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Rant - coping with disability and partner

(68 Posts)
gentleshores Tue 01-Oct-24 02:07:38

So I know it isn't easy for someone living with someone else who has a disability, and hard for them to understand. But - right now I thoroughly dislike OH for being so crass and insensitive. I don't think he will ever get that I have needs - I might look and sound the same, but have pain and restrictions - but somehow I'm seen as just the same. I mean I need things that he doesn't, because he's pretty fit. I've had to change a few things round the house recently so I can manage and he's making such a fuss it's making me feel like I'm not important. I've told him that and he still doesn't get it. He is being childish. I say - I'm not doing these changes for fun - it's necessity.

He's quite helpful if I ask him to do something (sometimes), but other times he just makes my life harder and doesn't help with working out solutions or decisions.

Sorry I know that's not very clear. But I feel like kicking him out right now. Except I can't because I need him to help with things.

gentleshores Thu 03-Oct-24 00:53:15

I think it's a difference of opinion when you discuss things - before making decisions or one person giving way. It's a betrayal of trust when someone promises to do something or not do something and then goes back on that and does the opposite - with no discussion. I think changes to anything major like a garden or house should be joint decisions. And yes I am very upset, hurt and perhaps angry - and a bit confused as well.

gentleshores Thu 03-Oct-24 00:58:24

I would like to get a gardener in to do a few things - it's not something I would do without discussing and agreeing with OH first, as it involved money. I'm almost tempted to add a photo of how bad it looks. But don't like to add personal photos.

Buffy Thu 03-Oct-24 04:59:05

You are all amazing people!

HelterSkelter1 Thu 03-Oct-24 05:52:09

gentleshores you are talking..that's great. Keep that up. You are giving your grandson a home..that's wonderful. You are writing down for us to read your problems and sadness..that must be helping you such a lot to get it out. Making wills takes many many people a long time to get round to doing. So that's not unusual. I can't write that without thinking Tom Jones!
Is there a charity related to your type of illness? If yes their Helpline could help with practical advice with getting help in the house/garden or could perhaps buddy you up with a fellow sufferer to talk to. The fact that you are writing long explanatory replies..which is good and helpful to GNs to understand your situation... shows that you are keen to talk and without family and close friends that's difficult.
I hope you and your DH keep talking as well and start to feel as if you are on the same page about your life together. Moving to somewhere more manageable is a good plan. I expect that will need to take account of your grandson's studies. Ask him for help in the kitchen when you need it. Give him a definite job to do. I know it's difficult to ask for help..I am the same... but he is family and needs to be included in ups and downs. Good luck OP. Keep talking to DH don't keep things hidden and bottled up.

Gingerbelle1955 Thu 03-Oct-24 06:45:43

I used to tell myself he was "good in so many other ways" or "it's just how he is" or "I don't want to be on my own". Well, guess what - in 2020 (yes, right in the middle of COVID) we separated and since then I have lived on my own and it has been the best thing I ever did besides have my daughter. Reading the comments and how people are treated - you deserve better. I know relationships are about compromise but putting up with unhelpful behaviour is demeaning and destroys your self-respect. I will spend however long I've got holding my head up high knowing I made the right move. And yes, I have disabilities too and a garden too large to manage. After shopping around I found a good person who does the lawns and I kill what I don't like in the garden with weedspray. Life is more peaceful and calm. I didn't realise just how much I had given in order to keep the relationship. Good luck and best wishes to everyone who is afraid of making changes. Yes, it's hard but worth it.

HS62 Thu 03-Oct-24 08:10:35

My son was born brain damaged and profoundly deaf. His deafness was diagnosed, but his brain damaged wasn't. I always suspected there was something wrong with him, and with hindsight battled to get him to walk talk use the toilet eat etc. My ex husband never understood why I was so tired or why I cried so much.when my son was 6 and a half and my baby 28 months, he suddenly left us for a relative. He always said there's nothing wrong with our son. 6 months later my sons school rang me and said something had gone wrong with my sons development. All he'll broke loose and 4 years later I managed to get him into a school for deaf children with added disabilities. British sign language is now his first language. I have had to fight education authorities, disability benefits departments and teachers etcetcetc to get my son what he needs. I particularly remember a sister in law reporting 'he's not deaf' when informed by an E.N.T. specialist my son was profoundly deaf. You have to fight everybody I'm afraid. Even your family and partner. It's horrendous, you feel very alone and isolated. His disabilities weren't visible either. When people look at my son they think he is OK. It's all bullsht from other people I can't stand. I've become very resilient and will verbally match anyone that picks on him. Stand your ground, tell your husband in no uncertain terms what help you need and how things affect you. If he's got to go, let him go. Don't have people in your life who are no good for you. I had to let my husband go despite loving him. I've managed to raise my 2 sons on my own who are now in the 30s 40s. I am now 63 but I survived against all the adversity, you can too. Please feel empowered from this, you are important, don't get walkover. Lots of love H.

Rainnsnow Thu 03-Oct-24 08:40:57

I’m so sorry you are going through this, your situation sounds awful. I can empathise with you and am not going to say anything about my situation as you have had other posters highlight theirs and that isn’t helping anyone in this situation. He sounds like a bully and he resents the situation you are both in . Don’t feel guilty about being disabled, try to get some support to chat about your situation. If you are considering leaving he must be hurting you by his words or actions. He’s a taker and you need support and kindness.

gentleshores Thu 03-Oct-24 13:40:45

I am very grateful for all the replies. Still trying to get my head straight on this one. I suppose I could get someone in to put the garden back to how it was, but that would be a bit ridiculous and the garden become a battleground. And that's not me. I am realising I am not quite as feisty as usual as I've felt more vulnerable since the recent setback and being in pain but just getting a bit more mobile. It's all very visible and will make me feel bad every time I see it. It's a difficult one.

gentleshores Thu 03-Oct-24 15:06:33

The problem is I see it as unacceptable and not sure how to deal with that.

Judy54 Thu 03-Oct-24 17:12:08

Is it the problem with the garden that is unacceptable, what would you see as an acceptable solution. You can go on being upset and angry but the only person you are hurting is yourself. If it where me I would try and put it behind me and move on because hurting so much would be impossible for me to deal with on an ongoing basis.

gentleshores Thu 03-Oct-24 18:04:00

It's making big unilateral decisions that's unacceptable. I tried to accept it a couple of days ago but I keep seeing it and it is upsetting. Also it leaves you with a lack of trust - ie what next?

Still talking. And some progress today.

gentleshores Thu 03-Oct-24 18:28:02

He now understands that I have ways of managing that don't fit with some of the changed levels in the garden and agrees that the changes aren't going to work and he just got carried away. He says I can decide what happens with the garden. I said we can have a think about it and decide together. Some can be put back as it was. I said I didn't know how to get past this one and I feel hurt and I think he took that seriously. He also accepted that the changes were quite major, and blocked a path. So I think it will get sorted out.

gentleshores Thu 03-Oct-24 18:29:40

Thank you for the support. It is true I am quite sensitive at the moment as have had a rough time medically the past few months. And I don't like feeling powerless.

Nell8 Thu 03-Oct-24 18:57:06

I'm glad you're managing to have helpful discussions with your husband, gentleshores.

It seems he's not likely to run amok in the garden like a plonker again. While he's reinstating things could he build you a raised flower trough for you tend while sitting down?

Wishing you both happier days.

gentleshores Thu 03-Oct-24 20:47:43

I was thinking of that myself. I said if you'd like a project, some people have raised flowerbeds and described how they were built. I'm not sure if he would though. He said maybe he'd start work on the back door path then. I said NO! There is nothing wrong with the backdoor path. He seems driven to doing outdoor projects at the moment. A bit more talking and it seems he's bored with being semi retired. It's hard as the more unfit and restricted I get, the fitter he seems to get. I might suggest he gets a part time job renovating peoples houses or something.

Poss Fri 04-Oct-24 07:56:40

Lemontart

I feel your pain. I have fibromyalgia, mild arthritis and high blood pressure. I really want to declutter to make the house easier to keep clean and more relaxing to live in but my husband refuses to get rid of anything of his - he just buys more stuff. If he wasn't with me he would be one of those hoarders who live in houses full up with loads of stuff. I used to keep the garden tidy and manageable but can't anymore. He has planted loads of flowers, bushes and shrubs but doesn't keep them under control and the garden is a mess. I tell myself it's a " wildlife garden" to ease the pain I feel when I look out of the window. There are also piles of rubbish under our car port which make me feel ashamed even though it's not my rubbish. When I suggest hiring a small skip or a man with a van ( and a licence!) To help us dispose of it he insists he will sort it out and take it to the tip, but never does.

Sadly, I think I've marries your husband's twin.
My advice for you and the OP - take care of yourself first and foremost, otherwise you will destroy yourself and they will be oblivious to their role in it.
These people, whatever the reason, are selfish.
Please look after you. thanks

Poss Fri 04-Oct-24 07:57:46

*Married. Stupid auto correct.