can still see it clearly now, Dec 2010, he was going to tell me I had PBC and give me urso. I had already made up my mind then that I would give my husband the option to leave if I did have PBC, something that was incurable and never knowing what the future would or wouldn't bring with it.
He said he was going nowhere as it had taken him 13yrs to meet up with me (he was in the army overseas when we started writing) and that was that. He did come to the first appt with the hospital consultant following the diagnosis and I hadn't said that PBC 'could lead to liver transplant'. The hospital consultant said this when he was there. He also mentioned that it's not really understood why people with liver problems do get fatigued and tired with it either.
It's now been two and half years since I was diagnosed and started on urso and though up until end of 2012 things were not easy with the ups and downs of it all, getting used to the fact that regardless I can't really do much about changing that, we have now reached some sort of even keel.
It is true that in the early days my husband did not take it seriously at all. I started booking my GP appts and blood tests on my own and have attended a couple on my own due to this but the turning point came when later last year my bloods started to rise slightly each blood repeat. I've never taken life for granted due to my first husband's death when he was only in his mid-30's (I was only 29 when he died) but it has taken my present husband a bit longer to start to realise that I MIGHT not be around years down the line due to PBC. He says he needs to be involved as quite rightly so, as he has said, if he doesn't come along with me then he hasn't got exactly how things really are.
I have found certain family members just do not take it seriously at all. I don't mention it to them but I occasionally do say if I've not had a good night due to itching (the only sympton of it that I've had now as fatigue and feeling tired a lot left me long since) to my daughter, she does know tho' she unintentionally does go a bit overboard at times. My son, brother and sister all think that the little white pills (2 urso per day) I pop are the cure-all to it (we all wish!) so I just do not talk about PBC.
I haven't told any of my friends except 2 who I don't see as much as I'd like to because I know they'd either not understand or I can think of some who would go way overboard which is something I just do not want.
Fortunately PBC is a disease where it is not easy to see just looking at someone. However, it doesn't help the patient. I have learned to do what I can when I can, I smile and enjoy things sincerely and I really don't talk about it a whole lot unless I am asked. Even then I just say I am so blessed and better off than alot of people and I just take it one day at a time, good and bad. The really caring people will understand and may want to know more, that is your option, the other people don't really understand or believe because it isn't them dealing with it, so just give them a smile, if anything it will cheer you up
Thoughts and prayers, cyndy
It is hard when family dont want to know. I have heard from friends that I'm cured! My husband tries his best bless him and my son that lives at home is great but turns to alcohol at any excuse! Last week I was living life normally and since Sunday I ve been pole axed ! Nausea, vomiting ,wracked with joint pain and generally feeling horrific! Never mind- onward and upward!
