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Original poster

Partner with chronic illness

36 replies

greatBritishBogOff · 18/09/2017 20:58

Testing name change...

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Original poster
greatBritishBogOff · 18/09/2017 21:08

Desperate for some help/support/advice. DP has a condition similar to MS. I feel like I can't deal with it anymore. The changes to his personality. He tries so hard, he loves me and our DCs so much but he is so difficult to live with.

Where to start. He can't work anymore. He doesn't see anyone as all his friendships have drifted away. He does my head in SadHis world has become so small. I'm outgoing, sociable and live a normal life, often as if I'm single (I don't mean that in terms of other men, just doing things on my own/with the kids).

He's so grumpy, so often. With me and the kids. I'm terrified they'll grow up with this over shadowing their childhoods. We can talk about it when he's feeling ok but we have yet to find a strategy that works to manage it. Best we have is he recognises he's in pain/exhausted that he takes himself off to bed. It often fails though as he leaves it too late. So many events are utterly ruined by his moods/anger (due to pain).

We haven't had sex for nearly two years, he wants to, I just don't. Not At All.

I just feel so depressed that this is my life. I love him deep down but feel so angry, annoyed, miserable and ducking fed up with his condition (him). I don't know what I want, just a rant I guess. Sometimes I just smash a plate or cup in the sink when everyone is in bed (he goes to bed with the children). Is this it?

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Original poster
greatBritishBogOff · 18/09/2017 21:12

And I'm constantly aware that life is MUCH harder for him than me, so no matter what I'm feeling, it's secondary to him as he has to live with this, his life is basically ruined and he had no options. It's just so fucking shot. I've been positive about it for 10 years but just feel worn down and defeated

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Original poster
greatBritishBogOff · 18/09/2017 21:50

Does anyone have any thoughts on this? I need the collective wisdom of this section 🙏🏻

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thistoosha11pass · 18/09/2017 21:55

No experience, just wanted to offer sympathies, it sounds shit for all concerned Flowers. Do you want to stay together?

Mustardnowletsnotbesilly · 18/09/2017 22:01

If he has chronic pain has he been on a chronic pain residential course. The NHS do them at St Thomas' hospital in London and elsewhere and it has been very helpful to a friend of mine, to gain back control of her life. You need to look after yourself, go and see your GP and off load and see what they can offer. You may need counselling both separately and together to go on. You have to have a happy life too, you deserve it.

mrsharrison · 18/09/2017 22:05

My immediate thought is reviewing his pain management. I'm guessing he sees a specialist - could you both go along and look at the options? Chronic pain is exhausting and will severely affect his moods. I don't see anything improving until his pain is controlled. I admire your strength in dealing with this.

Offred · 18/09/2017 22:06

It's hard to advise really because without knowing what the condition is and how the condition affects him it's hard to say whether he could manage it better.

The thing is though frequently people tend to attribute every single bad behaviour to someone's health condition when actually they are just an arse.

I have MS, I'm a LP with four kids. I'm not grumpy even if I'm in pain. I have to manage it properly because if I don't there is no-one to pick up the slack but then MS is very variable so he may have more symptoms than me.

My mum has sarcoidosis and manages it very poorly - she will not be sensible about it or accept limitations and I would find it very hard to live with that because the result is she's often burnt out or very unwell unexpectedly.

PurpleDaisies · 18/09/2017 22:09

It's really hard. Flowers

I've been the one with the chronic illness (I was lucky enough to recover) but I know how hard it was for dh.

Have you considered whether you might have slipped into clinical depression? It might be worth speaking to your gp.

Mercedes519 · 18/09/2017 22:10

I feel your pain because I'm in your position. The first thing is that you have to stop thinking that you're not allowed to think this is shit (as it's much worse for him etc.). Yes it is shit for him but it's shit for you too - you didn't sign up for this either!

I could share so much more - I think I am further in than you and have found a (kind of) peace with the balance between being a carer and a wife. But it's been bloody hard - you have my sympathy.

Musicaltheatremum · 18/09/2017 23:35

I really feel for you. My husband had a so called "low grade" brain tumour for 12 years before he died, the personality change was horrendous. I'm still, 6 years after he died, dealing with the guilt of the way I felt at times as he couldn't help it. There's a really good book I read called "The selfish pigs guide to caring" written by a man whose wife had dementia it's poignant and funny but very honest.
This isn't what you signed up to is it? It's really hard and MS is a horrible disease. Can you get some counselling to help deal with your perfectly understandable feelings. Flowers

toffeeapple123 · 18/09/2017 23:39

Don't feel bad. You're only human. These feelings sound normal as you try to cope. Get some help and support.

StevieNicksMirage · 18/09/2017 23:45

If your situations were reversed and you were the sick one, what would you want your DH to do?

RunRabbitRunRabbit · 18/09/2017 23:50

So many events are utterly ruined by his moods/anger (due to pain).

No! Being in pain does not make you spoil events for people you love. Well, maybe once or twice but then you manage the situation so that never happens again.

I know people living with horrible conditions that have them in chronic pain and exhaustion. They go out of their way to minimise the impact on their loved ones. They are not arses.

He's being an arse. Being ill isn't a blank cheque for being an arse.

You don't have to take it.

Nix32 · 18/09/2017 23:55

I could have written your post. I'm in a very similar position and share your concerns about bringing up children in such an environment. No words of wisdom but lots of sympathy. It is utterly shit.

Mamamagellanic · 18/09/2017 23:56

This happened to me, only I am the chronically ill person.

Being made to feel like a useless, miserable, let-down burden made me so depressed I finished the relationship.

I've never been happier.

Maybe it isn't the illness making him so difficult to live with, maybe it's the way you're making him feel.

Original poster
greatBritishBogOff · 19/09/2017 07:05

Just woken up, thank you for all the replies. I'll read through them again shortly (I'm on my phone).

I think some of it is the way I make him feel but it's a very blurred area as I feel like I do because of how he behaves (which I put down to his condition). He hates everything being blamed on his condition. I understand that as it suggests he can never have a valid issue. It would be like any complaint of irritation I had being put down to my hormones! However I see how his personality has changed and I know (think) 'he wouldn't have been like this before'. The alternative is that he's turned into a horrible person and I just don't think he has.

He absolute needs to manage his condition better. He's hopeless at it, like a child. He has had no pain management help, I'll see if he'll look into that.

Do I want to stay together? Yes but frequently, no. I feel like the condition. Has ruined our chance at happiness. I'll go on the PC later and go through replies properly. I'm sorry for those of you going through through this, either as the sufferer or the partner. I'd love to keep this going as a source of support, I feel I can't be honest to anyone about how it is.

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Offred · 19/09/2017 07:10

You desperately need to be honest about how it is. He does too though.

With any health issue whether it is mild depression through to terminal cancer if you are married and/or have kids you have a basic responsibility to manage it as effectively as you can and at the very least be honest with yourself about how it affects you - this is what I struggle with with my mum.

It's very difficult because she won't take responsibility for managing it it becomes everyone else's responsibility to guess how she is feeling and nag her to rest/sit down or let her off things she's agreed.

Original poster
greatBritishBogOff · 19/09/2017 07:55

Exactly that! He gets very angry/upset when I talk about how it affects us. He desperately wants me to be happy and he feels so useless already. It's a shame it makes him react angrily though. I feel I have nothing to lose though, to tell him

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Offred · 19/09/2017 08:01

You need to tell him that by not managing it properly he is making it into your responsibility to manage, that you understand it is difficult to integrate disability into your self image and maybe he needs some counselling to help him with this but that he really needs to get out of this cycle of not managing it properly and then feeling useless.

Offred · 19/09/2017 08:03

The limitations of disability are there whether or not you acknowledge them. If you don't acknowledge them yourself you make yourself into everyone else's burden, which I'm sure is his absolute worst nightmare.

Offred · 19/09/2017 08:06

Coming from your husband's side I can tell you my two worst fears are; 1. Being a burden on other people and 2. Constantly having to ask people to accommodate my disability (which makes me feel like my disability defines me).

I have had to get over 2 to a certain extent to avoid number 1.

Original poster
greatBritishBogOff · 19/09/2017 08:23

Number two is something that trips us up constantly. He seems to want me to be a mi d reader to enable him to avoid having to say 'no' to anything ('can you just help me with...? 'Can you just quickly do...?' Household jobs. Sometimes he's able, other times not.

There are the usual niggles/dynamics between a husband and wife re childcare and housework and so that complicates things as I won't be stuck with 'wifework' but have to try to untangle what is that and what is his disability. He doesn't know half the time either Confused But he HATES being put in a position of having to say no to helping/mucking in when he feels I shouldn't have asked, as that day, that moment, he isn't up to it! But next time he might just be being idle/oblivious. Do I never ask? Always ask? Ask for a running commentary on his condition?! It's impossible! Thank you SO much for listening, it's a great help

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IrenetheQuaint · 19/09/2017 08:29

The answer to your last question is that when he feels well enough he should be pro-actively doing childcare and housework, so that you don't have to ask him every time.

Offred · 19/09/2017 09:06

Ask him what he would do if you had died and he had to run the household by himself?

If that happened he would have to start thinking more sensibly and communicating more effectively about what support he needs.

You could also apply to the LA for a carer's needs assessment which will look at what you need support with re caring for him.

user1499786242 · 19/09/2017 09:26

I have chronic pain and it limits me so much
But it's my life goal NOT to let it ruin my families lives
I try my absolute best to be happy and positive for my kids, when in reality I want to curl up in bed and scream
I also try not to take my frustrations out on my partner as I know he struggles, he didn't sign up for this
My pain is actually from having children so in a way it's easier because he knows it's OUR problem as they are OUR children!
I really think he should seek some counselling and some better pain management!
I know the NHS can be utterly crap at this though

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