Life with cirrhosis : Just wondering if... - British Liver Trust

British Liver Trust
17,809 members โ€ข 9,204 posts

Life with cirrhosis

Just wondering if any people in the group feel like me!..I tend to see my cirrhosis as long as it's stable as not being a problem..I never consider myself as not being healthy!

I did go through a difficult time with my journey through liver disease but despite it all never considered myself as ever been ill as such!..yes got all the symptoms low platelet count bleeding and bruising sleep issues and a few small varacies but I still feel that this is all just part of cirrhosis and just get on with it!

Maybe in denial but feel as long as my liver is doing what it should then I just think I just get a little tired quicker than others my age๐Ÿ˜„

Wondering if there is any others that feel like me??

For me it's just a set of symptoms rather than a condition and get on with it feeling no different from anyone else!

23 Replies
oldest โ€ข newest

Sorry but I'm a glass half empty. Unfortunately I can't seem to get over it and am constantly beating myself up for being so foolish. It is said there are no warning signs but you have to agree that it was wrong of me to believe I was immune to ALD.

9 likes
Reply

I think it's because most people actually enjoyed themselves in the early years of carefree drinking, before ALD, that this is so. Guilt is a powerful enemy.

Others (like me), who got Hep C from a transfusion and were later diagnosed with cirrhosis, may not feel the same sense of shame, but, even though l was only 13, I still feel regret, and desperately wish another choice could have been made for me. I fantasize that, in a moment of clarity, l refused to let them give me that tainted blood.

I think this is only human, we want to think somehow that we are in control. ln my heart of hearts l know that we are not. We are all imperfect and make choices based on what we know, and can't know, at the time.

8 likes
Reply

You can stop beating yourself up though. Just stop thinking that you ought to feel ashamed. I don't agree with you that it was wrong of you, or anyone else, to believe anything. It can't be wrong to believe a thing. We may be mistaken at times for believing, but not wrong, not ever. Be pleased with where you are compared to where you were. It will feel good. You deserve it.

3 likes
Reply

My husband is definitely the same as you & I'm really grateful. If you feel well then it's great to be positive (I am still learning how to let him get on with life without being over cautious all the time though!)

8 likes
Reply

Yes, I hate to admit it but I feel the same as you. Now, I do have on my mind the fact that I have cirrhosis 24/7 and it makes me sad but there is nothing I can do to change that.

3 likes
Reply

I fell ill about 18 months ago and tbh its been a bit of a roller coaster emotion wise. Been really happy then

nothings got worse or changed and I have hit despair.

Over last month or so I have been in a good place and am enjoying the life I have. I have done a lot more since being diagnosed than before I was, its like I have a yolo (as my kids say) attitude, when you have such a shock being diagnosed and all the rubbish that comes with it anything else seems like small fry.

Anyway guess I am trying to say I am similar to you in that I know its always there but I try my hardest not to let it take control and to enjoy life

6 likes
Reply

Well...

I have alcoholic caused cirrhosis. The diagnosis came as a shock. I drank too much, but not the amounts you would expect, even my hepatologist first thought there had to be other explantations. Today I'm living one year and a half without alcohol. I just stopped, no therapy, still it was very hard, especially as I was in a bad state, very weak and such. I'm living on my own, so I really had a very hard time, with all the symptoms, and no emotional support. I cried a lot. So today I wanted to concentrate on having a good, nice day. Finally most things are better, I'm so thankful for life, and especially for life without that poison. Well, a relative of mine just took my special day as an opportunity to tell me once more that it's only my fault to get I'll, that addiction is not a disease, I "just wanted" it that way and now I simply have to deal with the result...

This is just one example.

For me, it would be far easier to deal with cirrhosis, if people were able to show some empathy. Even without talks like this afternoon, regret and guilt are my major feelings.

I think there are so many ways people treat their bodies wrong: why seems everybody so focused on punishing especially alcoholics??? A former teacher of me has had lung cancer. He was a very, very heavy smoker all his life. I never heard people saying all the things I had to listen to...

Besides from that, I also have a nearly paranoid fear of liver cancer. Once I had to see another hepatologist. He was one of the "tell people the TRUTH, as hard and directly you can!"-team, he checked me for varices - I had none - and he said that almost in a disappointed way. Next thing he told me was: But you know, most people with cirrhosis get liver cancer!

Thank you very much..... Sometimes I feel like people don't think living with cirrhosis is punishment enough.

Sorry.... I really feel bad today. ๐Ÿ˜•

10 likes
Reply

Hi nina

I hope you now treat that relative with appropriate disdain. What a horrid person. Ignore them.

You have done so well to give up alcohol with no professional help - Good Job ๐Ÿ‘. I did the same but was so lucky because my wife also gave up alcohol in support of me - even though she, medically, had no need to.

Try try try to ignore those ignoramuses who make sanctimonious comments to you. A Consultant told me last week that he doubts that there are many working adults that stick to the recommended 14 units a week!!

Hope you keep as well as can be and continue to enjoy life.

Miles

6 likes
Reply

Wow Nina. You have to wonder about people like your relative, what gives them the right to pass judgment on anyone? I bet you can think of more than one way you outshine, are stronger and more compassionate than them. Don't let them ruin your night honey.

5 likes
Reply

Ignorance is no excuse. Just recently had stated to me for third time from individuals. "If I was in your shoes I'd just carry on, sure the damage is done." On the dreaded C point friend if mine is in recovery from throat cancer. Now he looks dreadful compared to me, not being vain. But he continues to drink & smoke. His Consultant told him to get the Guinness down to build him back up. Well?

1 like
Reply

Nina, my heart goes out to you. Itโ€™s 8 mths since I had any alcohol, I didnโ€™t have therapy just the brutal diagnosis ( which wasnโ€™t a shock if I am honest) of cirrhosis. But I had and still have a supportive ( long suffering) husband by my side.

To be on your own and achieve what you have Nina makes me be in awe of you.

Alcohol was my escapism from all sorts of things and again in the spirit of being totally honest, I love being ever so slightly drunk. I love the taste of an ice cold glass of bubbly and I suppose I always will. But I have come to realise, some may say late in the day, that I love life more.

Stay strong Nina, you are amazing to be where you are and as difficult as it is, realise that you are a better person than those who judge so so quickly. I have never even held a cigarette but that hasnโ€™t stopped me having a growth in my lung not related to the cirrhosis.

Thank you for posting Nina, youโ€™ve made me want to be a nicer person too.๐Ÿ‘๐Ÿป

3 likes
Reply

Braveheart, thank you for your nice words!

Take good care of you. And always believe in all the good things that come to you with not drinking. ๐Ÿ™‚

2 likes
Reply

Well, just phooey on those people.

Have more good days than bad - pat yourself on the back because you have quit drinking and have found strength in yourself.

My husband is the one with cirrhosis. Yes, I wish he had quit drinking years ago, but it did not happen until his diagnosis. So it goes.

It is fairly easy to say ignore those who try to make you feel bad and hard to do that, but when you have a quiet moment and might be feeling bad about what someone said remember that you have quit and that person has absolutely no idea of everything it took to actually do that, so many hear the same words and still do not manage to stop. You are strong and should be proud of yourself. If you can find a different doctor that one sounds like an absolute pill.

Best wishes,

Mary

2 likes
Reply

Well said Mary as per.

We would call that doctor a pillock over here - guess you save on a few letters ๐Ÿ˜.

Miles

1 like
Reply

Thanks for the answers!

When push comes to shovel, I just had an ambulance at my apartment complex, they took somebody to hospital. Some things as that can get me further down.

I also don't understand why alcohol, a poison! is thought to be so normal, harmless, just your everyday "fun". Why are there horrifying pics on cigarette boxes in my country, but somebody as me is pitied, or even forsaken...

My disease had also changed my social behavior. Although I feel better, and could do things, I prefer to stay at home. Whenever I answered the question: what kind of disease do you suffer from? And I tell them, I always got that "stupid drinker, she should have known better!"-look.

The only one never judging me is my hepatologist. She has a sister who's dealing with depression, she says that addiction is just the same, it's something you don't do on purpose (her sister couldn't care for her child, and people criticizing her for being just lazy). It's not something you choose to do and enjoying it and afterwards whining about the outcome... I knew I probably shouldn't drink at all, I always had a bad feeling about it, and I seem to have a very sensitive liver (is there such thing??? I also cannot take pain killers and such, even as a teenager I could never take them). But: at one point I suddenly couldn't stop it anymore... For me, finally being able to live without the poison that destroyed my body, soul and life, still feels like a miracle. And yes, that's something nobody will ever be able to take away from me!!!! Probably it was the deep instinct that resuming to drink would have meant death for sure.

4 likes
Reply

Pitied for never bring able to drink, I forgot to include that. Certainly not being pitied to suffer from a potentially life endangering disease, o of course, as I seem to deserve that. ๐Ÿ˜’

1 like
Reply

NinaNon - don't let envious people get you down. It is envy that prompts that nastiness, envy that you are a lovely, strong person, who didn't take risks for the hell of it, but for some reason that doesn't matter anymore, and is none of their business.

They have lived lives that they regret and it makes them sour and spiteful. Pity them.

Please find Randy Newman on YouTube, singing "Short People" and have a good listen to him send up bigotted sad people. It makes me laugh out loud all by myself.

Be kind to yourself. And like Threesmiles says, ignore what they say if you have to have contact with them.

End your day like you planned to start it, feeling good about yourself xx

3 likes
Reply

After reading all these answers I suppose it does effect people in different ways!

I contracted Hep C from my Egyptian husband who was vaccinated as a young man for bulharzia and they used the same needles for multiple people..he never knew he had Hep c until after we married and he started getting symtoms of liver disease..he went on to develop cancer and had a liver transplant

After 7yrs his Hep c attacked his new liver so he went on to have 3 liver transplants!

I never ever considered myself ill even when I was told I had cirrhosis..suppose I was busy concentrating on my husbands much more serious condition.

I just don't really think about my cirrhosis as much to worry about anymore as I cleared my virus and I'm positive about possible reversal of my cirrhosis in time..but I guess after reading everyone different stories it's not that easy for others that have ongoing conditions to deal with diagnosis of cirrhosis.

2 likes
Reply

Wow thatโ€™s a fascinating but scary story. Fancy your husband having to go through all that poor chap....And of course you must have had a very hard time too! And now your own problems. I do hope you remain positive and in โ€œcontrolโ€ of your situation!

Good luck ๐Ÿ‘

Miles

3 likes
Reply

Thanks Three smiles I'm just good at getting on with things and trying to be positive ๐Ÿ˜„

I suppose after all these yrs of dealing with my husbands problems I have learned to get on with life and unless problems crop up then just forget the word cirrhosis!

Not just as easy for others that have ongoing progression of liver disease issues though!

1 like
Reply

I am really pleased to hear that you are coping so well in this difficult time.

Indeed I was like the others - where my problems just got worse and worse despite giving up drink - even then you (me!) just have to try and keep this glass half full attitude- but that becomes nigh on impossible as time progresses and the disease takes hold with horrible side effects. But of course you will have seen all that with your husband โ˜น๏ธ.

Miles

3 likes
Reply

Mmm sorry I am glass half empty at the moment and I think most of the time. Then I beat myself up and tell myself to get a grip and be glad Iโ€™m alive and there are much worse off people than me but it still grates at me.

I am not in my home country so the friends I have here donโ€™t know me very well they just think Iโ€™m really boring, even though I am the first one up for a party or doing something new. I am seen as the sensible one, (just because I donโ€™t drink) Im the first person they come to for advice on anything and again to ask when they need help with something but very rarely invite me out. Yet people that have no idea about my past think Iโ€™m normal. I feel like cirrhosis is a stigma, the elephant in the room. And if I have to eat chicken and veg one more day Iโ€™m definitely going to eat a full tub of ice cream ๐Ÿ˜‚. (Hence my post about food)

Sorry just a bad day and I am very lucky in my life and the life that I am living right now.

Itโ€™s great that you see past it, Iโ€™m sure I do really, just a bad day today ๐ŸŒป

3 likes
Reply

I can understand that. I feel fantastic. Apart from the medical profession, only one friend knows about the cirrhosis diagnosis. She was incredibly supportive. We went to school together and I was very close to her family. Her non-judgemental stance means a great deal to me. Yes, I have to get up in the night because of the Spironalactone (spelling!) and I am still a bit scrawny due to muscle wastage. But I am getting there with my weight and fitness. And despite my marriage being on the verge of breaking up, I remain firmly in the glass half full camp. It probably irritates the hell out of people and would more so if they actually knew what I am facing. Life is too short. Top that glass up. With ginger cordial and sparkling water, obviously!

Good luck, love etc to all of you.

1 like
Reply

You may also like...