British Liver Trust

Confused completely please help

Hi to all I'm terrified as chronic alcoholic I have abstained now three years I was told hepatic stenosis and hepatomegaly also lesion on liver and gastric reflux ,now I have early stage of cirrhosis I have adult ADHD so forgive me but I also have co-morbidities I am confused why it's worse please I am in a lonely place and need some guidance or someone who is in this stage .please can someone help me understand the progression.thinking of all that lives with this fear day in day out .

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Hi. I'm newly diagnosed as well mine is nails and cirrhosis. Like you I am scared. I don't know much at all about what we are going to face. The advice I've already been given is one day at a time. This is absolutely right.

I have started major work on my diet. All I can do is do my best to keep it up. That is going to be more difficult. So I day at a time.

Next I'm trying to think how I can increase my exercise safely. Again I day at a time.

I think another important thing is having a support network and here is a good start. But, do you have any groups for your various difficulties in your area? Your social services might know.

Let's take these first steps into the unknown, as part of this support group and just take a day doing what we can to help ourselves. When I feel in a better position I will be asking professionals more questions. At the moment I am just concentrating on diet, exercise and finding a network of support like this group.

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Thank u for replying I feel overwhelmed as I been locked inside me own head with fear ect it's hard enough asking the dr anything when you have no idea what they said after ,I feel bad asking people that are so ill and worried themselves thankyou for giving me the advice and don't worry about spelling as its took me hour to try get this reply back I am very grateful .idont no what to say but your right it's day by day and as mine is ARLD I am ashamed ,thankyou my thoughts are with all on hear .

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Sorry stupid auto correct nafld, not nails. Dyslexia is another issue of mine as well as forgetting spell checker can be a pain.

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Doesn't matter what caused our problems. The main thing is we help each other deal with them as best we can.

You have kept off of alcohol for some time, that is good. Each day you manage to keep off it is good.

I could call myself stupid on so many things I have done. What good will it do me? Answer none. I have to keep working forward, and try my best. On a day I feel low I have to rest and find a book to read that is light hearted, so I can deal with things a bit later. As long as I do do my best that has to be okay. That's all we can all do.

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Thank you for reply I am having another bad day the fear as I got to many other things wrong with me I'm doing day by day I had panick attack getting on the web but I feel there is hope the hope I needed to even reply so I'm truly grafull

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No problem we are all there to help each other.

As I said before my work is as a part-time advocate. What I didn't say is that my various experiences have meant I have a bit of an understanding of some health conditions. Not I hasten to add liver or spinal cord injury, so clearly something or someone out there decided I needed to expand on my practical knowledge.

I do know that adhd is not easy to live with when things go upside down for us. Do you have any support professionals helping you with your adhd? If you do, see if they can help you to understand all the issues you are dealing with and help you to go and see the right people. I know having people who we trust to help and understand our needs can be difficult.

Everyone who has contacted me so far have said healthy eating is vital. Ask your liver consultant's team or your GP to refer you to a liver specialist dietician or a dietician who understands the differences in need depending on what your health needs are, to help you work out what you like to eat, what is safe to eat, as well as the amount to eat. Try and also explain to them how your adhd affects you.

Just remember every day you don't drink alcohol is another day you are working hard to help your health.

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Thankyou

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No problem.

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I just wanted to thankyou again I've been having panick attack for two days as of I have had a prolapsed disc removed as of my spinal stenosis osteoarthritis and now degenerative disc desease ,had total hip replacement and cemented the pelvis as they left it so long the had bone growths on hip was bracing off pelvis the pain could hardly walk 2years but 7 months on I can walk not far but grateful for that .i do not have one person even social service I reported myself and daughter as vulnerable adults ,mental health ,mp,gp,you name it I to be sent back gp

As I have PTSD as well . sorry I'm going on and on just needed to thank you again.

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Is there a local advocacy service near you? How old is your daughter? Assuming she is a child is there a young carers service near you? You need someone there to help argue your case. As it would not be right to ask or give the area you live contact the British liver trust helpline to see if they can give you details of a variety of services in your area.

It sounds like you need a care act 2014 needs assessment that covers all of your needs. Depending on your daughters age there may be an assessment right for her. I can't comment here as it depends on your circumstances and her age. But get local help.

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If your daughter is over 18 looking after you she should be entitled to a carers assessment under the care act from social services. The Carers trust or carers uk are both national charities who may know of local carers centres in your area. They are both on the web. Htpps://carers.org and carersuk.org arthritis care arthritiscare.org.uk might also be useful. AADD-uk is a society for people who as adults have adhd. aadduk.org

Sorry it is a lot of numbers but often it needs a few places to visit and chat to before you can find the right local support to help get what you need.

Best of luck.

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I'm so grateful for the reply I'm going to contact them .for a change can't write anything more as a compulsive talker and now I'm writing novels as repleys,you have made my day and thanks ,sorry how are you as I didn't ask .thanks again

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Been doing a little light gardening. Never thought I would again. Needed help but did about 30 minutes. So feel good then had to have a long rest. But I'm not at work this week so it felt great. Going out with work and some volunteers. That will be interesting dealing with the you should eat more comments by people who don't know I can now only eat very small portions if I aim to lose weight and reduce the speed of my condition getting worse.

Wish me luck.

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Sorry I wish you all the luck in the world as you are a wonderful person that you gave me advice comfort and courage I hope that you no that if yor down I may reply in wrong order of things but I always even as a drinker I always felt I'm drawn to try to help anyone not suffer or have to but I can't fight for me as going over the life history I need to do it in volumes as my repleys are getting longer just to make you laugh I bet u think oh no not her again with a longer list ! Lol and I can't stop eating I got reverse.

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Going over life history is a Bitch. I know that. Try to find help for your daughter if you can't do it for yourself. I find it much easier to help others than myself.

Something I learnt though the hard way is that if you don't look after you, it gets harder to help others.

Went out the other night. Drank water and only ate a small meal. The next day I looked at the scales and put on weight. I think I went too far with lack of eating. Next day I felt really tired. I go to the Sheffield spinal cord centre next month and I'm going to ask them for help with a diet plan. Sounds crazy but as they understand that after an injury internal organs also struggle as well as legs, arms depending on where the injury is I think they will be able to help.

I have a reputation for struggling rather than asking for help. But I know I need this. I think I will have to write things in a book so I don't have to keep saying them.

When I felt really bad I needed to learn to sit in front of a mirror and ignore how rubbish I felt and just say g loves g.

We can chat on line if that helps you to know you are a lovely person who is dealing with a lot of things. If that helps you to help yourself, it will also help me to feel good about me.

Speak soon

G

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You have put a lot into helping me just by having a wonderful person that does not judge as at the end of the day I belive that no one ever knows what a person has suffered I'm a person that if I can make one person laugh a day that's if I ever get out of being house bound and as for the spine the pain is to much but we do as we do and people when I go out regularly is transport ambulance hospital and then you no wat the dread of next test results goes because I talk non stop as me ADHD at 53 is the only thing that makes people laugh even on hospital wards as patient the older ladies say no is boring without you and I feel a bit of worth as I try to make the best of me day out but that's about as good as it gets. I must let you no that I struggle but you no why I don't ask as I can't stand another knock back ,I hope that you no you have kept me going and you are a wonderful person and never forget that .

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You deserve some help. You need to phone the British liver trust next week for support about different agencies you can contact locally. I know it is difficult but despite your ADHD you can make the call.

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Don't no about advocate but me daughter is 32 yrs old has also adult ADHD along side personality disorders antisocial disorder we both been in psychiatric hospital and we are left to it ,no services will help assesment mentalhealth told daughter they could not see here and closed case as of I was ill and having op and that again referred back gp .my liver dr it took a year after me stop drinking to see her same thing over and over .its to unreal that you have to belive me we have constant changing of the gp never see the same one .

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Do your local services do online self assessments? Also I know you have a diagnosis of adhd but it might also be worth looking on the national autistic society webpage as there are some similarities especially with asperger type autism. It might give you some ideas on how to explain your difficulties. Obviously, you have several health things you are dealing with that causes an accumulation of issues you are dealing with. I still think you need to look for a good advocacy support service in your area. Ask social services for a list of advocacy support in your area. If the area only does care act advocacy let me know and we can rethink the situation.

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Sorry about not getting back sooner but I have had another bad shock and if you no something about mental health can they discharge a patient with no fixed abode,when they have been admitted but hospital are trying to make them leave after a 3daysection by police as a danger to the self s,

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I'm sorry about last reply as it was my son 35yrs old and he is a drug addict that's very manipulate .But he is now not excepting as always he needs it as mental health rules change constantly I am not up to date with,

Im ok now as mental health run in my family I no his is drug induced psychosis I don't no if he has an underlined mental illness but up to the drugs started he I feel strongly that he had nothing till the age of 15 sorry about keep replying.

Are you ok I'm here if you need me to be as your able to have help yourself because you helped me and probably a lot of people.

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No problem, I hope you are o.k.

We have had a family day today. We went to a garden centre and when it is a bit cooler tonight we will do some gardening. We had a bbq but I was careful and had a piece of salmon cooked in foil. It was lovely.

Check out with your doctor about what support is in your area for mental health needs, again see what family carer support is available in your area.

Gx

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G I'm defenetly on the case load of problems tomorrow .im glad you had you had a family day and B&Q we had one the weekend as well .im happy to hear from you as all the time you putting me in the right direction ,tell u truth don't think I'm crazy but I was worried about you ,that I put to much problems ,but glad to no your ok .

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Just remember to look after yourself. When we have a lot to deal with it can feel very difficult to manage. Don't try to do it all at once. Also it does take time to deal with and waiting for replies or being sent on to different places can feel frustrating. Just remember you are trying to help yourself and be proud of yourself for taking the positive steps.

Gx

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Thankyou ,I started today with looking in the mirror and talking without loosing eye contact with myself,and saying one sentence .without thinking on million other things .You gave me the best advice.

Never did I think it was so hard but I did it in the end . I also took a long look look at myself and which I never do but today and every day I will because I never liked me ,this was a true feeling of yes I do ,thanks my dread of day lifted and it really helped .thanks a lot .

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I am so happy that you are learning to love you. Keep up the good work. 😀

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I just wanted u to no as I think your be happy for me it's a long story but 11yrs after stating divorce I truly thought I was as at the time I had bad hence PTSD .

I thought that I was divorced and it was still in archives and I could not have original paperwork as of attachment I put me case together had search done ect and I done it all me self just after me hip op (sound like a group) and I m in shock that it's done huge excepted my statment of truth and why it had been in arcives I'm feeling the atre Marth of it now but I am so relived.hope your ok .

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Well done. It is great to see you are looking after you.

I have my gastroscopy on Friday. I was so pleased it came up normal. I would have said they had someone else's results if I hadn't been in the room as they looked at the screen and the readings.

I will be going for a short holiday in Devon next week. I hope the forecast changes.

G x

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I am so happy for you I'm really glad and hope u had a good holiday ain't been on here for while hope you still doing ok

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Hi

We had a lovely holiday thank you.

How are you keeping? How are things going?

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Well i tryed my upmost with dr ,social services.mental health and we are in worst area for health care well one of many areas this is the 10th time mental health sending me back to social services back to mental health and believe it ombudsman mp it all back to go who does nothing but refer again I'm sorry but I got see liver doc next week . Had a good result on Friday but my mental health going downhill as my daughters I'll diabetic type2also fatty liver and polisistic overies she is. Getting ill and more tired than she can handle so I will try go another way about help we need a support I'm so glad you hadn't break and good time nice to here from you

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Which county do you live in?

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Uk

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Hey faithfull,

I have read many of your posts and I relate to being bounced here there and everywhere although not as much.

I'm sorry your daughter is going through a lot too, I was diagnosed with PCOS at 19, 30 years ago now and I still get side effects from it. Diabetes too it's no wonder she's tired bless her and you for fighting on.

Where are you in the country?

Take good care eh..

Michelle xx

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What country you in

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I'm in Surrey, England

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In Havering Essex worst area for any health care .

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I see there is MIND in Havering and NEFLT, have you tried both of these? It's worth trying to write down all symptoms and what you think you need so that nothing is missed and then ether visit GP first or I know you can call MIND as I have done the same historically. They may be able to point you in the right direction. It's so wrong that you have no support. I now have emotional support from a support worker through a charity for women in Woking, it means I have to go out and get a train there but I get there no matter what, have to take a pill usually though. I did have help but the funding was pulled for his service but it helped heaps. Keep pushing for help because you deserve it. Xx

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I've tryed both they come round and ask if I want council ing said yes then they came back with I'm on to much medication ,well they put me on them and I been on the mental health reg. Daughter same they won't help her as they said its your mums illness .we are both knob to mental health , also had family mosaic they sent 3worker in six months and all the cuts they done nothing but made me nerves bad as they new me family.

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Hi faithful.

Some contacts in the Essex area that might help if you haven't already contacted them.

1. openroad.org.uk I know you haven't had alcohol for years but they might be useful

2. adhd-support.org.uk

3. Just in case you and your daughter might also have asperger syndrome, most people I know with an adhd diagnosis also have this. Www.aspergers.org.uk/about-safe

4. Caring for carers Essex 01255474410

5. autism.org.uk/adhd might be another useful site to look at. It explains about how a lot of people have autism and adhd. Asperger is part of the autism spectrum. It is people who are usually in mainstream schools, some go to university but they have some social difficulties. The reason I suggest this is because a lot of girls and women have asperger level of autism and never get diagnosed. It can make life so difficult for them.

I have given the carers number because despite your own health problems you sound like you are caring for your daughter and she is caring for you. If one of you takes the lead as family carer and explains the difficulties you are having trying to get help for the other, they may be able to help. Where I work a lot of family carers have disabilities as well as caring for someone who has a disability.

Sorry I haven't been specific to Havering but these services might be able to help or signpost you to closer services.

I work in the voluntary sector and we often have to find out a bit of information before we know where best to point people and which advocacy service might be the best one to help.

Good luck. I think if you can get the right advocacy support it might help.

Gx

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Bless your heart you given me really good information and I'm going to get in touch with the organisations .I thankyou so much for everything as u always put yourself out to help I really appreciate it. I will let you no how I get on thankyou

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No problem. All I'm doing is the same as the easy part of what I do at work. It's not putting me out in any way. Shame you don't live in my neck of the woods. I would have a better idea of the way the services operate.

Gx

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Stay positive guys. Theres loads of people on here in the same boat that offer a wealth of information and support.

The shock will slowly subside and youll become more comfortable with it.

Mine was also caused by my stupidity with alcohol so I know how hard it is to finally become sober. Youve done the most important thing to maintain your health.

So well done!!!

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Thanks for advice I stopped drinking 2and half yrs ago I have so many things wrong with me other serious but the liver is worste as now early cirrhosis and I am never well and I just want to no how long have I got I no it's an impossible question but my hospital is useless gp same they keep making mistakes i no I'm not the only one but I really don't have anyone not even a social worker it's just me and 32yr old daughter who has mentalhealth and diabetes so I thank you for your reply it's helping me with all the replies try to move on a bit more thankyou

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This link takes you the British Liver Trust publications. You can doenl9ad them or request the leaflets.

If you read through the appropriate ones it will help to form the questions you personally want to ask.

For doctors appointments write down the questions you need answers to and if possible take someone with you so they can help remember what you are told as well.

Try not to panic too much it's not a terminal condition, life limiting isn't the same thing.

Rita x

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Thankyou very much for replying I appreciate your support thanks again.

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britishlivertrust.org.uk/pu...

For some reason the link seems to have fallen off the bottom of my previous post so I am trying again.

I blame the gremlins that run autocorrect ... they steal my spelling and because of that sometimes my sense. That's my excuse m'lord and I'm sticking to it

Rita x

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Thanks for the link I really needed to understand everything properly it may take guide a while as I keep forgetting what I'm doing its getting worse I'm also answering my own questions no joke ! Then as of me ADHD I'm confusing one of many Dr or consultants who are hard to talk to ,with listen I have to take me home I have to live with me it's ok as you dr can leave it all behind i can' t ,I thought I'd try make a little joke as it made me laugh when u said that's my excuse and I'm sticking to it . I say the same ,thankyou for the link .

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Have any of your doctors mentioned lactulose to you?

It's a particular laxative that I and many others take daily. This isn't to give us an attack of the back door trots but to clear the toxins from the system the liver can no longer do. These particular toxins have a direct effect on HE which affects the memory. So taking it helps to improve our memory again.

I fully understand the ADHD as my son, who also has autism, has it and my grandson also (strong gene pool here 😂😂)

It does make writing your list of questions more important and having someone with you as well. This might sound odd to some but take a cotton handkerchief or something with you that you can fidget with and that should help your concentration as well.

We all come away a bit she'll shocked at times.

As for talking to yourself, I actually argue with myself at times. Keeps the family entertained though. Whatever gets you through the day safely though right?

Rita x

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Yes I'm having trouble with getting the balance of one extremely to another .

My daughter ADHD she 31 and she is more sensable than me mine is getting worste .4girls in family have it it's mainly boys so I'm told. You made me really laugh then I burst out crying as me emotions all over the place .i ague with myself.i am fully aware that I do it in public not the aguements just everyone else keeps it in there head .i now do not look like in public a Crazy women I put the ear phones in and it looks like I'm on phone ,

Seriously I am grateful for your reply it helps Me that you have a real insight to me ADHD . Thanks

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My memory is shocking Faithfull, did you mention you have PTSD? If so that could be the cause although I'm no mental health specialist I have it too.. I now have to write lists for everything, especially things like what days my daughters having a lunch box, what to prepare for it and I forget entire conversations sometimes or stop half way through and forget what I'm saying. Since a trauma in 2015 that's when more symptoms were added but I think it's always been there, especially GAD. Stay strong..you are definitely not alone xx

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