OH can't handle my illness 😔

[fassbender]

Just that really. Been together for 13 years, married almost 10, two DCs aged 7&5. I already had MS when we got together but it was described by my Neuro as 'benign', however over the past 3 years it has turned progressive and now has a massive impact on my life and mobility (have to use crutches/wheelchair). OH just can't handle the changes it has made to our life - I struggle with everyday tasks, have major fatigue etc. I am so scared for the future, any advice or experience welcome.

So you've been married for a long time and have dc. Your ms was known to him from the outset and even if it wasn't, the wedding vows do mention 'in sickness and in health'.

I have some experience here. I became disabled after an injury three years ago and have been married for 26 years. Luckily our dc are grown up. It's very difficult and I am semi mobile. My DH has very much stepped up and does loads which must be hard and annoying sometimes. He's a practical man rather than emotional so I definitely do not go to him for emotional support and use female friends for this. I try to pace myself,too and not be lying down whenever he sees me.

Can you elaborate on how you feel he needs to support you more? It's a very difficult dynamic.

To get a better picture, what does "can't handle" look like? How does this manifest? Lack of emotional support, unwillingness to help...? Openly unpleasant?

Thank you for your replies. I am a mobile too, to a certain extent; I work 3 days a week as a speech therapist in the NHS, however I am then 'wiped out' for my four days at home. He helps a lot in regards to doing the shopping, walking the kids to school etc, however he resents the fact that we don't have the social life we once had and that I fall asleep easily on the sofa. I try and do as much as I can to keep up but the fact is that one late night will affect me for a week after. I understand that things are different and this is hard on him, but I find it difficult too. I am less independent, and have less opportunity for outside interests due to fatigue levels. DH is in a band and regularly sees his friends; I think he now resents that we are not the same as our friends - going on nights out, going to festivals etc. He grows hot and cold - loving one minute then distant and says things like ' I just wish you had more energy for us' but I use up all my energy just trying to get by! I often remind him of the 'sickness and health' thing but that doesn't seem to make a difference and he will say 'you would find it too difficult on your own' when I tell him to just make a decision either way about whether he can handle it.

Well he needs to decide as you say, he either stays with you and supports you or he needs to go, it's that simple.

I don't really know why he's taking it out on you, sounds like his life is ok.
What a shit when it's YOU going through the illness.

It really is hard. I do sympathise with my DH (although to be clear he very rarely complains at all) because it is a bit crap.

From a practical point of view is there any more that can be cut back in order to leave you with more energy? Claiming pip can enable you to have help in the house. ( Needs a lot of energy to claim unfortunately). Could socialising take place at other times such as the odd weekend lunchtime or can you go to places whereby you can leave earlier?

As above, I do try to act as normal as possible when I can but tbh DH doesn't always get it. It's a long learning curve. Would he go to counselling with you or even just appointments where he can get 'heard', too?

I don't think it's a simple,'tell him to step up or leave.' situation. He has also had to experience illness and change. It's about trying to get support for both of you to negotiate the way forwards,

Jan45 his life is not ok.

he is probably worried sick about the future and the total responsibility he will have to a relatively young family.
The op must be realistic (difficult as this may be) about her current capabilities and the possibility of cutting her current workload.

Joining a local MS support group would provide emotional and advice to both the op and her dh.

op both you and your dh have my sincerest sympathy this is tough for both of you, but as time goes on you will realise how necessary to the health of your relationship that your dh maintains his own interests and that you have complete honesty with each other.

I speak as a bystander to a very close family member and can see the emotional and physical difficulties of both partners in the relationship.

I totally get that it is hard for him, it is as such a shock to both of us that my illness has progressed as much as it has, as I was well for so long and the neuro told us that it was likely to stay that way. I am happy that he has his own interests and understand that it is important for him to have 'time away' from the crap situation we are in. What I do find difficult is the fact that he often makes little remarks about how he does all the shopping, or he wishes I can do more. I do too but I can't and saying it just makes me feel guilty and like I am a burden. I wonder whether counselling might help but I have no experience of this or whether it would be beneficial. Money is tight. I have applied for PIP so hoping that will help if it is granted.

Compared to the OP his life is ok - he seems to still have a social life, he resents the OP not being able to join him, I'm sure she would love to.

My sister in law recently diagnosed with MS, my brother has been nothing but supportive, it's called having your back - I do understand it's difficult for him to adjust to the change, I'm sure it's a million times more difficult for the OP.

Sorry but in my book it is a case of in sickness and health - I think his constant huffing and puffing is probably adding to the OPs stress on top of the illness.

If he really does want to stick around then I think some kind of support would help them both but his resentment of her illness needs to stop, he needs to decide if this is for him, or not, not sure what time frame you put on that but It can't be indefinite.

My heart goes out to you OP....

It sounds like you both need additonal support. Your H is not wicked for resenting the changes in your family, it is very hard to be the partner of someone with a long-term health problem, even more so when it is not particularly 'visible'. It's also true that quite often the sick person becomes irritable or whiny and not pleasant company (which is understandable but still hard to live with.)
It's definitely worth looking into MS-specific support groups for practical advice as well as emotional support - there may be things that can be done such as shortcuts or local services that will help you save your energy.

Before lynching your DH, has he had any emotional support for himself about handling your illness?

I think it's a lot harder for men to speak to their friends or family to talk things through, and certainly he must be aware that he's looking at a future where you become immobile, unable to work, and he will be a full time parent plus your carer. That's a pretty big thing for anyone to face.

At the moment it almost sounds like he has his head in the sand to some extent and is both wilfully ignoring your condition and blaming you for not being well - which is obviously totally unfair.

I think Jan is right that he needs to take a good hard look at the future and say whether he wants to be in yours, or not. If he doesn't, then he doesn't. You will cope. It will be tough, but not as tough as living with and relying on someone who clearly resents being with you

It sounds like you're both finding it hard to cope. That doesn't mean you should be made to feel bad for something you can't change, it just means that you both need support.

The rates of depression and burn out in carers are high, so it's important to deal with this early on and get the help you both need.

There's help and support out there, some of which is detailed here www.mssociety.org.uk/ms-support/for-carers/getting-help

It might even help for him just to join one of the forums so he can talk with people in the same situation as you both, maybe this will help him get things off his chest

Lastly though, please please don't feel guilty and like you're a burden. You're not and I'm sure he doesn't feel this way, just is scared and anxious about changes going on that he has no control over.

I hope things get better soon I really do

Thank you all, all your views and advice is very appreciated , I know our local MS group meets up on a day that I am normally having to work, but i think that I will contact them to see if they can signpost me to other support services.

I think you sound amazing. Contacting that MS group would be a good move.

I have followed a thread on another forum about a lady whose husband has been diagnosed with something similar. She is having similar reactions to your husband. She is finding it harder than he is grieving their former life and panicking about the future. I think she needs to go for counselling to come to terms with it and work out how to cope/help her husband. Do you think that your OH would do counselling?

On a more practical note, could you get shopping online so he doesn't have to?

I have fibromyalgia and changed to on line shopping - its a blessing. And saves money.

I actually do an online shop once a month, it's the weekly 'extras' that he gets, plus other jobs (eg post office). I appreciate him so much. We've had a good chat tonight and I think it has helped. Thank you for all your advice and experiences.

I agree with your assertion op that he needs to shit or get off the pot.

I do not agree about 'men' being precious little darlings who shouldn't be expected to take responsibility for things that are hard.

This is a hard situation for all of you. It isn't ok for him to choose not to do anything about trying to make it better. You can't help the fact you are iller than you expected any more than he can.

The vast majority of people find it hard to confront the fact they need support because it is a difficult thing to face up to. It's not a men from Mars womb from Venus thing when is it?.

His options if he is finding it hard are;

Blame you and make you responsible for his happiness.

Step up and decide to do something about making things easier for himself.

One is easier than the other but definitely more damaging for everyone involved. If you start trying to be responsible for his feelings and improving his situation out of guilt for being ill all you will do is delay the inevitable consequences of him not taking responsibility for himself IMO and set yourself up for a lifetime of being blamed/taking responsibility.

He is an adult. Having a penis doesn't mean he has it harder and deserves special treatment, he needs to sort himself out. That doesn't mean he shouldn't have your support but you should not get into taking responsibility for him either out of guilt or because he is a man.

Offred, well said, I hate how some posters on here seem to think men should get an easier ride than women, why?

What happens when as a couple you grow old and one inevitably gets ill or worse, do you just decide you want out there and then, that just implies you were never really 100% committed in the first place.

Where has anyone said that because he's a man he needs to get an easier ride

Who has said men are precious little darlings who shouldn't take responsibility?

Grays, it's my perception from being on this board for a long time now.

I also think in society in general the woman is still seen as the carer and the man has the freedom - in a relationship it should be 50/50 regardless of gender.

Just my observation, not really that confusing is it?

I think people seem to forget that illnesses not only effect the sufferer but the people around them. That is NOT to say the person going through it should feel guilt, or have extra responsibility. It's just acknowledgement that it effects everyone. This is acknowledged also by the NHS who have done studies into the effects of caring, and have found it can negatively impact mental and physical health, as well as relationships.

69% found it difficult to sleep because of caring
82% feel more stressed as a result of their role
73% felt more anxious
50% are affected by depression, thought to be a result of the role
61% of carers felt they had reached breaking point
54% sturggle to pay bills and make ends meet
41% of these carers say that their job has been negatively affected by caring
33% found it difficult to get practical support because of the barriers to services

And it's all well and good you saying he should just sort himself out, it's not that simple is it? I've spoken with carers who felt guilty for needing support. Who felt they didn't deserve it because they weren't the one who was ill. They felt taking the time to get support would take time away from the caring. They were worried services may judge them. People end up in hospital themselves before getting any help. And I don't know if you've heard, but the NHS struggles to support the ones who are ill never mind their families too.

The thing is offred you turned this into some sort of feminist argument, which I think is quite ironic because I expect if this was a woman struggling to cope with her DP's condition you would be much more sympathetic.

Just my observation, not really that confusing is it?

Are you always this snotty or just when you're online?

Turning this into a gender issue is diverting from the point at hand and not fair to the OP. What you've seen on the board isn't relevant to her situation, no matter how you try and spin it as 'poor man can't cope'.

It is a gender issue and I've made a fair point, you disagree and have now become personally insulting,

Yes it's incredibly relevant IMO.

Never been called snotty before, is that not when you have a runny nose, it is here in Scotland.

If you're going to speak to people like that expect to be called out on it, don't play the victim and claim I'm being 'personally insulting' after you've tried to be passive aggressive and belittling with your little 'not really confusing is it?' retort.

Not everything is a gender issue. This is an issue where someone is finding it difficult to cope with a change in his life due to his wife's illness. The fact he is a man doesn't turn it into a gender issue.

Your agenda has allowed you to turn this from 'carer needs extra support' to 'he is a man and wants everything done for him'.

Out of interest have you ever been a carer and suffered from the stress and anxiety that can accompany it?

Or do you believe it's only men who find it hard?