Puppet on a string

Good morning everybody,

After a very bad night and the question how cirrhosis affects me which was raised on the board, I wanted to share my feelings these days. I'd be very thankful if you described how you feel.

As I've written before, I have cirrhosis due to consuming too much alcohol.

I'm extremely thankful, proud and happy to I finally can be myself at all times again, no wasted evenings, always a great clarity of mind. So this is the awesome part that's always present!!!

But: there is also the other side. As I now can live without that poison and even be happy, I sometimes shake my head thinking back.... Why was it so hard for me to stop, although I somehow sensed that it wasn't good for me???? And that's also always the thing that makes some particular relatives attack me. Their logic goes like this: if you are happy now without alcohol, then you can't be addicted. If you were, you would have to be envious and bitter now you aren't allowed to drink anymore.

That, the guilt, the regret, the thought "why so easy now, why not earlier" is really getting me.

Then there's my body. It makes weird things even my hepatologist can't explain to me.

I'm on Spiro daily, 50 mg. Everything is fine, then, out of nowhere with no particular reason, the swelling of the legs and feet comes back enormously.

One day I feel very active, almost healthy, next day I feel extremely tired and sleep all day.

I got my menstruation back, after going without for a year, but now (since January) it's absolutely irregular, sometimes weak, then super strong.

Sometimes I'm not hungry at all, then again I feel like I could keep on eating all day long.

As I've always been a person who worries a lot, my new fear is liver cancer. From what that other stupid doctor told me, it's only a question of time to get it. And I definitely can't visit my hepatologist three times a week to do an ultrasound!

My liver makes a lot of sounds, always after eating, but more, if the meal was high on sugar or fat.

I want so much to believe in the natural healing competence of my body... I do meditation, try to focus on motivating, positive words, stories, whatever, but I just have to hear it read one negative comment, I feel like all confidence and hope I've so hard builded up, crumbles down.

Sometimes it really feels like being a puppet on a string, and puppet player cirrhosis pulling my emotional strings 😕

Sorry for that long posting, but thanks of you read it.

[Hidden]

Hi

I'm sorry you feel do rotten. Could you show your family what you've put on here and that you are trying your best. Is there anyone you can talk to. I've got Nash caused from meds given to me from my Drs over the years. I know mine wasn't caused by alcohol but do understand that it is an illness. You have done remarkably well to achieve what you have. Take care of yourself Lynne

[Oscar21]

Aw bless you. I'm sure there's lots of members on this form that can tell the same story, me included. It's now 7 years since I drank, alcohol is a poison and one day in the future it will be widely known the damage it does. Just like tobacco!!!

I wake up every day and feel so blessed to see the blue sky and thankful that I am still here, when there's thousands who sadly have not made it.

Regarding the cancer, yes it's a big worry, but the Hospital are monitoring me and providing we have our scans and check ups, live your life. Anyone can get cancer and because we are regularly being checked, if it is detected, then I will deal with it. Try not to worry too much on the 'if' and focus on the 'now'. I know it's not easy, but life isn't easy for anyone.

Be proud of yourself, and look forward. We can't change our past, what's done is done, so don't beat yourself up sweetheart. Have you been offered counselling? I have, although I've not tried it, don't think it's for me, but the Drs say it's there if required. This may help you.

[ThreeSmiles in reply to Oscar21]

Nice approach Oscar - like it!

Miles

[sunnysmile in reply to Oscar21]

So love this - wise words as usual on this forum of friends x

[jazzjam]

Ooh NinaNon, I am with you on this apart from the family situation (which sounds dreadful and I would personally avoid them as much as possible, you don’t need that kind of negativity.

I am away from my home country and there is only 1 family member on my side that knows and 2 on my in law side. I have only had one comment from in law “do you think it’s because you’re father was an alcoholic” mmm, well he left when I was very young so I wouldn’t think so but I’m sure there will be some psychotherapist somewhere that would say yes.

Yes my feet and ankles swell if I’m on my feet all day even with forusimide and aldactone. I have gallstones, portal hypertension, a huge vein sticking out of my stomach that will never go. My cholesterol was high, I don’t know now. I have had pain in all my joints that seems to be easing. I did drop to about 6 stone 8/9 which is way too small for me and lost muscle so the build back up has been a very huge hill to climb (for me). I had fluid on my lungs and had a biopsy and 2 drains, they never found out what caused that although the typical expectation was it was my liver, the tests showed otherwise. I still have a hurt (not pain) where they went in, something to do with my rib cartilage. I am seeing a physio as the trunk part of my back is frozen rigid, they think from the time I spent sleeping and no exercise. I also went into early menopause in my 30s. Everyday I have some form of indigestion at the top of my stomach but I think the lasoprazole do more harm than good if you’ve taken them for too long (in my case).

The plus side is I had varices and acites and I don’t now.

The mad thing is I get excited when the lactulose and rifumaxin does it’s job 😂, all them toxins going.

I am happy I sleep well, I get up on a morning ready for the day, feeling good from that gets me past the bad days when really I am feeling sorry for myself and I need to take charge.

And of course I’m glad I haven’t drunk alcohol for 2 years now and I don’t particularly think about it or want it.

My two fears, liver cancer and getting early dementia of some variation due to the toxin build up, encephalopathy which I have mildly.

You did ask to describe how we feel, you’ll be wishing you didn’t now 😂. Although sometimes it actually is nice to feel you are not alone in what you are feeling 🌻

[ThreeSmiles in reply to jazzjam]

Hi jazz

Awww you’re in that awful HE boat - yukyuk 👎🏻. I had too many episodes to remember- but of course my memory has been affected by those episodes so don’t remember too much about that anyway - which is a blessing really. 😁.

Hope that the lactulose and rifaximin keep on working for you! 3 times a day target? In the end I had to use self administered enemas. To be avoided at all costs - but that’s a silly thing to say because it gets out of your own hands to a degree 👎🏻.

I think it’s brilliant that you sleep well - that’s great 👍👍.

I also think it’s good when we get honest posts about the reality of living with cirrhosis, however caused, so well said 👍

Good luck!

Miles

[Roy1955]

Alcoholism is a sober disease.

You only get "symptoms" when your sober.

Giving up alcohol does not cure it.

It makes it worse!

Get help and support with your new way of life.

Few understand that drinking is not the cause of the underlying disease known as being an alcoholic.

It's only a symptom, a very damaging symptom!

[Hidden]

Thanks for all the open and interesting answers!

I already feel better. I feel like I'm stabilizing myself the longer I'm away from alcohol.

At the beginning it was like this: first two or three days, hard, but not as hard as I thought. I knew I had to get away from it to save my life, so no other possibility.

The first thing was that my body got better, that's no surprise as I was in a really bad shape. My mind followed, my thinking got clearer, suddenly I was interested in all kinds of things again.

Emotionally it was a rollercoaster for a looking time. When I was still drinking, I was aggressive often, or I was in despair without no particular reason. In the end of my drinking time, I cried more than ever before.

After that, the first thing I noticed was the unexplained rage, anger, vanished. I remember one day I suddenly told myself: I'm not angry anymore... When was the last time I was mad without any reason, where did all the negativity go????

At the time I was still feeling very insecure though. It was as if I had to get to know me fresh from the start. Sometimes painful. My advice for all people still struggling: JUST accept those feelings. Alcohol numbs everything. Feelings sometimes hurt. But they won't kill you. Next time you feel sad, it'll be easier. As you know: it goes away, even without medicating yourself with alcohol, and you'll laugh again.

Today I'm much more relaxed than I was with alcohol. I'm always ME, I'm always clear, and I trust myself, as I've achieved something I thought I could never do - live without alcohol AND being happy, most of the time 😉

Yes, emotionally I still deal with guilt from time to time, but it gets better. I know I can only change my attitude, not the attitude of other people.

Regarding the body my major problems are odemas and fatigue.

Question: a CT scan showed portal hypertension, but I don't have any varices. I thought one would lead to the other...?

Again, thanks for the answers and have a nice Friday!