Feeling lost today

[jojokarak]

Hi all, this feels like one of the loneliest and emotional days i have had. Am hardly sleeping at night and even tried to have a nap earlier but I just didn't have a good one. I have had to go out and it felt like hard work all i wanted to do was sit down and cry. When no one in your life has any concept of what its truly like makes me feel useless, sorry to go on but defo not feeling great at moment think i may have took last few weeks for granted as i have felt okay. Just wondering anyone's liver make gurgling/rumbling noises often?? and any tricks or tips for sleep???

[AyrshireK]

Sorry to hear you've had a rough day Jojo, you sound like you are in the same cycle as my hubby, not getting good sleep at night and day time sleep not doing anything to recharge the batteries. That's how my hubby has been since 2010 most days.

He'll get one or two 'decent' days - that's a day when he doesn't need bed rest, he'll get an infrequent 'good' day which is one where he can manage a good walk (4 miles not unheard of) then pay for it with weeks of grotty days where he'll need a long sleep during the day although even that doesn't refresh him.

Sadly the lack of energy and sleeplessness are all part of your cirrhosis and sleep disturbance is also a common HE symptom and I know you are already receiving treatment for that with your Rifaximin.

Hubbies tummy/liver certainly grumbles and gurgles a lot but no one has ever said anything about that & only very infrequently does he get mild 'twinges' of pain in that area.

Although you are physically alone with this just now you are certainly not alone in experiencing and going through what you are. I see this everyday with my hubby and I am so glad I came into his life just when he needed someone the most.

How are things progressing with your Leeds referral, transplant assessment etc. ?

Make the most of your good days, that is what hubby and I try to do, I know it is impossible to plan ahead when you don't know what certain days will hold health wise but don't give up, keep living your life as best you can and fingers crossed you'll see some improvement in the near future.

Love and best wishes from Katie xx

p.s. Sadly I can't offer much in the way of suggestion for improving sleep, we've not achieved much improvement in that way for hubby. Relaxation tapes, chamomile tea before bed time, a hot bath before bed, lavender in bed room all suggestions but whether they work for you is another thing.

[Bluehills]

Please remember that you can always come here for help. I'm still suffering sleeplessness and tiredness, months after I was told my liver damage would resolve itself once the gall stones were sorted. The best thing I've found is to listen to audio books or soothing music. I also had quite a lot of help at first from sleep relaxation tracks. even if you don't drop off totally, this way I stop worrying about not sleeping. I agree, its so lonely in the middle of the night when you're still wide awake.

[jojokarak]

Thanks katie, it makes all the difference knowing people do understand just a pity we all dont live near each other to support each other in person sometimes just a moan or a chat is all you need, and i am grateful for this forum as i feel i probably bore friends and family with it so most of time i plaster a smile on my face.

Regards to transplant i have fitness test on 5th august so fingers crossed i am found suitable but will cross that bridge when I get to it.

I will try the relaxation tapes only thing i havent explored.

Hope you and your husband are okay and thanks again it meant a lot your response xxx

[jojokarak]

Thanks bluehills i am open to anything to get me to sleep so thanks for the suggestions, and your right middle of night has got to be the loneliest time in the world shame i am awake most of it. Hope your keeping well x

[pear-shaped]

Dear JoJokarak,

My husband says that it is the worst symptom of all as people assume you can't be bothered but you physically are so tired. He also finds it very difficult to sleep and has tried many different things. Massage seems to be the only thing right now... You may want to try relaxing music... I have also used lavender oil with works well...

There are lots on here who will understand that this is part of your liver problems... All the best for your appointment.

Lots of love,

pear

[jojokarak]

Thanks pear, and your husband is spot on. You end up feeling like a burden to everyone even though my friends and family assure me i am not, but we can't help our feelings, it doesn't help having a husband who has brain injuries, his memory worst than mine but we have to laugh otherwise we would go mad lol.

Its not often i do get down so i glad i feeling better now, i had an enema which has given me a complete clear out, i dont recognise symptoms of HE as quickly now due to rifaximin i am on.

Hope your husband and yourself are okay xxx

[pear-shaped in reply to jojokarak]

Good to hear you're feeling better. My husband was on refaximin and had terrible HE... Plenty of times I had been on here and rescued by the lovely people who use this site... Many times it felt as if there was no HE and this was how he really was...since the transplant he hasn't had HE and the difference is amazing... He doesn't remember much of what he was like and doesn't want to talk about it at all. We have been reassured that he is top priority and the doc predicts he will remain stable for about 6 weeks... If you can call this stable!

It must be very difficult managing your illness and your husbands...

Lots and lots of love,

Pear

[ballie52]

The lack of sleep is a killer..i have been like this for about a year now..awake the whole entire night..i got some sleeping tabs from my doctor and they never worked either..it drains my energy for the whole day not getting a decent sleep and left me with huge dark circles and bags under the eyes..a horrible side effect of liver disease.

[jojokarak]

Hi ballie, the bags and darkness under eyes i hate makes me look 20 yrs older. My doctor and consultant wont give me sleeping tablets they say my liver wont be able to get rid of effects out of my system and make me more drowsy the day after.