I'm having one of those moments when I'd love to reach out and say I'm feeling a bit low - but reality is I don't know who to ring/don't like to bother folks/my husband hates fuss!!! Today he came home from work at 1, having only gone in at 10, he's fast asleep on the sofa again. I know we are lucky that he has managed to work full time until now, but this is so unusual for him. He thinks it's just IBS, and thinks he will have a sleep then go back in with no-one realising he's done more than had lunch. The reality is, that it's as if the ability to push himself has vanished. It happened so suddenly, 2 weeks ago. He is just sleeping so much, and we are having to turn down simple everyday activities all the time now. All his levels are satisfactory, no worse than usual. I can't help feeling like this is the beginning of a new normal for us and it makes me feel so bad for him and the rest of our family. We still have 3 children living at home, so it's really tough to keep 'normal' for them. We have an appointment with his transplant clinic soon, and I have had a long chat with the co-ordinators too, so not worried in an urgent sense. I just don't understand why he is so suddenly like this.
Feeling a bit sad and down: I'm having... - British Liver Trust
British Liver Trust
It can be very stressful supporting a loved one with liver disease. If you would like a supportive chat tomorrow, the nurse helpline is open Mon to Fri 10am to 3pm on 0800 652 7330
Because of how my hep c affects my liver, just lately I have taken to napping mornings and evenings. Strangely enough it is not physical work that causes it. I mean the manual work does drain my energy quickly but it seems as though concentrating for a few hours can make me sleepy quickly. I can go without a nap as long as I get some air and clear my thoughts. If he has a job that requires a lot of thought then maybe he is the same.
As trust said ring the helpline or come here and chat. We are always available
Hi Ewife, sorry you are feeling down, but you can always reach out on here if ever you want to ,that's what forum is for .
I have cirrhosis, 13 years living with the disease, alcohol related.
I can get tired , can't really say what triggers it , some days I can sail through others I'm very fatigued, if I meet my sister and we go shopping then back to hers, that can wipe me out for 24hrs , even hospital visits etc..so I can understand your worries about what is to come with hubby ..
Do you know if there are any local support groups near for you to go to for a talk ? Or call British liver Trust, they can help if you reach out on here.
I do hope you feel better soon .
Try not to think far ahead..
Thank you Linda. I'm usually quite positive, I'm sure I'll bounce back tomorrow. I know all my friends and sisters would be sad to think I don't reach out, but its just so hard to actually say "I'm struggling today". I think its just another phase of acceptance and loss that I'm going through. I can't pretend he isn't ill anymore - not that I do deliberately, but its been easier to carry on as if nothings wrong. We've been so lucky that he hasn't been like this all along. I always think folks just don't understand liver disease- I get sick of folks assuming either he has a drink problem or being told that his Liver will heal, so it makes me clam up a bit.
Most of all I just hate watching him struggle to accept what's happening, and feeling so helpless that I can't make him feel better.
Here's to a better day tomorrow for everyone out there!!!!.......
Bless you.. I totally understand, I was very much the same when I became my dad's full time unpaid carer back in 2011, he had lung cancer then secondary brain cancer..days were tough, then sometimes not so , I took on most jobs , drained , going back n forth via taxi to my home just to feed my cats whilst my sister took over for a hour ( she is carer for her autistic son ) .I never asked for any help, I didn't like to bother anyone ..yet now I know how silly I was as I made myself poorly , but that's neither here nor there.
I'm glad you have spoken to BLT helpline, always remember your never alone, and your entitled to have sad and down days , your only human after all .
Please take care .
Always post on here. There are so many people with different experiences of liver disease that someone can usually help. I don’t see too many unanswered posts! The helpline is excellent, well worth a ring.
Hi I’m on the list for transplant , mine was alcohol but haven’t drunk for 18 years now and yes it’s just like someone takes the plug out and your energy goes down the drain, only yesterday the wife and I were watching our grandson next thing I know he is climbing up me saying I’m making a noise ( snoring 😴 )🤣😂, it’s one of the things you have to except it’s not the best thing but it’s there . I wish you both all the best 💕. DaveStay Safe All
Amazing 18 years of abstinence!! May I ask , as myself who has alcohol related cirrhosis 13 yrs diagnosed, I did relapse in 2012 for 2 years ,lost my dad to cancer after I cared for him for 16 months, no excuse I know but he was my rock but got back on the wagon after CBT for panic attack and back then Aquarius. Have you been living with liver disease for 18 years ? only just interested in knowing what has made you able to go on transplant list after such a long time.
Hope you don't mind me asking dogbot ,only I'm doing well liver wise but I always ask myself how much longer can my liver carry on working as it does .
Hi Linda about three years ago my gallbladder started to give me problems until then it was just medication changes, but once my gallbladder started I ended up with thrombosis and then my gallbladder started poisoning my blood so I was in and out of hospital with sepsis . Then I had to have an emergency operation and ended in me being fitted with a ileostomy bag through thrombosis blocking part of my intestines, then the gallbladder got worse and I ended up in King College Hospital three different times where they had to save my life each time, the last time they said I could not go through that again and got me on the transplant list. I have been called once but the liver wasn’t good enough so I was sent home, not a great day so still waiting. I really hope no one has to go through the pain and misery I had to go through. I wish you all the best and I hope you get on the list without all of that, while I was in kings I watched people end their lives because they livers gave up so we are very lucky 🤞. Best wishes DaveStay Safe All
Aww ,thank you so so very much indeed for your kind reply back dogbot..I can sympathise with you were gallbladder is concerned.
My sister went through 12 months of pain until she was that poorly I forced her to see her drs .
She became jaundice and doubled up in excruciating pain
Luckily we caught it in time as she had a stone lodged ,can't recall now where it was but she had keyhole surgery to remove the gallbladder, this was 3 years ago now .she's OK so far thank goodness .
How terribly sad you had to go through all of that though from the gallbladder .. but your so very brave and extremely strong willed to have come through that phase .
I really really hope and pray that your gift of new vigour will arrive soon for you and your family .
Stay safe too
Hi l am the same, it's as though the power has been cut and you just collapse for a few minutes! 😆 I need at least one day to recover from an all day outing. I'm not sure why, less oxygen in the blood?
I came here to tell you Ewife, it really gets me riled up when people say "oh the liver regenerates itself" as though it's you that's somehow clueless! 🙄☹️
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