Am so fed up today, I never woke up with the alarm, I didn't even hear it and I guessed I subconsciously turned it off therefore my son was late for school, my husband ( who has decompensated liver) came in shouting at me! Saying I've slept in!We sleep in separate bedrooms cos hes awake all night itching
Last night he called me in the room about 3am, he'd scratched himself that much There was blood everywhere! He's on warfarin so it took a while for me to put plasters on etc
Hence why I was so tired this morning
I've been off work since his diagnosis in October, cos i work 2pm -10pm and I cant leave him or my son
I'm running on empty, am seriously struggling
Thankyou for listening/ reading
Tulip
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Tulip1973
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Awwe, it's tough and exhausting. Is your husband like mine and not keen on being seen as cared for? I call myself an undercover carer - I have all these little tricks - ways to look after him so that no-one realises and his self esteem stays good - but it's so tiring sometimes, and folks just don't know what you're going through. I can't commit myself to anything in the mornings or evenings leaving me such a short window of time to fit things in for myself. Hang in there, you're not alone 🤗Ewife xx
I really feel for you. I hope you get some time to spend on you, at some point. Sometimes all you need is sleep, to be able to face the day better. And you’re not even getting that. Don’t underestimate the level of pressure you are under. It’s awful to see a loved one suffer, and we absorb that as much as the stress of the practical challenges. Take care of yourself too.
Hi Tulip, you sound absolutely frazzled and you need a break. Have you talked to your husband about how you feel and what help might be available, I imagine you’re both equally exhausted with it all. Could you get a couple of nights off, maybe where your son has a sleepover and your husband agrees not to wake you?
Re work, it sounds like public sector so there will be support available. Going back to work might even help how you’re feeling but it’s got to be on the right terms. You could talk about a phased return, different hours, flexible hours. They will want to support you to get you back. My work had brilliant support networks including a carers network.
Sometimes we all need help and you’ll be amazed who pitches up when we start telling people how we’re feeling. Maybe start with your GP and your sons school so that they understand and can support you x
From your post you clearly need to take some time for yourself and son. This is a very emotional period of your life, which is quite understandable. I know this is probably not what you want to hear, but could a family member of friend help you for a few hours at the weekend so you and your son could spend some quality time together. I really feel for you, your son and husband. Such a sad time for all. Please take care and all my thoughts.
sounds tough for you ! 💪🙏 I know it’s difficult but you need some ‘you time ‘ just with a book or a walk to try & get headspace away from problems ! It’s so easy to spend our time caring for others & not ourselves ! You are strong 💪🙏❤️
you must do how you feel . But it the itching will stop tell him to keep taking the that nasty medicine he will no want I mean it comes in a bottle .for you keep going try to get time for your self . I had the same as him and it will go away but it takes time get some sleep good luck
If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
We also facilitate a range of virtual support groups for people living with a liver condition and for their families and carers.
If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here:
Sorry I’m only just answering I was up at king college hospital yesterday with scans and meetings and as I live at Gatwick we ether we drove through rush hour or stop for a dinner, so late home. It’s very hard to juggle life the way you have to. I really do feel for you especially when hubby is bad temper but please try to remember when I was going through the itchy state it is horrible for everyone. Can you you not get any respite so you can recharge, is there no one to help, I understand it’s very difficult there is light at the end of the tunnel. I do hope you can find someone to help sending all our thoughts 💕💕.
Hi Tulip the wife just reminded me that although I used E45 cream to try and stop the itching I used pure Aloe Vera. Now there is a lot of them for sale but try to make sure that it’s pure Aloe Vera. Good luck
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