PBC Foundation

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Hubby just doesn't get it!

I have been diagnosed with PBC for 20 years now. I only found out 10 years ago but that was my own fault and another story. I met my husband 10 years ago and we were together when i found out about PBC and have told him the ins and outs of PBC till im blue in the face. I have given him all the literature I can get my hands on, made him watch videos and blogs but he still doesn't get it.

I have recently (since Christmas) become more tired and feel a lot sicker than I usually would. I sleep a LOT these days averaging 10 awake hours per day half of these being at my work. Work is in no way a problem as I reduced my hours to suite my needs and its perfect. I drop my 5yr old son off to school in the morning and collect him wen im finished work. then we get home and ill make him snacks then sleep for a few hours before I get up to make dinner. Its a routine that's working fine but my husband isn't happy.

I do have more energy at the weekend as i can chill at home and have a few more hours with my family which is great.

Hubby is getting frustrated at the amount of sleeping im doing and the quantity of medication im taking. he said the other day this is going on far too long and something needs to be done about it. Says im taking too much medication and it couldn't be good for me?? And that its affection everyone! He said this is ridiculous!

I had an awful bout of sickness during the week there were it woke me up in the middle of the night and I nearly passed out when I went for a glass of water. I felt so sick in the morning that I said to my hubby I wanted to stay at home and not go to work. he said and I quote 'sure whats different today from any other day, why is ur sickness so bad today? get up and get on with it, sure you only work a few hours anyway! the sickness will pass'

I went to work but ended up having to go to my GP's office for an antisickness injection straight after work and my consultant at the hospital has had to change my cyclizine and has prescribed me Ondansetron. I collect my script for this today and pray that I get some relief as I am nauseous all week and have barely been able to eat. Im drinking lucozade which helps a bit, don't know why but guess my body is used to cyclizine after 10yrs!

Hubbys lack of understanding or ignorance is driving me insane and I cant cope with how blasé he is about this. I guess he thinks in his head....shes taking medication she should be getting better! Im not looking for sympathy from him just support. And im not getting any!

I was shocked but not surprised, I have a notion he thinks this is all in my head as on the outside I look great. I explained to him AGAIN that PBC is an incurable disease and that the medication I take is to help my liver function properly to slow down the disease and prolong my life. I take Ursofolk, folic acid, omeprazole, cyclizine, antihistamine and Fluoxetiene. I also have systemic schleroderma which was an additional diagnosis a year and a half ago and Arthritis in my spine.

I take my Urso and folic acid in the morning and I throw in a capsule of oil of primrose as I also have arthritis of the spine. These I take in the morning. My folic acid levels were low and this can contribute to fatigue.

At night I take cyclizine for sickness, fluoxetiene which can help the schleroderma and antihistamine (if I don't take this I itch and sneeze a million times a day) and omeprazole as schleroderma affects my gut. if i am sore i will take co-codamol but only one. I take these at night as they can make you drowsy so were killing me during the day as im tired anyway.

Think this is more of a vent than anything else. Just good to get it off my chest.......If you are reading this to the end then I thank you..........just having a bad week, love to all.....Suzanne xxx

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25 Replies

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Hi Suzanne, sounds like you are having a hard time, I have no answers for you but thought I would just write to let you know you are not alone.

Like you said most of us look fine on the outside so it is difficult for others to understand this horrible condition with lots of different symptoms, if only they could walk a mile in our shoes!!

I sincerely hope you find some way to get the support you so desperately need.

Sending you lots of love.

Debbie.

Thanks Debbie, my mum is great and my 20yr old son is great too. Hes taking about getting his own place with his friends tho and im scared to let him go as I really will feel alone then. But I will be fine, just entering a new phase in life/illness and its kinda scary. Brave face, find the positive, onwards and upwards....love to you....Suzanne xxx

Hello suzmcintyre08.

I do understand your frustration in lack of understanding, especially on your husband's part regarding having PBC. I think for the majority of us looking so well and appearing almost normal (moreso if you are fortunate not to itch or have fatigue - I itch, have since 2010 which started me on to the road of PBC diagnosis), it can be difficult for our families and especially our partners.

I had only been remarried 10 months in 2010 when I started to itch nearly all the hours of the day. Took myself off to the GP and 9 months later was informed I had PBC. I was working full-time back then and in a rather demanding job (acting Shop Manager as my colleague was sick for 6mths) and found my husband didn't take it seriously at all. He let me down badly at times with his lack of concern. It was only after I was given the diagnosis relayed via my GP it started to sink in a bit but it was my first visit after starting urso when I went back to the hospital to see the consultant and he did speak a bit about PBC in front of my husband and then ended with the words that it 'can lead in some cases to liver transplant'. The words, 'no cure' also made him sit up. I never informed my husband about transplants prior to going to the hospital after diagnosis. I think certain things are best coming out of the mouth of the professional. I was fortunate that the consultant did have sympathy regarding PBC causing fatigue that I did have in 2010 (but at some point 2011 it vanished and I don't tend to have that, tired yes due to broken sleep with the itching).

I did give my husband the option at diagnosis of leaving me due to us not being together very long (though it was a connection that had started 12yrs prior) as I had experience of living with someone who had something that would never go away (my former late husband).

I think you have to try to come to some arrangement with how you are going to continue getting on with life together and spending those precious moments as opposed to letting the PBC in this case take the control of it all. I think when a partner comes to some degree of understanding about it then you can start to move on better. There are certain things now I feel that I cannot do anymore, nothing that is life altering (I couldn't now for instance go to see a film at the cinema, wouldn't be able to sit in the seat for the length of time as I tend to feel prickly when sat about doing nothing) but it can be a case of it getting across to your other half.

Is it possible for you to have a GP appointment and your husband can go along with you and then leave the GP to go on about PBC or perhaps your hospital appointment. It could well be that your husband is feeling down about it all at the same time and doesn't know how to adapt better to it all.

If you haven't already request the free dvd all about PBC from Liver North. I'll pop the website on for you, easy to see as it is on their Home page for you to click on. I requested mine several years ago now and I haven't actually watched much of it. (I'm one that decided long since I'd deal with things as and when with PBC and not spend time worrying about them as they might never happen.) My husband did watch the dvd on his own as he said he had done so when I wasn't around.

Could any of your medications be clashing or causing you to feel nauseous although it can apparently be a sympton of PBC. I do think once you are in a routine with the meds you take and try to gather some semblance to coping with the PBC then you never know things might just come together that much better.

Sorry I can't be of more help but hope I have put some ideas across. Best wishes.

livernorth.org.uk/

Hi Peridot, thank you for your lovely reply, it has been very comforting. I got that dvd a few years ago and have watched it and himself has also watched it. im thinking of bringing him along to my next appointment with my consultant. Also his brother and sister in law are both nurses and iv asked them to speak to him to see if he can understand better. Its a difficult time as I feel iv come to a crossroads and don't know which path to take.

One day at a time for now and see how things pan out......Suzanne xxx

Hi Suzanne,

I had to reply to your post because it sounds all too familiar. I want to say, men are dumb. But, that's not nice and I don't want to offend an entire gender here! And to say that men are dumb is not completely true.

(To the men and feminists and gender rights activists out there, please don't take offence to the stuff I'm about to say - its just generalized comments from my own experience that do not apply to anyone in particular).

It has been my experience, and the experience of many of my female friends and relatives, that a lot of times, husbands just don't respond in the way we need them to when wives are sick. The best way I can explain it is that they are wired differently.

First, their attention span is typically way shorter than a woman's attention span. If it takes more than 1/2 a sentence to express a fact, 9 times out of 10 my husband will miss it completely. I can't count how many times I have had to say to my husband, "Stop. I wasn't done with my sentence and you have already answered me. You didn't let me finish and that is not what I meant at all. Please listen to the entire sentence before answering." If he is in a good mood, he listens to the entire sentence and tries again. If he is in a bad mood, he says I'm impossible, storms off, and watches football. I think men and women evolved with this difference because you have to respond quickly as a caveman hunting in the woods. No time to sit and have deep thoughts. Got to be quick and move fast and make fast decisions while on the hunt. I don't know if this is true at all, but it makes me feel better to have this visual in my head haha.

Second, most men tend to be non-verbal. Women like to talk through things through, express feelings, read about it, research, see other people's perspective, gather lots of information and process it. Men usually prefer action. For example, when a man gets lost when driving, he doesn't stop to talk to someone and get directions. He likes to drive around and keep moving until he figures it out. What's the first thing men do when they have to put together a piece of furniture? Throw away the instructions and start jamming stuff together. So, if your husband is not "getting it" from videos, talking, literature, etc. I'm not really surprised. Illness is not something he can see or put his hands on. Its abstract and there's a lot of picturing things in your head in order to visualize it. Things that you have probably never seen in real life, like bile ducts or the immune system. Not that men can't do these things, but men tend to be more concrete thinkers than abstract visualizers.

Third, people express caring in different ways. This could be a personality thing more than a male vs. female thing. There's an explanation that is somewhat decent, the Five Languages of Love or some variation of that. Google it and there's a bunch of articles that go in more detail. But its basically that people love and feel loved by 5 main ways: Words, Acts of Service, Gifts, Quality Time, and Physical Touch. While I like to hear my husband say that he loves me, he likes to do little acts of service to show he cares. So what happens is that he mows the yard and is disappointed that I am not impressed and smiling and exclaiming "thank you honey you are so sweet also I did all your laundry!" Meanwhile, I am sulking in the house because he has been outside for hours and has not said one nice word to me all day. I didn't recognize that his Act of Service was his way of showing he cares (its just chores, right?), and he is just a non-verbal guy.

So, the fact that your husband recognized and noticed that you have concrete changes - sleeping more and taking lots of meds - and he pointed it out and wanted to take immediate action to fix the situation, that might actually be a sign that he cares a great deal and wants to somehow figure out what Act of Service to perform to make you all better ASAP. It comes across very rough around the edges and abrasive, and its real easy to feel like he's accusing you of something or minimizing the problems. At least, that's how I always end up feeling.

If I were in your shoes, the next time he says something about you being sick or sleeping or tired look at him and say, if you really wanted to help me feel better, you would ________. Fill in the blank here. It could be "stop yelling at me and come back when you can have a calm conversation" or "drive me to the doctor Tuesday" or some action or task so that he feels in control of something and feels he is helping you come to a solution to fix things. There might not be a fix. There really is no cure. But his anxiety might be released by being able to take some action.

It might help if you explain the "action plan". Put your hand on his shoulder like you're in a football huddle, like you are teammates before a play. Tell him, look, this process is going to go in three phases. One: I gotta get over this nausea spell this morning. That means rest and this stuff that helps my stomach. Two: We get these meds straight. Now that's gonna take a couple weeks, and a few visits to some docs. And Three: My body gets adjusted to these meds and we ride it on out from here. Or something like, that. Anything, just as long as its short and action oriented in a way that he can participate. And then he knows that some of this is a "phase" that has to pass. Its temporary and not forever. Hopefully the nausea and medications are a temporary thing, even though PBC is not.

Well, anyway, sorry for the long reply. It was a bit of a vent for me cause I've been going through some similar stuff. Good to get it off my chest, as you say I hope I didn't offend anyone!

Hi I'm a man I've been diagnosed with PBC for 3yrs now but the urso I take keeps it stable my wife didn't understand because there's nothing to see but because it's stable she says see I told you.

Hi Enalynot, sounds all to familiar. Its horrible to have this disease and live with a partner that just doesn't get it. I too am stable blood wise atm but my tiredness has escalated drastically. Which confuses my husband even more. Iv given up explaining it to him and mentally im doing this on my own. Iv great family and friends who are all there for me if I need them. Be strong and know that you are not alone in this and we here, all of us understand and will always be here to listen and support you.......chin up my friend, Suzanne x

Hi Suzanne I do feel for you. To live with a husband that clearly does not want to understand your condition is very selfish of him. It is a pity men do not tend to get this horrible disease. Just know, we out here, all over the world, care about you, as we are in the same boat. Good luck! You need it!

Hello,

It can be difficult if others don't fully inderstand how unwell you are feeling, particularly if outwardly you look pretty well.

I think most of us understand this and keep trying to gently plug away with explaining, in different ways, how PBC can affect you.

Hi I'm newly diagnosed with PBC. I don't want to sound horrible but your husband needs to get his head around this and very soon it's not like you have just got this illness and he still can't take it, you know all this stress you are under is also not good for your liver and can be making you feel worse because of your selfish husband. What's he like when he is ill. I do really feel for you my ex husband was like that. That's why he is my ex lol. Your going to have to try and stop worrying I know its going to be hard you didn't give yourself this illness but its you suffering. If you can't go to work than you can't go your husband wil have to understand that you just can't go. Much love to you and take care xxx

Dear Suzanne - so sorry to hear you are suffering and not just from the PBC. It is really important for your peace of mind that the people who you look to for support are supportive.

You might want to consider showing your husband these posts - he may get more insight if he reads what others with PBC are saying.

It must be difficult for him and others to understand when we usually look well but we who suffer from PBC must show some solidarity because we are the only ones who know what it feels like.

So glad you get support from your mother and your son. Let us know how you get on.

A big hug from me. Diane PS My daughter is called Suzanne

So sorry to hear you are going through the mill at the moment. I am fairly newly diagnosed myself and with few apparent symptoms at the moment. Long may this last! Although my husband has also watched the DVD from Liver North, he also seems in complete denial that I have anything wrong with me! Maybe it is a man thing or maybe it's their way of coping. Either way, I sincerely hope that your husband starts being more supportive soon. In the meantime, vent away! Michele x

Hello Suzanne,

I am very sorry about both how the pbc is affecting you,and the difficulties you are having.

I also have a disabling level of fatigue with my pbc, this has changed both my life and my families.My husband is very helpful but it has taken a long time for him to fully understand, and he finds it hard to accept that nothing can be done, I think men often feel this, but you need and deserve your husbands understanding and support.

I also find the fatigue I suffer and the limitations of it frustrating and it takes time to accept The fact that people think because you look ok you are ok is very frustrating,even this week a distant family member said how well I looked and made it out I am lucky because I work part-time!!!!

A few years ago I found an article in the bmj called A patients journey, fatigue in primary biliarry cirrhosis.This summed up exactly how I feel, I cried when I read it and then emailed a copy to my husband and adult children, this helped them understand, now if I am tired I do not pretend.

Have a look at the article it may help you.

I hope things get better for you.If you can afford it get some help in the house, be honest and do not feel guilty about how you are, you didn't ask for this, you can only do what you can do.

And when you get a rare good day try to enjoy it.

Jane.

Hi Jane, how can I get hold of the article? Is it possible to send me a kink ir enail it to me please? linda.barnard7@gmail.com. Thank you

Hello Linda,

I found the article by searching: bmj a patient's journey fatigue in primary biliarry cirrhosis .Or else try this link bmj.com/content/345/bmj.e7004

I hope you find it.

Jane

Hi Suzanne, the article that Jane1964 recommends really helped my husband & family understand too. I doubt it will transform your husbands understanding but it might just make him realise that you're not the only one with PBC who suffers from severe fatigue and its outwith your control. You are amazing, you continue to work and look after your family despite PBC. I've attached the link to the article. I hope it helps. Take care and keep your chin up x

doi: dx.doi.org/10.1136/bmj.e7004 (Published 22 October 2012)

Unfortunately Men want an instant fix. I feel for you.

Hang in there. No answers unfortunately.

Stick to your routine it helps you cope. Listen to your body. If you need the extra rest take it. I found that I function much better if I rest when my mind and body scream for it.

Maybe a psychologist can help. Even if you can't get him there go yourself.

Good luck!

Just wow, thank you all so much for your love and support. I am truly touched reading your kind words gives me hope. I'm honoured you all took the time to reply and I will use these posts to keep my spirits up. Here's to us all sticking together..... Love to you all, Suzanne xxx

News casts are informing the public NOT to take prilosec,omeprazole because research indicates a 44% increase for dementia! Look it up.

So sorry, we need that support!! It's the way it is and we are not going to be cured!!!

Hugs. Remember wee are here!!!

OH I'm so very sorry to hear that he's not supporting you! This is when you need people around you who will understand and support you - I pray he will come around and learn more about your disease. Does he go to your specialist with you - would it be worth while taking him to see your specialist and having him/her explain it all to him - maybe he'll "believe" it more...

I've only told my immediate family and a couple of close friends. I don't want my son to know yet (he's 10)..I'll tell him when I'm sick to an obvious extent but not too sick to do things with him that he's going to want to do. But I told my immediate family because when I get sick, I'm going to need people around me.

My mom was supportive at the time of my diagnosis, but now that I have symptoms she's quick to tell me it is not from my PBC that it's something else. She seems to have a hard time accepting that it's affecting me. So I've given up trying - I know she'll support me when I'm really sick - until then, I won't share my symptoms with her.

It's hard not having the person closest to you understand - and I'm sorry you're dealing with that with your husband. I really hope it improves!

Maybe we can help.

It wouldn't be the first time a husband, child, carer has called us for info. As a son of someone with PBC, I know how it is to "see" (or more accurately not see) an invisible ilness.

We have helped many people in this situation come to a better understanding.

Your husband would be welcome to call. Everything discussed would be in confidence.

Yours,

Robert.

Hi Robert. I'm afraid I took him to the last conference in Belfast. Unfortunately it didn't work and he is now my Ex. But Thanx for the offer of help. Suzanne

So sorry to hear that, onwards and upwards chin up, take care. Sometimes better off without them! For 3wks i wasnt fit enough to get out of bed, no housework done, just about well enough to put a load of washing in the machine. Hubby gets out of bed, helps himself to breakfast, gets in the recliner n sits there with a tv remote until he feels hungry again! Not even as much as a drink was delivered to my bedside!! U know what, i just let him get on with it, and if im not well enough to wash and iron his clothes then he can do without!!! Time to take care of yourself and myself!! Good luck pet. X

Hi Suzanne, I haven't been on this site for months, and reading your story made me really feel for you. I'm sorry your husband is so not understanding; I'm fortunate that mine has been fantastic since my PBC diagnosis in 2012-ish. However, there are times that he struggles with it also.

One aspect that also interested me in your story, is your nausea and recent diagnosis of systemic sclerederma and arthritis of the spine. You could be describing me, as I was diagnosed with limited systemic scleraderma about 6 months ago, which is what used to be known as CREST syndrome. I felt just like you, overwhelming fatigue, nausea, inability to eat much with food feeling 'stuck' in my oesophagus'. I lost 11kgs in weight & it's still going down . With my diagnosis of systemic scleraderma, which I believe is a progression of PBC, I was prescribed Plaquanil tabs daily. I sat on the prescription for about 6 months before getting so down all I wanted was to leave this world behind. Like you I take numerous tablets daily which was why I did not want to add to the collection.

Eventually I decided to take the plaquinal and to my amazement, within 2 weeks I nòticed a difference. The fatigue after 2 years, has all but gone, I'm no longer so depressed, and feel like a different person with something to look forward to in life.

I wonder if your symptoms are arising from your Scleraderma rather than PBC. The Ursofalk had settled my fatigue & itching from the pbc down, but with the onset of ssc, they returned with added nausea. Have you seen a scleraderma specialist or a rheumatologist, as they may be able to help you deal with what could be perceived as a very depressing outlook for the future.

I do hope things improve for you. I know exactly how you feel.

cheers, Dot (from Australia)

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