Feel like I’m playing an extra in my husband’s life instead of the starring role in my own.

[HÆLTHEPAIN]

It’s long, apologies.

I’ve posted before about my ‘issues’ with my marriage due to my ill health and lack of having a life. And that my husband has recently taken up lots of new activities, leaving me to do pretty much everything in the house. He does do the dishwasher and remakes the bed (after I’ve stripped it) every other week but the rest of the household stuff, including all the admin, falls to me. I do have cleaners once a fortnight but they only really do surface level stuff and the rest is left to me. Because of my illness, this literally leaves nothing left energy wise for anything enjoyable. I don’t work, my husband does full time but as I say, what I do in the house leaves me with nothing left energy wise for myself. The kids are older now (both teens) so take no looking after but there’s still the general life drudgery that caring for a family brings.

My husband has now taken up 2 extra activities on top of the one I mentioned previously which means he’s now out of the house from early until late every Weds, as well as every other Saturday from early until late and then on Mondays he does a sport for an hour but is out of the house for 2. This also means that the other days he ends up working later to catch up on things he might have missed on the Mon and Weds. As well as the fact when he’s out running, he’s up and out early so falling asleep as soon as he’s had food on the evening.

As I said in my other thread, and in the interest of fairness, he has taken up the activities because of a T2 diabetes diagnosis and I get that he needs to be active and it’s great for his health. That said, it’s like that’s all his life’s about now and he’s out there getting a life while mine’s getting worse but I feel like I make sacrifices for him in terms of my health by doing what I do in the house, yet he doesn’t sacrifice anything for me. Yes, he works, and I know that’s important, but he’d be working anyway.

I’ve previously asked him to take some of the slack in terms of the household stuff but he’s always said it’s too much and he has nothing left in him after work. I never pushed back on that because I thought it was true. But now he has enough energy and inclination to take up all these new activities.

I also suggested we join a local health club so we could do something together as I could manage the normal pool and hydrotherapy pool (we can afford it) and because I wouldn’t be physically able to go without him. He said there’d be no point as he’d not be interested in the gym or pool aspect.

Like my title says, I feel like I’m just an extra in his life but my life is just fading away and I don’t know what to do. Also, sorry for rambling!

Please help.

Can you find an activity that you would like to do?

Is it that you want to be doing stuff together but he's busy / has no energy, or do you want to find something for yourself.

Increase the cleaners with the gym money to weekly. Or could you pay for a carer to take you swimming ?

If it only needs cleaning once a week then that's fair enough, but I would be surprised (in a good way)

I hear you as I was you a couple of years ago. I can confirm it never gets better until you start doing things just for you. What I have done this past year:

I'm divorcing my H as I lived a single lonely life but with double the responsibilities and cleaning (he's a slob). Mentally that gave me a boost. I did have to thoroughly investigate how I could survive physically (I struggle to cook) and financially without him, but it is just about doable.
I found a local place that did chair based exercises once a week, that's helped build up my muscles. Mentally that gave me a boost too.
I found a local pain support group. We don't actually talk about our conditions but we all seem to leave the meeting laughing our heads off. Is there something like that for your specific health problems? Or even a knit n knatter group? It's provided my mh a massive boost.
My diet was awful so I take a daily multivitamin and iron. I can see a difference in my general energy and that gave my mh a boost.

You see what I'm getting at? Start getting yourself in a better place, throw money at the problems of cleaner every week (or twice) since you have some, tailor your exercises so you can do them alone like chair based, get taxis, get counselling to pinpoint what is sucking the life/fight out of you, get a hobby that involves chat with others eg WI. It can be done

How old are you op? Could menopause adding to the fog and lack of motivation?

Kindly I think you need to take responsibility for your life. There will be options so commit to take a step on that direction

Is there anything stopping you from finding a new hobby or activity?

And prioritise that over housework if you have to. Get the cleaner in more often if you need to.

Get the teenagers pulling their weight too - it will help you, it gives them a good grounding and will make their journey into adulthood easier.

I used to be resentful of my DH's hobbies (which weren't unreasonable - he pulls his weight at home, without any doubt, never neglects home stuff for hobby stuff). In the end I found myself a new hobby, love it, and no longer resent his hobbies. He wasn't doing anything wrong. If I wanted to my life to change, it was for me to change it.

If your DH is genuianly not pulling his weight - if if he's taking the mickey and off all the time having fun leaving you with home / children, then you have to decide if you're willing to put up with that.

So we have a man needing to provide a life for a wife on this thread, then we also have a man needing to provide financially for a person they dont live with who is a fully grown adult

when will women accept the part in being a grown up, and if you are spending so much time with housework on the place maybe downsize?

Realistically the teens should be pitching in with the family - washing up, laundry, clearing up after dinner, changing their own bedsheets etc. All the things the cleaner doesn't do they should be helping with so there's very little physical work for you to do

You can then concentrate on using the energy you have for your own stuff - whether that's exercise, study, seeing friends.

You're not 'starring in your own life' because you're making yourself play the role of housekeeper. If you want to be centre stage, you have to choose a more exciting role for yourself, even if it's just a small one to begin with - two hours a week volunteering in the local charity shop, a session in the pool, a book group.

It still shouldn't be beyond OP, she can pace herself.

Not all women. Remember how everyone has to be super careful to say SOME men when there’s a thread about bad shit men do? Well maybe pay women the same favour. I’ve been supporting myself since I was 16. Also, we don’t even know if he is supporting her, she might be getting benefits for her health issue.

OP, I really don’t understand what you want here. Your husband works full time and has a few hobbies. Are you upset that he doesn’t spend more time with you? Or is all just about you not having hobbies, because you can change that. You don’t work, have a cleaner and no small kids at home, of course most of the housework should be covered by you, but that doesn’t mean you cant have a day a week doing a hobby too, the world won’t end if you don’t do any cleaning for one afternoon. Also, why aren’t your children doing anything? They should have jobs to do as well.

Thank you so much everyone. I accept all of the points of view and it’s refreshing to hear because when I speak to my friend who I confide in, obviously she generally ‘sides’ with me because she gets it regularly, if that makes sense?

To answer some questions - I have ME and Fibromyalgia. The ME is my worst illness and it’s the unpredictablility of it that’s probably the most frustrating part. I did start going to a hobby class a year or so ago but when I went through a significant flare, I had to stop going because I was too ill.

Someone mentioned my time management but it’s not time I’m struggling with, it’s energy. It’s hard to explain to someone without ME but even doing one thing chores wise - like say putting washing on the line - can leave me exhausted and needing to rest. Some days I can do that and something else and something else again and be ‘ok’. The same with anything mentally taxing too. I do all the budgeting stuff and all the grocery shopping/meal planning/remembering everything we need. And yes, to outsiders, that may not sound like much but for someone like me it can absolutely deplete me. We went to his friend’s wedding on Saturday and I am still suffering now. We sat on dining type chairs for most of the afternoon evening and my legs are agony, as well being stuck to the sofa.

I mentioned on my other post that the first thing he’d taken up was something I always wanted to do when the kids were smaller and he wasn’t interested then, so that really felt like a smack in the face and still does every time he goes.

I can drive but I’d need help getting into the place and pool, hence why someone would need to help. I chose the spa place as it’s generally quiter than the public pool and not much more expensive if you use it regularly.

I recognise he’s got to do his own thing and it is good for him, and, despite how I come across, I am proud of him.

I do feel like we’re less connected than we used to be because of all of this, like someone mentioned. It’s just the whole “I’m off doing this and I’ll see you when I get back” that makes me feel like an ‘extra’. He’s away with work tomorrow and has asked me to drive him to the station in the next town, 30 mins away, at 7:15. That will have a knock on effect for me for the rest of the day. This doesn’t happen often but is an example.

It’s probably the change in status quo that’s unsettled me too. Previously, we both did our own thing, but not that often I suppose. He’s always done one hobby every week (the Monday one), and then would go out with friends now and then and away with work regularly, which usually involved social stuff as well, which he enjoyed. I would also see my friend but I’d often go to her house for a good catch up and change of scenery. Her husband used to work away but now he’s back and is a bit of a grumpy bugger so that sort of waned a bit. And if we plan to pop out for a bit to eat, I can’t always guarantee being well enough.

Someone asked what I want to do and to be honest, I just don’t know anymore. I think because the illness has taken so much from me I’ve sort of lost who I am. For so long I concentrated on the kids and then I got ill too. I am perimenopausal which of course adds to everything, but my symptoms were there prior to this too.

Also to add. I have always worked up until I left because of illness. I do get some PIP but not loads. I was a single parent before I met DH and I was self sufficient. As with a lot of (but not all) women, when we had our kids together, my hours reduced slightly (to 30) but I did everything for the kids. After my youngest I went down to 25 hours so I could do both school runs and pick up from childcare. So my earning potential reduced while his career progressed.

I probably do have too high standards but I suppose that’s related to my feelings of being able to ‘contribute’. But then even the most basic of tasks can leave me sofa bound.

People need to stop saying it's really long, and then come up with something average, it's really disappointing!

Is this what it's like to date men?!

I don't think it sounds like your husband is doing too much and you do have a cleaner so I think it is more na issue of you needing to find some ways to occupy yourself and build up a bit of your own life rather than waiting for him to come home.

Sorry I missed your updates somehow! It does sound really hard, I hope you manage to find some ways to find a bit more happiness ❤️

Fellow fibro sufferer here, so I get it.

My previous advice stands, though.

I'd also be upset about him taking up the hobby you wanted, but only when you were no longer able to. That's insensitive.

You totally need to reset your outlook.

Find your focus on well-being. Make a little routine that you intend to stick to- some days you won't manage, others you will.
Make it about what you want to do. Do that first.

My routine is dog walk then plan/prepare dinner. Then I work.

After that I do whatever else I fancy/need. Usually it's not a lot but sometimes I'll be able to do some light gardening or read a book.

So pick a chore and a treat that you want to do. Do them first.
Then do housework with what's left.

You can't plan but you can prepare. You won't always be able to do what you'd hoped, but you'll have a bit more control.

Things I've given up- choir, knit and natter, voluntary work, full time work. Concerts, cinema, foreign holidays.

Things I still do- church, cooking (meals not fun stuff), work, dog walk, light gardening, staying in touch with family, occasional book, exercise/health activities (spa, weight management, tai chi).

It sounds like you’re specifically suffering from having family members who’re active and progressing their lives in stark contrast to you being perimenopausal with debilitating conditions.

Can you research a physiotherapist for private consultations who can advise on pacing and GET, spending time and money in the first instance to improve your general wellbeing, with a longer term view towards more independence.

Is this something your GP could help with in terms of a referral, or at least, managing your perimenopause in concert with the ME and fibromyalgia?

Barely anyone has said that he should be providing a life for her. Did you actually read any of the answers or were you too eager to get your poor-men comments in? 🙄

As a fellow ME and fibromyalgia sufferer my previous post stands. I also have lupus and copd, plus other things. You are in a mental rut right now so think long and hard on what you actually want. Then work out a way to get it.

To explain what I mean. What I actually wanted was to leave my H as I was drowning being with him. To achieve that I needed to be physically able to look after myself - this involved research in to kitchen aids for cooking, bathing aids, different car that was easier to drive, online shopping for food, whether the local pharmacy delivered medication etc etc. It also involved getting my muscles stronger so I found a chair based exercise class. After a year of working out the plan I am now looking at houses. My want is nearly here.

Have you been to your GP to discuss different medications or counselling?

You have absolutely no fucking idea of what being chronically ill means.

Perimenopause is a bitch. Been there. It messes with your head as well as your health.

The threat of diabetes is terrifying - my partner has been given severe warnings and saw what it did to his father.

Your DH works full time and is trying to do what's necessary for his health at this challenging middle age time in life. His energy levels won't be what they were and the extra exercise will take it out of him.

He probably is fixed on his own worries and the shock of the diagnosis at the moment.

Not having a job, having more independent kids and having a cleaner would look from the outside like you are having it rather easy.

But your description of the effect of your condition is very enlightening. I can't imagine what ME must be like, and it understand it's difficult to get understanding and treatment for it.

Is there enough income to increase the cleaner's hours, maybe also get more home help to do laundry, ironing, gardening etc? Shopping and meal delivery to your door?

It's time those teens had a good talking to. They need to be doing more to participate in running the house they live in, with both parents having their own challenges. Your worlds have changed, theirs needs to as well.

But I can only suggest that you refine what you've written here about how you're feeling and let him know consistently and calmly what you need. While listening to him about how he's feeling about his diagnosis.

One of the things that radically helped me was giving the DCs their own washing as a responsibility. They took to it well. We no longer run a single sock factory, which was the biggest surprise benefit.

When they left for uni, laundry was already routine.

Could they cook a meal a week? Mine don’t because frankly I am too fussy. But they could.

Sorry it’s long…..

I have ME too.
And I’m going to say: PLEASE STOP DOING SO MUCH
The only thing that is going to happen if you carry on pushing yourself is that you’ll get worse and worse. (Talking from experience here).

You need to put yourself and your health first.
That means your dh needs to take on much more if the day to day stuff.

The reason why your dh seems to carry on with his life is because he is. He is still living his life the way he wants like he was before you got ill. He decides he needs to do more exercise and then just go and does it. He didn’t ask you if this is an issue for you, the impact it could have on you, right? Similar behaviour than a lot of men in a relationship.
But also, he is healthy and him going away and living his life is pretty normal. It will feel shit to see ANYONE living their life whilst yours has shrunk and shrunk. Adapting to living with ME is HARD. Please give yourself some slack there too.

Time for you to concentrate on YOUR life. And to redress the balance re doing stuff around the house so it’s at a manageable level FOR YOU. It doesn’t matter what abled are doing, what they think you should do. The bottom line is that you should stay in your energy envelope if you don’t want become severe. I was (aka I was bedbound) and it’s shit.

Learn about pacing. There are some great groups on Facebook. I’m using Visible (and app following your heart rate) to ensure I’m staying within my energy enveloppe. They have a FB group with great tips.
Contact physio (specialised in ME) or OT to learn to pace (ME Action has a great one. I would fully recommend it).
Oh and learn about PEM

You need to remember that one issue with ME is hypo oxygenation of the cells.
You are trying to do some housework at 4000m altitude. Would you really expect anyone to be able to do it easily? Part of ME is learning to adjust to your new (lower) abilities. It’s hard.

The other side of the coin is: does your dh know anything about ME? Does he know it’s much more than being tired but it’s a neurological illness? Does he know the quality of life of living with ME is lower than someone with cancer or COPD or most other chronic illnesses?
Because I know it took years for my own dh to understand. Even more so because i was masking being ill, always pushing myself (i wanted to still be useful, feeling like I had a role in the family. Because that’s what our ableist society is telling us: you’re worth nothing if you don’t participate) so he only saw someone ‘who is a bit tired and so what?’ It’s only when dh saw me in bed for days that he truly acknowledged how bad things were.

Personally, I just stopped. I stopped cooking in the evening and dh had to cook instead. I stopped hoovering etc…
When i stopped work, my dcs were teenagers and they helped more around the house, incl cooking, pushing the hoover around etc…. All the physical stuff.
I kept doing the stuff I could still manage. The food shop, most of the mental load.

What it did is that a lot of my symptoms eased off and not spending all my energy around the house meant I had some left for myself. Having a bit of energy for myself meant I could have a bit of life that I could call my own. Maybe seeing a friend every now and then. For you, it might be something else (a lot will depend on much you can do).

Finding the right balance is very hard.
Youll need your dh support there. More than he is doing so far.
Youll need to allow yourself to do less too.

But your description of the effect of your condition is very enlightening. I can't imagine what ME must be like, and it understand it's difficult to get understanding and treatment for it.

There is no treatment for ME.
The only ‘treatment’ available is pacing - aka never doing more than what your body allows you to do. Otherwise all symptoms flare up.

Please be aware people die from ME.
The OP is at a moderate level.
Severe level will make you bedbound - unable to stand for more than a few minutes at the time.
Very severe level will make you bedbound but also unable to cope with light, sounds etc….
25% of people with ME are severe or very severe and people move from being moderate to severe/very severe through carrying pushing themselves and/or getting ill (any illness can easily lower your baseline)

Thanks again everyone. I suppose I do need to start carving out a life for me. It really is knowing how that’s the issue, with the unpredictability of everything. Like I can’t commit to a regular thing every week because it might not happen. So I’d need to find something that wouldn’t mind me missing times as and when. That’s the thing that stops me from starting anything new.

@JFDIYOLO obviously I do think he had a shock with his diabetes but to be honest, he’s thriving. He’s physically and mentally got more stamina and ‘go’ about him. He’s not a worrier either. He just sees it as another thing to ‘sort out’ - so he has and it has helped him immensely. And I don’t mean to minimise it because I know the effects it can have - I think I worry more about him than he does at times!😂 As I say, I am proud of how he’s dealt with it even though it might not come across that way. And yes, peri’s an absolute head masher at times.

I suppose the other thing is that I saw us spending more quality time together as the kids got less needy and more independent. But obviously that hasn’t turned out how I envisioned and it’s taking a bit of coming to terms with. It’s also jarring that he can just do these new things without a care in the world, knowing I’ll pick up whatever needs doing at home, yet if I was to do anything, I’d need assistance in some way. That’s soul destroying for me as someone who was always self sufficient and was capable of bringing up my child on my own etc.

I have seriously considered going it alone again and then I’d just have me and the kids to look after and wouldn’t feel like I’m just going along for the ride in his life, but I don’t really know if that’s the answer. We always used to have such a strong relationship and it’s sad to think it might be time to call time on it.

I’m going to have a think about how I can let go of things and maybe lower my standards, and think about the cleaners coming more often.