DH arthritis or laziness

[gentle389]

DH has very bad rheumatoid arthritis, his knees are at risk of collapsing and within the next year will have to have a knee operation. DH whenever he wants a drink will always ask DS who is 21, for example can you make me a cup of tea/coffee, get me some peanuts. Often when DS comes downstairs the very first thing DH will say can you get me something. The reason why he asks DS is I sometimes am not as willing to do something, I've said sometimes to him why don't you get up get it yourself, DH very rarely makes a cup of tea, DH will respond saying why I'm being nasty and don't you know how much I'm pain in. I work 12 hour shifts in factory so I've mentioned how my legs and back are aching too and Dh has responded saying it's nowhere near as bad as having arthritis and I'd like to see you have this pain 24/7.

I definitely am guilty of sometimes not realizing how painful it can be to have arthritis but I don't know whether DH is capable of doing a bit more or whether I'm being unreasonable and and not understanding how much pain DH is in.

I have RA and my life revolves around it. Painkillers, mobility aids, adaptations to the house, I even bought my last car with my rheumatoid arthritis in mind. Actually, my house was bought with it in mind – no steps/stairs.

I had a double knee replacement, and, yes, it makes a difference, but once you reach that stage only so much can be done.

So, yes, I have sympathy for your husband. But, he must be encouraged to take responsibility for his needs.

I am sure your DH would rather be independent and not ask for help. I have a long term chronic disease that limits me and sometimes I just can't stand it. I feel like a burden. Sick and tired of being sick and tired is a true statement.

I agree with posters who say set up a table or dresser or something close by his comfortable chair. Have his favourite drinks and snacks there. A hot water pot is great. You could even put a mini fridge there. I know it may not look the best but your DH will adjust and feel more independent.

take responsibility for his needs. I'm sorry, I just realised what a self righteous prig I sound like. I apologise to both you and, especially, your husband. I am mortified.

@gentle389

I definitely need to be more understanding of DH and how much pain he's in, it's difficult when someone's in a lot of pain and the result is seeing someone be nasty and not nice. DS is more sensitive so when DH shouts at him he get upset by it but DH says DS needs to toughen up as he must be living live the life of riley with no pain or anything wrong with him.

DH doesn’t get a free pass to be nasty.

What is he adding to your life?! Don’t feel you have to stay with him.

@CatAlice

I have RA. The pain is worst of all in the morning. Sometimes the morning starts at 2am. It does get better as the day goes on but if he is vlise to having surgery that indicates horrific pain. You cannot compare it with a days work aches and pains. I'm ok atm but at it's worst I long to be able to let friends and family feel what it's like. Chronic pain sucks every scrap of joy out of life. You learn to bite your tongue and not complain all the time because however much they love you your family doesn't want to hear it. Having said all that one thing that makes it worse is immobility. He should do his best to gently and slowly move around.

Yes. I suffered with RA for many years and am currently in remission but I’ll agree here. Although the pain can be agony, staying immobile is the worst idea. I used to go down the stairs on my bum when my legs wouldn’t unfold.

There are definite cycles in the day - pain used to be worse at night and in the morning for me.

Just because your aunt was able to keep mobile doesn't mean everyone else with the same condition is able to. It affects everybody differently, with different symptoms and to different degrees.

Yes, I know, I have other relatives and friends with RA, but they don’t behave like man. So he can work but never get a cup of tea for himself at home? Ok

See post above from @thebookworm1, about staying immobile being the worst idea.

@Meraas

Just because your aunt was able to keep mobile doesn't mean everyone else with the same condition is able to. It affects everybody differently, with different symptoms and to different degrees.

Yes, I know, I have other relatives and friends with RA, but they don’t behave like man. So he can work but never get a cup of tea for himself at home? Ok

See post above from @thebookworm1, about staying immobile being the worst idea.

I'm sorry but you really don't know what you're talking about. For some people, including the poster you mention, staying active is best. Brilliant! For others it isn't - I'd hazard that if your joints are at the point of collapse like OP's husband's are, then maybe rest is good.

If you don't understand why someone with a chronic illness of which chronic fatigue is a common symptom feels unable to make themselves a cup of tea after work then it's clear to me that you lack the understanding you think you have.

@minatrina Actually staying active and mobile despite tiredness is a medical recommendation for people in RA, although that doesn't always mean putting pressure on any particularly vulnerable joints.
It is thought that inactivity in arthritis actually exacerbates the fatigue.

[quote Iris2020]@minatrina Actually staying active and mobile despite tiredness is a medical recommendation for people in RA, although that doesn't always mean putting pressure on any particularly vulnerable joints.
It is thought that inactivity in arthritis actually exacerbates the fatigue.[/quote]
That's just not the case for everyone - I know this because my own rheumatologist explicitly recommends that whilst staying active won't make my arthritis worse, it certainly doesn't make it better so there's no point putting myself through unnecessary pain. Everybody's AI diseases and RA are different and it can have different impacts on the body, mind, and crucially the surrounding tissue of the joints affected. You can't make assumptions about everyone's disease based on the experience of one or two people!

[quote Iris2020]@minatrina Actually staying active and mobile despite tiredness is a medical recommendation for people in RA, although that doesn't always mean putting pressure on any particularly vulnerable joints.
It is thought that inactivity in arthritis actually exacerbates the fatigue.[/quote]
Well my bones grind together when I walk so I don't think it does me much good

@LST haven't you heard? All RA is the same and we must listen to blanket recommendations based on the experience of someone's second cousin twice removed

@gentle389

Oh no I sound awful, of course most of time I will, I think it's just how much he asks for people to get. DS will be upstirs in his room watching something on T.V, he'll ask DS for a drink and then 20 minutes he'll ask DS again can you get me some biscuits, sometimes it just seems constant, then 30 minutes later he'll want another drink making.

Yes you do sound awful, completely heartless in fact. I am truly shocked at your callousness. He is not even asking you to do anything, he has given up asking for help from you, he is asking his son to help, not sure how that is exhausting for you. Hopefully your son is a little kinder than you. I hope you take these responses as a wake up call to take a good look at yourself and how you are treating somebody you are supposed to love.

@minatrina sometimes the "point of putting oneself through pain" is to avoid becoming a disproportionate burden to those around us and continuing to do our part to carry our lot, in society.

It's impossible to know how this applies, or not, to the OP's family - whether the husband is doing as much as he could by going to work, or whether he is asking for too many cups of tea without realising the impact or making reasonable arrangements to be able to service himself, or whether the OP just doesn't support her husband adequately or compassionately.

But certainly, we cannot use minimising our own pain as the sole benchmark of what is reasonable. Society cannot function that way. Neither does having a chronic pain illness give us a free pass to never push ourselves, and expect others to consistently accommodate our needs at their own expense. It's not a clear-cut situation. Compassion is needed on one side but self-discipline and awareness of others is needed on the other. In this case, it sounds like the OP's own mental health is being affected too - which one is to be the "selfish" one and expect the other to accommodate? Arguments in favour of limitless accommodations face their limits when everyone claims them.

As someone who has struggled with a string of auto-immune conditions over the years including bouts of severe RA, I believe strongly in continuing to the best of one's ability to live in a way that minimises the impact of one's condition on those surrounding us. It benefits us in the long-run, with families and friendships being preserved and there for us to enjoy in the periods of relative relief.

Not to mention - just being the right thing to do. Sometimes the right thing to do is hard, but you still have to do it.

I have it. And sometimes it's excruciating. However, asking for things every 30 minutes is unreasonable from him. A thermos flask if his hands can manage it or similar with whatever mechanism he can manage holding 3-4 cups and a basket of food will reduce this for like zero effort. Or a one cup kettle on a table so he can make fresh whenever he likes.

Sometimes I can't even operate the top to put water into my one cup. It's royally shit but the world doesn't revolve around one person in a family when some changes could be made to help 🤷🏻‍♀️

I normally all the time help him and do things for him, he asks both me and DS for help which we both happily do. The comment I made about why don’t you do it yourself was after a 12 hour shift at work and which I apologised to DH for saying as it was not nice to have said.

@Iris2020 I suspect we have very different families and support systems around us as I really cannot relate to what you're saying.

At no point did I argue for "limitless" accommodations for this man, I was simply trying to correct misinformation. Going round perpetuating the idea that people with chronic illnesses will be fine if they just "get on with it" is really not okay.

@minatrina I do get it, I'm a carer for my mum who has arthritis and other conditions. I do all her shopping, take her to all appointments, take her out in the car, go out walking with her in case she falls.

I just don't think OP should accept her DH being nasty to her and him treating his son like a servant.

YABVU.

@Meraas I'm glad you do so much for you mum. I don't see why that means you have the authority to make sweeping statements about medical conditions that are literally not true.

I don't think I have made any sweeping statements?

You happily help, although you also say that you're sometimes not willing to, and you're on here about whether he's just lazy?

Right.

@Meraas

I don't think I have made any sweeping statements?

You made a statement that being immobile is the worst for people with RA, which is absolutely not true for everyone, and you said that you don't understand why OP's husband can go to work but then be too tired to make a cup of tea.

If you don't understand how chronic fatigue manifests, it still means you don't understand RA or autoimmune disease in the way you think you do. Just because you know people affected in one certain way, it doesn't mean everyone is affected in the same way and it certainly does not make you particularly knowledge about RA.

For example, I care for my grandmother who has dementia. Does that mean I go round telling making statements about the best way to act if you have dementia, or use it as some kind of signal that I have any particular knowledge about dementia? No, because I don't know much at all about dementia, I just know about my grandmother's dementia.

Actually I quoted a person upthread with RA who said staying immobile is the worst idea.

I take your point that everyone is different, but I do worry for OP's health too. Working a 12 hour shift in a factory and having to wait on her husband who jokes he has waiters.

@Meraas yes... that's my point? You reiterated what they said.

But yes I agree that OP sounds like she's not coping well and I never said otherwise. Judging from her follow up comments, I think she's probably more empathetic to her husband's situation than she initially comes across in her original post. It sounds like her family need some help from a support groups to find ways to manage better.

OP, I wonder if your husband's rheumatologist has any contacts for therapists or support groups? I know I always come away from my appointments with handfuls of leaflets and business cards, but I do have to travel to a large specialist unit as my arthritis and AI disease is quite unusual and they like to do different tests and studies on me lol. So I don't know if they're more well connected than other departments? But perhaps you can find a local group on google at the very least, or there is always national online groups on the likes of Facebook.

I have severe RA too, 20+yrs and I do think it can be hard for people who haven't got it to understand the unrelenting pain, the exhaustion, physical and mental drain however I know it's not easy on family either and you need to work together to ease the burden on everyone.
I think you need to have a frank discussion- the 3 of you, your DS is an adult and affected so should be included.
You need to work out how to make DHs life easier - several suggestions have been given, discuss how the outbursts hurt DS, I understand how difficult it can be and I must admit that I have exploded once or twice (probably a few more times with DH) as it's become too much but I try my best to not or to at least explain and apologise- my kids are much younger so it's a bit more tricky. I have had times
Then work out a plan so that you & DS can do things you want to do too.
Unless you have a firm date for surgery it could be some time unfortunately and you cannot put your lives on hold permanently or you will grow to resent each other.
DH could spend time with a friend or family member or you could set up things so he can manage alone for a bit.
So basically I think everyone needs to talk more and also understand better because this isn't easy for any of you and isn't going to go away any time soon.
Your DH also needs to explain to his drs he is not coping because if this is a regular thing then he clearly isn't and just waiting for surgery isn't going to help the root cause.
I am surprised he's just on minor pain relief if he's in this situation and no disease modifying / biologic therapy or anti inflammatory apart from steroid injections.
I know it's been a hard year or so for treatment but nagging drs is often the best way to get through that you aren't coping and need assistance.
I'm sorry you are going through this I wouldn't wish this damn disease on my worst enemy.