I;m feeling crap - head-wise

I've only just explained to my boyfriend how bad it is that I have cirrhosis - I'm not sure he understands but is very sympathetic because I was really upset because I'm a bit of a secretive trouper and don't really see a reason to expose him (and my Mum to how bad I am.) i know I probably have told him earlier but I can't help feeling that's it's my own fault because I used to drink so much and \I still have a lot of shame. Please don't say "it's not your fault@ as I can't think of any overriding reason that I started to drink heavily.

I'm in quite a bit of pain, mainly because it's autoimmune hepatitis so my blood-cells are attacking my joints and muscles. I also am extremely week and am tired all the time and constantly got a bollocking from my mum )and bloke.

understand that I'm only writing this because I'm upset, and angry, as I'm sure some if not some of you feel too a lot of tyhe time.

I'm glad of this site.

Oh yes. and Giles 111 seems to have had people get in touch him - he of the God like solutions, otherwise he'd have stopped his advert for a cure for cirrhosis. I may block him if others aggree. youve all been extremely tolerent of him, but I am not. Giles, piss off and sort your bonce out.

Spuds x

13 Replies

  • Hi, Maybe you can replace your shame with responsibility. All of us have been forced by our health into a lot of responsibility if we are gping to continue to live. Some of us are not making it no matter how hard we try or how much help we have. I do not know much about auto immune hepatitis. I have so much cirrhosis I live in liver failure. I am so tired off and on I am unable to go out. Sometimes I struggle to the beach with a cane and my dog just to sit outside then I go back to bed. Others times I can cycle 10-40 in hot sun. Thats when I am happy, the rest of the time I am reconcycling myself to my limitations. I do not have shame, I had that when I drank, it was my life, that shame. I was successful but I was an alcoholic and I did a lot of hiding it thus the shame. I had 2 treatments for Hep C. The last one killed the virus but I have liver cancer now. I got hep c at age 20, now I am 64. I still enjoy life especially when I can cycle. You have a lot of work to do. I do not know Giles 111 but if someone here bothers you then disengage and mind your own life. None of us here have any business judging each other, its a waste of our precious focus on our health. We want to live to continue to love. But its fair to say how you feel but then listen to the members that can help you. I see and hear very little negativity and I have been here longer than 6 months. I am thankful for this group. Try to enjoy every second of life that is given to you. Time heals all. Good luck.

  • Have they identified that it was the AIH or the alcohol which did your liver damage? Auto-Immune Hepatitis can lead to cirrhosis without any alcohol being involved so if it was the AIH then "It WASN'T your fault!". My hubby is t-total and still got cirrhosis due to auto-immune liver disease. Ok a big alcohol intake ontop of AIH won't have helped but hey, ho! what is done is done.

    You seem to be suffering a lot of symptoms from your AIH with the joint and muscle pains. Are you on a medicine regime to reduce those? AIH is controllable with steroid / immune suppressant regime.

    I see the chronic fatigue day in day out with hubby, he also has confusion and memory issues from minor HE and also gets really down because he still hasn't totally come to terms on how his life has been turned upside down. You certainly don't need to be getting into rows when you feel this way and it's a shame that your mum and partner haven't gotten to grips with how this condition affects you.

    The British Liver Trust has leaflets on Auto-Immune Hepatitis and Cirrhosis that you can down load or I believe you get get them sent to you in paper form and if your loved ones will look at them maybe they'd help to explain what is going on for you and what you are potentially going to go through in the future.

    BLT page for advice is at :- britishlivertrust.org.uk/

    If you are not already a member there is a really good and active Facebook page for AIH with 800+ members, it's a closed group so only members can see what is being posted but it is an excellent source of advice, support and a good place to rant with people who know exactly what you are going through. They also arrange face-to-face get togethers including some of the top boffins from time to time.

    AIH facebook page :- facebook.com/groups/AIHorgUK/

    All the best to you, Katie xx

  • Thanks that really is helpful Katie and you're right, they did say that AIH coul be just a unfortunate as I didn't drink massively to exess, and that a lot of people who have AIH develop this kind of H also get cirrhosis from it regardless of drinking, so perhaps I am blaming myself more than I should, though I'm sure the drinking didn't help. They even said if I just cut down t onwhat is regarded as 'sensible drinking, but to me it's all nothing as I'm pretty sure a good few people on here will testify.

    I have to tell everyone this whilst I'm on here because it's so absurd it's almost funny. Before though I must tell you that I have total respect and admiration for 99% of the nursing staff and Dr.s I've come into contact with -it was just unfortunate that my most recent Doctor is really useless.

    after meeting him for the first time I told him about my condition and ailments and I thought he was typing it up. He was looking at the computer for a long time and not doing a lot of typing so I looked to see what he was doing. He was on Google!! I couln't help myself, and sid 'surely you're not honestly Googling all of this. No answer and he carried on typing and reading.

    As I was leaving I had to say something. 'it's really not given me much faith in you as a Dr. If you really are so not ofay with my condition and need help, you could have at least sort out a more specific site.. Not one that is renown for scaremongering, mistakes and downright rubbish, 'oh I am. ' he said and he flicked back a page to show me, and it was I OUR SITE . 'HealthUnlocked'.!!! He was looking up diagnosis and treatment for my disease with info on a site that I regularly contribute to myself. I know that between ourselves we probably know as much through research and our own experience, but really....

    I was so shocked that I laughed in his face, and promptly left.

    Of course I'm now looking new doctor.

    Spuds x

  • This was a GP right? If you have cirrhosis you should be getting regular consultations with a consultant either a gastrologist or heptologist.

    It's a good idea to give up drinking altogether too as the advice that drinking in moderation is ok when you have liver disease is controversial. I found that out when I went for transplant assessment and was quizzed about my drinking, even though it was within guidelines.

  • Hi Spuds.

    I have AIH with cirrhosis. Eventually diagnosed after 15 months investigation. The aches and pains went when I started on prednisolone, I'm now tapering pred and on Azathioprine aswell.

    When my inflammed liver was discovered (by accident) I fully expected the reason to be my love of wine and my almost constant consumption over the last few years.

    It wasn't. It was AIH. Obviously the alcohol will not have helped but it was not the cause. And in fact my consultant has said I can still have a drink. I choose not to mostly now that I have early stages of cirrhosis but I could.

    So please stop beating yourself up. You sound just how I was. It's not your fault. I was pleased I able to stop the alcohol without issue and that must be z big plus amongst all of this rubbish with AIH.

    Take care xx

  • Spuds,

    Its strange how the mind works, how you are suffering all this awful pain and illness and yet your brain wants to make you worse!! I have the same issue, not shame, but other things my brain won't let me forget!! I won't say don't worry about it, or stop beating yourself up, cause I know how pointless that is. But you can try a be nicer to yourself, I don't mean feel pity but just try and tell yourself the positives, at least you stopped drinking, at least you found out and have medicine which may help slow things down etc. I know trying to reframe your thinking to a more positive thought process is not an overnight thing, I've been trying for years!!

    I have PBC, cirrhosis and portal hypertension. I have had pain for more than 13 years, that's what lead to getting diagnosed 10 years ago. I'm am now on a rather heavy concoction of opiods just to manage, although they are becoming less and less effective. So I really empathise with you there.

    My life has been ruined by this illness, I have not worked for 6 years, which is soul destroying. I'm 45 this year and feel like I'm missing my life, almost waiting for things to get worse before they can have the chance to get better, but also the fear they may not. Like sitting on a time bomb.

    My husband is fantastic, and I know I'm very lucky. It always upsets me when I hear of people alone, or in unsupportive relationships and dealing with illness. But even with all his brilliant support I always had the sense my husband didn't really understand why I feel the way I do. So I did just as Katie has advised you and sent my husband links to all the relevant pages on the BLT website for him to read. I felt a little guilty after because the poor thing looked so shocked after he'd read them. However much I'd told him I don't think it really sank in until he saw it in black and white. I hope if you do the same your partner will start to give you a bit more support. Having anymore for your brain to deal with on top of all this can't be good for you.

    I wish you well,

    Take care


  • Bigspuds sorry to hear your in a bad way..i have pbc which causes same probs as hep and yes ive used the word crap...it makes you feel really poorly doesnt it.

    I think perhaps you need to get some written info on your disease and let your mum boyfruend read it.if you drank then thats in the pasr you can only try and do the right thing now.

    If they care they will understand as best they can.unfortunately its a disease that doesnt show so people think we are fine!!!

    Be brave and tell them the truth im sure they would want to know.if it was the other way round im sure yoi would want to know?good luck .we all undersrand even if no one else does.cazer

  • Hi, spuds, I've really learnt something reading your story and the replies, and very grateful. I have very recently been diagnosed with cirrhosis. I have always been a moderate drinker of wine, but last year had a daily issue lasting 2 months. Ended up in hospital with ???alcohol hepatitis, abstained, drank a little at Xmas with support of doctors. Had a bile duct infection this year, back in hospital, MRI whilst looking for mischievous stone, found course liver surface, and diagnosed with cirrhosis.

    I've have constant joint pain and muscle weakness. Been through rheumatology , nothing identified. Also have under active thyroid problems. Had a steroid injection in shoulder 6 months ago and like a new woman for several weeks, fantastic. Now several months of pain, hands, hips, weak quads. This debilitates my life.

    Seeing consultant Monday, will ask about AIH. Thankyou

  • Freddie. My joint pain we awful. Was checked for rheumatism and polymalgia rheumatica both of which have similar joint pain but tests were negative.

    I got so bad I couldn't raise my arms above my shoulders, couldn't fasten my bra, couldn't grip even my toothbrush or squeeze the tube. I had to brace myself to lever out of sitting position and when I drove my car was doubled up when I got out even on a short journey.

    Seems it was all down to AIH in the end . When I started on 30mgs of pred the relief was apparent within hours!

    Definitely worth asking about AIH.

    Good luck x

  • In defence of the doctor - he may have been looking up the local health service or hospital, Intra-net. This is a resource for health professionals who can seek local protocols for treatment. On the other hand he might just be a prat with whom I wouldn't feel safe if he was looking after my health.

  • I've just got to say to all who answered me that by the time I'd read them all you'd managed to dig me out of the depressive hole pretty much altogether. I know we wouldn't be human if we with this illness never had big pockets of time when you feel stuck in a trough and it takes someone who understands to help you out of it,

    Thanks to all

    Spuds xx

  • Keep strong , take care x

  • when people want to protest against stopping drinking altogether even although it may affect there health then its obvious that they have a drink problem.

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