To give up trying to have a meaningful place in my dcs life

[Amaretto]

So we've had another weekend where DH took the dcs out for their 'hobby' whilst I stayed at home. Nothing else exists apart from that hobby, one that I can't join in due to health reasons.
All weekends, every single weekend, is taken up by that. Events are written down on the calendar and it's just full. The bits that arent (like some saturday mornings) are used to do the food shopping and the like.
I feel like a spare part useful to get some bits and bobs, take them shopping for clothes/shoes and that's about it.

I have tried many times to explain to dh that I want to spend with my own children but it's falling into deaf ears. I've tried to force some 1-1 time with them (like going out for lunch) and I've managed that about twice with each of them in 6 months. There is ALWAYS something more important (like that hobby :(. If its not that, it's going to see PIL etc...). I very much feel I would have more opportunities to see my own dcs if I was seeing them EOW because I coud be in charge of what we do rather than automatically see everything being taken over by DH again.

I feel down and like I never have the opportunity to build up a meaningful relationship with them and never will.

Just read your latest posts, OP. Your DH sounds just like my ex (a v keen fell runner). He believed my crippling back problems were due to my lack of exercise, not vice versa, and refused to help me as I 'didn't help myself'. Only surgery cured me, not bloody fell running! When his father was dying of cancer last year he garbled about how his dad wasn't moving around or eating healthy enough and he'd lost too much weight (he had a feeding tube in and a terminal diagnosis ffs!).

Do your teens socialise with their friends this is their crucial years for forming friendships?

Your DH is the problem, and you know that. In 2/3 years time your DC may well leave and go off to uni. You will be left with a DH who is not kind to you. I’d think about leaving him and try to enjoy some time with your DCs unrestricted by his issues. They can choose to spend time with who they like and it sounds like they enjoy time with you when they have it- so provide a home with fewer rules a TV and some YouTube. Cook with them, ask about their day and their friends, enquire about their hobby. See if they can suggest a way that type B events could happen for them- is it something a friend might be happy to drive them to once in a while, or another adult who is going anyway. Be their friend for a bit. Being able to take part physically isn’t all they need/want from a parent. Book time on the calendar with them so they can see it is a plan- and ask them what they would like to do- even if only 1/2 hr a week. Use that 1/2hr wisely and if they say watch YouTube do it with them and ignore DH.

Good Luck OP. Be determined that 2020 will be happier for you.

Slightly off topic but stick with me...
I have Crohn's disease. I was diagnosed a couple of years into my relationship with my now husband (diagnosed 10 years ago now!). Life changed dramatically and many of the things I used to do and we did together I just can't manage anymore. My husband rationally understands but he doesn't 'get' it. It definitely a grieving process because life changes irreversibly and beyond your control.
Is it possible this is about you accepting your condition and it's limitations as well as your husband's understanding and empathy in relation to your condition?
I very much struggled to get my head round it and still have bad days where I feel left and and annoyed because it's not my fault I can't do X, Y or Z. But then I have to remember it's not his or the kids fault either!
Good luck OP.

How much time and effort do you and your dh put into your recovery from ME?

There are many things you can do to recover but they do take commitment and support from family.

My recovery was hard but made me assess things like my needs not being met, my voice heard in the family. It was painful but ultimately I took big steps to do things I wanted/ needed and dh spends much much less time on his hobbies and now understands that a parental role can be to support dc in hobbies they enjoy and that everyone matters.

Life is so much sweeter, not just being better but because I feel so much more important and powerful in the relationship and family. It's still not perfect and we can slip into old habits at times.

There are lots of steps you can take with rest, pacing, nutrition etc and frankly yoyr dh should be prioritizing helping you find the support and medics you need.

'Quality time' and 'teenagers'? Do those two things go together? Part of me can understand your frustration OP, but I do feel that the problem is more jealousy towards your husband because he happens to do the same hobby as them. I bet they don't actually spend much quality time together when they're running because surely your kids have their own friends there? And they won't all run/ climb together surely? Would you go and sit in the bus stop with them if their hobby was drinking with their mates at the weekend?

What do you expect them to do with you on Saturday mornings? And why does it take so long to eat and tidy up when you get in at 7? Do they go to bed extra early? Whatever you do find to do with them will undoubtedly be constantly interrupted by them messaging their friends/ showing you inane clips on YouTube. Things move on, kids grow up and away from us, and we need to develop our own interests to ensure we give them the space to do this.

@Whatnowagnes, I have and am taking many steps to get better. Nutritionist, acupuncture, rest, pacing ..... All of them have helped in one way or the other. Vit B12 has made a huge difference for me recently (incl for some neurlogical symtoms I was getting). So things are slowly looking up.

DH.... I cant say he has done much to help. He is actually getting annoyed if he sees some of the money I have spent on 'myself' (aka supplements, acupuncturist...) so I have learnt to only spend that money from my own account rather than the joint account.
And still looks at me baffled when I point out lunch made from a cheese sandwhci and crisps isnt going to work me (Both guten and dairy are making me much worse. He has known that for the last 3 years).
And him stepping up re HW or parenting meant ... taking the dcs to The Hobby (because he enjoyed it) and doing some of the cooking. Heavy cleaning was sort of 'left' until I had enough energy to sort out a cleaner (He absolutely refused despite the house because a shit hole).

I fully agree about needs that arent being met. But that's another discussion/issue....

Do you get any ongoing support with the ME from a specialist? Your DH sounds a bit like mine with the fibro. He thinks I am 'throwing money' at supplements etc. B12 can be really important. Maybe if the GP tests you for it and follows up, this might help him understand the importance of it.

Sadly some people can be a bit sceptical about conditions such as fibro / ME. I think there can be a bit of denial there also. Maybe it can be due to upbringing also. My Dh is from a 'stiff upper lip' family who don't talk about problems and see any illness as a kind of weakness.

It is really hard dealing with it on your own and I feel for you on that.

@andthentherewere, I totally get what you are talking about. It can be so frustrating not being able to do what you want/use to do.
I've also found my life became smaller and smaller and it has been hard to make it 'bigger' again. But as I said, I am getting there. It's easier now that I don't collapse at 7.00pm from exhaustion.

But with the dcs, that's not that. Yes I woud love to be able to share what they do. They've been skiing with school and came back with many tales and I really wish I could have gone skiing with them. I used to really love skiing too.
I just wish there was some time and space left for me to spend time with them doing things I can actually do. I think people who say that they don't have quality time with their teens actually dont see and appreciate what they have.

The best there is in my area re suport is a 4 sessions 'course' as a group. Then you are on your own/GP support.
Ive been trying to get some counselling from the ME clinic. There is a year waiting list and I am still waiting (I've tried counselling privately and found it unhelpful. It has always ended up being all about DH rather than about me. Or the counsellor has no idea of what it meant to be chronicaly ill)

It is not nice feeling bad about having something and like it is your fault. On top of actually having it. Is that how your DH makes you feel?

I just go on with things like a gym / swimming membership (I get PIP which covers this) he seems to resent this sometimes. Sometimes he even seems to be jealous. It can be a bit odd.

Maybe there is an ME support group in your area

Hang on, your 'D'H, has made you a cheese sandwich or similar for lunch repeatedly for 3 YEARS even though he knows full well gluten and dairy negatively affect your health?! WTF.

He sounds not only supremely selfish and self-absorbed but also unkind. I'm sorry OP. I think the issue is your husband. Your children are probably aware of this but will quite happily escape the house and take the free/subsidised by dad sporting weekends because they love the sport.

Agree with others about getting a TV and a Netflix subscription so you can get stuck into a series with them. Obviously ordering pizza is out but Ocado do a great dairy and gluten free pizza!

I'd also start getting your food shops delivered, as it means less energy used and more energy available for other things.

And in the meantime, figure out if you want to stay in a marriage where you are not valued and almost resented for spending money on things to make you better.

I know a family like this, their hobby is cycling (in a club and regular races) and they are gone with it (dad and kids) 6 am to 2/3 pm Sat and Sun.

However, they do family night one evening at the weekend that includes Mum (obvs) and do things like go bowling, have a takeaway, watch a film, play board games etc. The other day at the weekend they visit his Mum whose now on her own and unwell, and Mum usually tries to have either Friday evening or an hour after inlaw visit for some time with dcs. I know she found the adjustment hard but said recently it was much easier now they have weekly family night and it's treated as not optional! :)

I really feel for you OP
I can feel how sad you are

I think I am lucky, my teens of similar age spend a lot of time with me and I try not to take it for granted, or push in when I am not wanted

I don’t know what to suggest except perhaps what about a cinema pass for the 3 of you? A lot of teens like the cinema and you could go mid week with them and make it a regular thing to see all the new films. Films are one way I bond with my DC, we enjoy going to the cinema and getting into franchises and discussing new films (and watching old ones together)

Amaretto, I think you have borne a lot without support. You do sound a remarkable person. In your current circumstances I think I would go for the tv as an attractor for your boy’s especially if you can spin it as valuable for education and news - and therefore useful for their next steps . And then sneak in a few series you watch together ...

Thank you @copperas.
I am not sure I am remarkable but yes I have tried to do my best wo any support (There is only DH there... Parents are away and I relocated for DH....)

I WILL try the TV even though I am not convinced as such. I was the one who couldnt be bothered with a TV and, when the dcs were little, I had a massive issue with all the adverts everywhere on kid's TV. This was a while ago so no AP, netflix etc... to use instead!
As neither of the dcs have grown with a TV, I am not sure they are as attracted to it than other teens. I know for a fact that if we go somewhere there is a TV (eg hotel, grand parents), they dont actively watch it.
I am hoping that SOME series are going to be attractive enough though. The 30 day free trial with Netflix will tell me about it.

David Attenborough might do the trick!

Gosh yes, Attenborough series, Springwatch, Countryfile, Prof Brian Cox's programmes, sports such as tennis, cycling ... Plus literary adaptations, films, genius comedies. It's not all gurning adverts for sofas and burgers, fortunately.

Btw thanks @MsPepperPotts for your explanation about Netflix and AP!!

Netflix is pretty shit really. But since you’ve never watched anything there’ll definitely be some gems in amongst the utter dross. Agree that nature programmes are fab, as are any to do with science, engineering, general knowledge and factual information on subjects that interest you or them.

For general viewing I find Now TV much better as the choice of films is better, and I especially like having access to classic films.

Apart from Brian Cox's, what else is there on science/engineering, program wise?

It sounds to me like he has deliberately engineered this (and excluded you) so that he has the boys most of the time. I wonder if he would have engineered this so much if you had two girls?

He knows that if he gets grumpy and creates an atmosphere you will let him have his way. You need to stop giving a shit about his moods.

Time to put your foot down OP,

paranoidmum2 makes a good point, @Amaretto I had to bide my time for various reasons before leaving XH. During the time I was still physically present, I made a conscious decision that I was not going to give a single moment's thought or attention to his moods (which had dominated absolutely everything for 20 years). I still knew I was going to leave, but making this decision and following it through was the closest thing to liberation I could have had in that particular situation.

OP there’s an entire series of shortish episodes called ‘What the health?’ Really interesting, about different bodily functions, diets, illnesses etc. Only about 20 mins each so really watchable.