Back again....... with shame! - British Liver Trust

British Liver Trust

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Back again....... with shame!

Hey___ profile image
13 Replies

Hey all!! Wishing you all a good evening. I guess my post says it all. My reluctance of sending a post was shame as I am recovering from a relapse but now sober again. I won't elaborate on the extremity of this relapse for the respect of the sufferers here without alcoholism....it was just horrific!

I have however avoided Decompensation again but after 10 weeks now I am still picking up the pieces. My problem is, I am living on my own and struggling to do this. I accept that most friends and family struggle with my condition and can't comprehend why I relapsed. I know...I burnt out with Cirrhosis.

My main concerns are HE and extreme exhaustion. My memory is poor and my mobility is not great. I have made decisions that wasn't right of late but managing to just 'hold it together.' I thought HE would disappear now that I am compensated!

I have the fight back in me but in no way can afford to not manage with Cirrhosis again.

On a lighter note I wish you all strength and happiness. Mark

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Hey___ profile image
Hey___
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13 Replies
Aotea2012 profile image
Aotea2012

So you’re human. Not a great party trick to start drinking again, but you realised you needed to stop and did. Where’s the shame in that? If you’d said ‘sod it, I can’t cope with this cirrhosis game so I’m going to stay on the bottle’ then that would be a different story, but you didn’t you did something about it. I’m assuming you are getting treatment for the HE with lactulose? It’s one of those treatments that needs adjustment depending on your situation. It may be worth giving your specialist’s secretary a ring to see if you could get advice on your medication if it’s not helping. Try to be kind to yourself. Take care.

Hey___ profile image
Hey___ in reply toAotea2012

Hi...yeh I know it wasn't a great party trick or a great party either! And I think I am still human but don't feel it. To be honest I nearly thought sod it!!...but I didn't and need to start being a bit more forgiving to myself.Thanks for your advice on Lactulose as HE is doing my head in...literally!! Trivial Pursuit at Christmas was a challenge!!! Take care too.

DavyGravy profile image
DavyGravy

Hi Mark

As Aotea has pointed out, we're all human and humans make mistakes. Unfortunately as time goes by, we get fewer mistakes to make. :(

The thing that always stands out whenever I read other peoples stories is the invaluable (and unenviable) role the partner (or family and friends), have in maintaining and improving the health of someone with cirrhosis. These people are there as an on site 24/7 support/ nursing/ cleaning/ cooking unpaid worker system. When they are not looking after the person physically, mentally or emotionally, they're probably on the phone chasing up appointments, lab results or seeing whether the latest problem needs a visit to A&E. It is a tough job. On top of all that they have to be a conscience and a guardian. There probably should be an honorary mention in the new years honours list for carers. 🎖️🏅🥇

Living on your own Mark, I think you are doing two tough jobs. It's not easy to be the one with cirrhosis and also be your own support system. So do not beat yourself up. But for your own health you must be as determined as you can be to prevent another relapse.

I know familiy and friends have their own lives to live and cannot be there 24/7 but perhaps if you spoke with them and asked... I'm sure they would be happy to come round at any time you felt the urge to relapse again.

If you can get someone around to help get you past those moments, I think you will go longer between those urges.

Take care of yourself.

Dave

Hey___ profile image
Hey___ in reply toDavyGravy

Hi Dave..Thank you for your kind message. And I wholeheartedly agree that support is needed and I can't do it on my own which is tough to admit but I do need to 'throw the towel' in and stop telling myself oh it will pass!!

I have friends on the phone because I moved away for my son. My dad died recently and I have lost my mum's mind to Alzheimers. What can I say other than its hard!!🤔

With regards to urges, I haven't had any since I stopped. Previously I have got through long periods of sobriety but this time I need to get it right as another relapse would be dangerous.

Take care too. Mark

Zukosmile07 profile image
Zukosmile07

Alright Mark.... I did it on my own, I moved back with my parents when I was really bad (unhealthy). I couldn't stop around family. There was too many I told you sos (😆) and for some reason the old school way with my parents was having a go. Telling a grown man off 😤. That helps no end when trying to stop, also I'll confide in my mates.... "Ok Dan where do you want to meet cavalier or mason's"🙄 You have to do most of it on your own but that is where I found my dependant self and went a long way to recovery. My family new how dangerous my condition became (I'm always smiling) they can't and wouldn't deal with the fact I was dying, also I didn't want to make them go through that because of my being selfish.

I have to say this though mate, you can't keep getting away with it.. next time could be liver failure. If you don't like pain then stay away from that.

This forum helped me throughout some difficult times. 😊 Chat on here not to a drink....

I am grateful Danny x 😀

Hey___ profile image
Hey___ in reply toZukosmile07

Hi Danny.. alright mate? You sound upbeat and on top of things and it is so good to hear people who are winning the battle. By the sound of it; you have done amazing!... keep going!!👍

To be honest I lost the battle but I am pulling it back to a point but I do struggle with Cirrhosis but I will fight it again as I don't think there is another relapse in me.

This site did help me in many ways through some really tough times and there are not many people out there who understand the 'Liver Thing!' but I know I did the right thing by coming back.

Be grateful and be proud! Mark

Zukosmile07 profile image
Zukosmile07 in reply toHey___

Hahahaha 😆 the liver thing..... Tell me about it. I thought I was going insane when I found myself having a conversation with the old one in hospital... Yeah I was pleading with it to stop grumbling and offering it something nice to eat if it chilled out. (crazy I know, I'm not deranged, Honest) I was bloody desperate because of the pain that day (I could of ripped it out of me) was unbearable.Anywho, you should know, one day you feel fine and the next "well you know" cirrhosis lurking in the background ready to pounce all because you are in a bad mood.

I also know that saying "don't do it again" doesn't work so maybe thinking of yourself lying on a operating table staring up at a surgeon who is looking for their key's.... Hahahaha 🤣.

Be safe buddy, liver failure really does hurt.... Danny x

Sunflower2021 profile image
Sunflower2021

Hey Hey, . I wondered where you had gone. Sorry that you have been feeling this way and I am glad that you are back. It is lonely in itself having this horrible condition, but please don't feel lonely you have friends here that you can always talk to 😊 Xx

Hey___ profile image
Hey___ in reply toSunflower2021

Hey Sunflower. I am really pleased you are still here and clearly doing well!! What can I say?!.. its been a Rocky Road to say the least but I am pulling something back?!

Cirrhosis sucks! But living with it became more of a challenge that I could comprehend and struggled with it. I had many people saying 'you are doing so well' but physically and at times mentally I was in trouble and I didn't admit it.

I am looking forward to seeing this year out and put it behind me and move on. I am seeing the Matrix with my son on New Year's Eve which I am thankful for! Xx

Sunflower2021 profile image
Sunflower2021 in reply toHey___

It's good to see you back 😊Cirrhosis is awful to live with but just have to plod on with it. People that know I have it, which isn't many also say how well I look etc but deep down I struggle to put it to one side.It's there, and always will be, I try and be normal as I can but not entirely sure what normal is! Just keep busy and keep positive. I do have very low days, I know exactly how you feel,but just keep smiling 😊. No point crying over spilt milk x

As you say, put this year behind you and start a new year, set yourself goals , tell yourself every morning 'I can do this' there is no such word as can't, be strong 💪 you know you are and so do those that care about you x

Your have a great time New Years taking your son to the cinema 😁I will never understand the Matrix. Isn't it about where humans are batteries for the earth or something like that? Lol x

Hey___ profile image
Hey___ in reply toSunflower2021

Hey Sunflower... thanks for your message btw. It sounds like you are managing really well with this Liver Thing!! Go you!

Me..I have these days where I think I can do this!... but there are these other days where I struggle through it. I do keep smiling😀 but life has been as tough as old boots!

I managed to get my mum out of the care home for Christmas for 6 days. Her Alzheimer's is so bad now that she didn't know it was Xmas or really who I was. I juggled it and gave her the best time I could. My son has been an angel of late. He is 14 and is amazingly understanding!!😄

I will put last year behind me as you said!!..I have goals too and I just can't afford to cave in again.! I will persist and smile like I always do for 2012. I just know I need advice sometimes. (Have you tried ringing a doctor of late??)...😶 I am pleased to be back on here as it is the only place I could connect with people that know!! My brother asked me to go sea fishing when I was decompensated..😁..I thought I would end up as bait!!

Keep going Sunflower!! Btw...the Matrix???...I still dunno!!..lol. Mark x

Tommy62 profile image
Tommy62

I'm in the exact same boat as you everything you say is me I'm in an ongoing battle myself goodluck to you I love on my own that's a big problem to Godbless ❤

Hey___ profile image
Hey___ in reply toTommy62

Hi Tommy...I know mate. I guess it is marathon and not a sprint. I haven't all the answers to managing this which is why I am here. And reading how people live with their condition has been and will be of huge help. Look after yourself. Mark 🙏

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