AIBU to be miserable inside

[DilemmaDelilah]

My DH has just been diagnosed with a long term very debilitating condition that is going to change our lives hugely. Amongst other things it means no more sunny holidays abroad and having to be very careful about what we do here. I was really looking forward to having one more really fantastic holiday somewhere hot and sunny, to make up for no holidays during covid and very few in the 5 years before then due to family crises of one kind or another. It's not his fault obviously, and I don't begrudge him one bit of the lifestyle changes it is going to mean for both of us. I am being very upbeat and practical about it all on the outside, but aibu to be miserable inside? I am very lucky in that he has always pulled his weight around the house, and since he retired last year he has done nearly everything as I am still working full time, but it looks as if I am going to need to be doing everything in the future. He has already had to give up driving so all the little things he used to be able to pick up during the week I now need to do after work or at the weekend. He can't get to appointments on his own (I would always go to his important appointments with him anyway). He can't get to the post office on his own. I love him dearly but I'm not that fit and well myself so I can see it becoming a struggle. I know there are lots of mumsnetters out there in the same or worse positions, so aibu to be miserable on the inside if I don't show it on the outside?

Give yourself a break @DilemmaDelilah

it sounds like a lot to deal with, and it's only just happened., so please just be kind to yourself, but also honest with your DH so the resentment doesn't build and come between you. No doubt he'll be feeling the guilt also, so just take it one day at a time

Of course YANBU. It’s devastating.

My BIL has quite recently suffered a brain injury with some very serious issues. Whilst it’s absolutely dreadful for him I feel equally sorry for SIL who quite likely faces a future as his full time career.

Just awful. However you MUST make time for yourself and take care of yourself. It’s vital.

Take any and all help offered, you don't have to do everything. Put in place things like online shopping, prescription delivery, any smart home tech that might help you both. Look for respite care, either official or family/friends who might help. Have that holiday with friends or family.

I'm sorry to hear that, it sounds tough - but don't be to quick to discount the possibility of holidays.

I have a friend who took her mother away to Madeira every year, despite the fact her mother was mostly immobile and very elderly, and another who went away on cruises - she was wheelchair bound due to motor neurone disease, but cruises are so geared up for the elderly and infirm that she had a great time.

Can you go abroad without him?

YANBU but being constantly unhappy takes a real toll on you and that can also start to impact those around you. It's really important that you look after yourself and still have some joy in your life and that ways are found for life to be able to go on as much as possible for both of you. It's very hard to constantly pretend you're fine, it could really help to talk to someone ie a counsellor or to others in a similar position.

Would a mobility scooter, electric wheel chair or anything similar help your DH? Can you claim carer's allowance, is DH claiming disability allowance? Like a PP, my completely bed bound adult cousin used to go to Spain every year with my uncle so holidays might be more complicated but still possible to do. I would also say go on lots of sites specific to your DH's illness and find out what other people have put in place, found helpful etc. Can you get an assessment from social services to see if there is anything that can be put in your house to help him ie rails or for someone to come in and help him during the day if needs be?

YANBU.

It's ok to let him know too.

Whilst being upbeat and practical are very postive things, denying reality is not helpful to your wellbeing and mental health.

My friend whose husband was diagnosed with a inoperable tumour, whom she nursed for several long years till his death allowed herself 15 minutes of misery every day, sometimes taking a spin off to shout, scream and cry at the unfairness of it all.

She needed that time to keep herself above water with 4 devastated teens.

This is very hard on you.
Reach out for support and accept any help and assistance from local supportive organisations.

Wishing you well.
Keep posting too.
It's good to write down your emotions.
Oh, and let work know and support you too.

Thank you all for your responses. I dont think we are yet at the stage where we can get, or need, any practical help and I'm very glad about that. Getting about is an issue for him in that his eyesight is very affected. He also has muscular weakness but that isn't too bad at present. Extremes of temperature are advised against, so no sunny holiday, plus I wouldn't want him to be too far from medical care in the UK, but we can still have holidays nearer to home. I'm just feeling very sorry for myself at the moment. I can see how scared he is, and how frustrated he is that he can't do things he used to be able to do. He has always been very capable and has always needed to be needed. Now he just needs and has to rely on other people. I have so enjoyed the last few years of having somebody to depend on, and I am so selfishly sad that I'm now back in the position where everything is up to me again. However he is the love of my life and I would do anything for him. And to those who suggest that I must take time for myself, thank you. I do do things for myself and will continue to do that, although I might need to think again about whether means.