Partner with chronic illness

[greatBritishBogOff]

Testing name change...

I also have chronic pain. Pain management courses can be helpful but only if you really do want to change as they are very much based around how you deal with life and your condition. In a group of 8, I can honestly say I think I was the only one really receptive to the mindfulness and activity pacing we learned.

If he's not working he can rest and do therapies when the family are out and save himself for times you are together. I would just ask him if he is up to doing x or y in a very matter of fact way.encourage him to seek solutions rather than look for snags.

It is crap but like pps, I try not to mention it much and certainly try to never let it affect the way I react to others. As you've discovered its the quickest way to drive people away.

Try to keep communication open and consider seeking advice on depression and this is very much linked, unsurprisingly.

Good luck.

I think counselling is a really good idea, for us as a family. His relationship with dc1 (9) is not good. Dh is so irritable and snappy with him because he is a lively, impulsive, energetic (and probably quite annoying, full on) child. I can see they're in a vicious circle though.

I feel I have nothing left to lose by talking to him openly and honestly about how I feel, and about how it impacts the family. I know that he fears that his condition isn't compatible with family life and if that's the conclusion we come to when I'm really honest with him, then I guess it's the right one. I hope we've got more we can try though, with better treatments, pain management, counselling, and maybe him being better at managing it.

It's changed his personality SO much, it's like I've lost him 80% of the time. It's an auto immune arthritic condition he has.

I have a similar condition and having read your posts, I am very glad I live alone . That isn't a dig at you- more that I don't know myself what I can do, what I can manage- it changes so much.

*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.8

THIS MAKES ME SO ANGRY. Yes, I am sure there are some people who are fucking saints and live in a soft focus Hollywood movie illness - but the rest of us, chronic pain does make you an utter arse. It's hard to see your life and social life and everything else disappear and it can make you bitter that other people can just get on with things.

Nothing to add except my husband has MS and it makes everything so hard.xxx

He does wish he lived alone a lot of the time. He'd sleep or rest all the time. I agree, it kind of does make people behave badly, and it can't really be helped. It just Is.

It's not about being a saint though Jessica. It's about being responsible.

Having a disability doesn't give you an excuse to make everyone around you miserable and being bitter and twisted up about the unfairness of it all isn't a good way to deal with it.

It is a basic minimum expectation of someone that they manage their own limitations themselves. Difficulty adjusting to seeing yourself as disabled, sadness and anger about the unfairness is understandable , for a time, but the reality is this man has a wife and kids. He just has to manage those responsibilities properly. You don't get the luxury of crawling into a hole of pity in his situation.

(And he's very very lucky he has a wife to pick up the slack)

It's not a hole of pity- it's just that sometimes life has given you a shit sandwich and nobody can be that mature or accepting about it.

Many of these conditions also affect emotional processing and mental stability- as I am sure you know- so it's not always possible to manage effectively as one may want.

My husband has MS and is increasingly disabled and I feel all the emotions that you do too. No helpful suggestions I am afraid but a lot of sympathy. It is all extremely difficult, for him, for me and for the children.

No-one is expecting anyone to always manage it brilliantly. His wife is in deseperate need of him mostly managing it effectively and it sounds like he is never managing it effectively at the moment. That is a hole of pity I'm afraid, not managing it properly so it rules and ruins everyone's lives, driving your partner to exhaustion and day dreaming about living alone...

I could lay around feeling bitter and angry and wishing I didn't have this crappy life if I wanted but there would be terrible consequences for my kids if I did, it would be selfish in the extreme (and I feel more disabling than the stupid MS).

(My DH is paralysed from the neck down and has agonising chronic pain.) Chronic pain is a long, hard road, and it's a thorny topic that needs a lot of careful thinking about and often a radical overhaul of operating assumptions. If you can possibly get him into see Dr Piers Lesser; he's the best pain consultant I've encountered. I think he does private practice as well as NHS (not sure - google him).

This might be useful if you haven't read it: pain is weird. He needs to read it too.

Ultimately he needs to do the work and there's not a lot you can do except draw your own boundaries about what you will accept for you and your kids. He might need to live alone. It's not up to me to say, but it IS up to you, just like any other relationship would be. Good luck. I wish you well.