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.

He didn’t want to do it then. He only started wanting to do it when OP couldn’t. I think that’s insensitive, of all the hobbies he decided to take up.

We could have done it when the kids were younger to be fair. He just didn’t want to then and said ‘it’s not his sort of thing’ and so I didn’t push it. It was more the combination of the kids being younger and that he didn’t want to, it sort of just got put on the back burner. In fact the kids could have joined us in some circumstances but it was a no go.

I absolutely don’t think he shouldn’t go - but I do feel like it’s a kick in the teeth and it does sting every time he does so I have to deal with that and it feels shit. It is what it is but it doesn’t mean it doesn’t hurt.

And how do you know this?!

OP’s words?
“We could have done it when the kids were younger to be fair. He just didn’t want to then and said ‘it’s not his sort of thing’ and so I didn’t push it. “

So if true, never allowed to change his mind?

It IS true. I’ve no reason to lie. And of course he’s allowed to change his mind - he has changed his mind obviously. Doesn’t mean it’s not shit though.

Oh I really feel for you with lots of these replies from people who have no idea of how hard it can be having constant pain and no energy. I have ME too so I can relate. Feeling like I need to do as much as I can even when I'm so exhausted I can barely move by the end of the day. It not fun, I am definitely not the fun parent and I do resent that a bit as I've got no energy left for fun after dealing with so much else.
Having said that, my dh does do a lot more household chores than yours. Why does he do so little? I do think you need to have an honest chat about what more he and the kids can take on so that you have a bit of time, energy and headspace to do something for you. It's hard because you can't just add something extra in to your life, you do need him to do more because otherwise there's no capacity. That's what most posters just don't get.
It's either that or you just go on strike and stop doing lots of stuff and wait until anyone notices.
The idea of trying to get to find something for you in the morning does sound like a good idea though if you can manage it. Plan to use your spoons on something you enjoy at least once a week to start with and then if you have nothing left after that, others will have to pick up the slack.

I also have ME. It’s hard for people to understand how a few chores that they could do maybe easily in a couple of hours takes our energy for the whole day. And there’s little to nothing left over for our personal enjoyable or relaxing activities. I haven’t resolved it yet myself. But I have really been trying to address this recently. As for your husband I don’t know what to suggest; I think he could be a bit more supportive of your wish to do other things sometimes.

You should be valued by your family because you’re their mum and wife, not because you scrub the loos every day. And they should have empathy for you because you have a really difficult condition they can see you living with

^ I agree with this post by @OriginalUsername2.

PS. You sound lovely and so clear OP. I know how easy it is for justeveryday coping with chores can just feel the most we can achieve. I really hope you find a way for things to get better.

PS. Have you heard of LDN (low dose naltrexone) OP? It’s not a cure, but some people find it helpful for conditions like ME, MS, fibromyalgia and other immune illnesses and conditions with pain. So far it’s helped reduce my pain, if not my fatigue. And my sleep is a bit better too. There’s a Facebook group too. Feel free to PM me.

I've never heard of the above so googled it (I'm desperate for medication that helps). At first it said it wasn't licenced in the UK but it did bring up the ME webpage. On that they have provided a link for your GP to read so it might be worth a go. If you do i would really appreciate you sending me a PM to let me know if it works please.

https://www.actionforme.org.uk/get-support-now/info-and-support-resources/interaction-magazine/low-dose-naltrexone/

PPs have given so many helpful suggestions to step back from chores. (I was boggled that you clean the loo daily!). And getting a cleaner in weekly and getting the teens to do more.

I think you’ve got a few issues here. You are resentful that your DH has energy and you don’t, which tbh he probably realises. You also want him to do activities with you to reconnect but maybe resentment is getting in the way of that? Is there a way to write a letter and ask him to do something specific like the spa day, and make it really clear it’s for your relationship?

My partner has fibro and it’s just really tough for everyone. He suffers the most but I’ve had a lot of changing to do as well. It’s toughest mentally to have fibro of course but there’s an effect on partners too that living with someone in pain and distress daily brings. Honestly fibro just sucks, it’s the shittiest thing. It sounds like increasing communication could be helpful, would you consider relationship counselling?

"Yeah. The drudgery is the standard household stuff like cleaning the loo daily, wiping the bathroom round, wiping the kitchen, making the bed, laundry, budgeting, cooking (yes, just evening meals), organising the grocery shopping - the mental energy of remembering when everything runs out or is needed. There can be quite a bit of laundry, especially when the cleaners have been because they strip the beds. And when he comes back from his hobbies. I also do the not so regular more deep clean stuff like doing the oven or cleaning the hair from the shower plug - soul destroying that that’s what my life has become! I know not all of these things are done every day of course.

I’m also the one who does dentist, docs, opticians, hair appointments etc. I order their clothes and often have to go out to return them. Again, I know these things aren’t every day or even weekly but even something like just taking a return to the post office is using my energy overdraft. I also take the kids here and there when needed. Occasionally I take his mum to appointments and wait in the car (I don’t mind, I love his mum). And again, I know these things aren’t daily but even one of those things a week on top of the stuff I do every day can have a significant knock on effect. And what it all boils down to is that by doing these things, that may not seem much to other, non ill people, is that by doing these things, I literally have nothing left for me."

I have chronic ill health too. From that pov you need to cut back/lower standards/make life easier for yourself on most of this.

The loo doesn't need cleaned daily. Wipe around can be weekly. Ask the cleaners not to stop the beds if it's making too much work for you. Teens can strip,wash & remake their own beds. DP can do yours.

Grocery shopping can be online with a set list on repeat buy. Have a whiteboard in the kitchen for anyone to mark what's running low/run out.

When you are comfortably off don't stress so much about budgeting, can't you just go round the supermarket chucking stuff in? Or can put it on dp to get top up shops on his way home from activities.

Can't dp take the DCs out supermarket shopping once a week/month?

Oven cleaning- get professionals in every 6 months/a year.

How many appointments do you all really have?

Dp & teens can sort their own hair.
DP can do his own dentist/optician.

No clothes ordering. I don't do this as like you I do t have the energy for returns. Send teens to shops themselves/with dp with cash. I wouldn't waste my time buying anything they've not tried on first.

Have a joint diary/calendar and when there's something like driving Gran/kids somewhere score out the rest of your day/the next day to show visually the recovery rest you need. Eg if you've done a lot of driving it's a ready meal/ take out that night.

Manage their expectations & prioritise your leisure/fun time.

@HÆLTHEPAIN Apologies if this is irrelevant to you OP but have you ever been assessed for POTS? I've had chronic fatigue for a very long time, since I was a child and it had gradually got worse until I was signed off sick long term and virtually housebound. To cut a long story short I actually have POTS. The main symptom of POTS is severe fatigue and my cardiologist believes that a large number of CFS/ME cases are actually POTS. It's not curable but it is treatable and I am now slowly recovering. It's a long slow journey but for the first time in years I'm hopeful for the future rather than on a slow but steady decline and feeling terrified about how much worse it could get.

Other than that, I would echo what others have said about lowering your standards. I'm very sorry though that your DH isn't more supportive. My DH does virtually everything around the house while working full time and has never once complained about it. He's my biggest support, and supporter, and I hope you can eventually get your DH to show more understanding and support for you.

Last, I just want to say how sad, and depressing, it is to see how little understood energy-limiting conditions are even now. I'm surrounded by mostly supportive people but I know they don't really get it and some of the comments here make me realise how some people no doubt view me and my illness.

Hi Pizie. You can get LDN in the UK. I get LDN prescribed through a pharmacists Dicksons in Glasgow. It’s a fairly cheap drug £30 per month because its an old (unlicensed) but well established safe drug now. Some GPs will prescribe it but many are not familiar with it. It is not a cure but seems to be a helpful safe drug for quite a number of people with auto immune conditions like ME/CFS, long covid, MS, hashimoto’s and others. For people like me it seems to have helped with the pain side, I have noticed a difference after about 4 months. Most people get very few side effects or they wear off quickly which is a real plus. I have worked my way up to 3 mg.

I found your “masking” comment very pertinent too. I find the masking can sometimes make you feel like you’re living in a parallel, unreal universe at times, and it can be a bit lonely there too.

A long sit-down “come to Jesus” talk with your DH might be in order OP? It sounds like he hasn’t really faced up to your health condition. Is he sad, angry, ashamed, trying to pretend it doesn’t exist, or just doesn’t care that much?

Although you’ve had the usual lack of understanding in this thread I think you have had some great, supportive posts. Plus it’s also so nice to see that some people are so supportive and helpful in real life eg the previous posters husband who helps her so much. (Though not my experience I must say with people in my life eg. I actually had a friend who angrily said to me when I had to shorten a walk “we’re all tired!”) ).

The thread has also made me consider more what things I can find satisfying and bring me joy or satisfaction even in simple things. Sitting enjoying a cup of coffee, being outside on a warm balmy day, a short story, a short holiday and to try and focus more on those things I can manage to do or enjoy. Also giving yourself full credit for the other things you do manage - eg. raising teenagers, managing a home - which is no mean feat even for the fit and well.

Thanks so much for the last few supportive comments. They’re much appreciated.

I have read them but have had a shit morning so apologies if I miss something. My shit morning was that I’ve been to have my blood pressure checked as I have a phobia of it. I’ve been working on calming down but today was the worst reading yet and I had a panic attack, which obviously didn’t help. I can’t take it at home as I’m worse here.

I have heard of LDN but not too much though what I have read was mixed so I’ll give it another check out.

I’ve also taken my daughter for an appt this morning so I’m knackered now. I am anxiously waiting for a call from the doctor so I’ve plonked myself in the garden with a cuppa. It’s quite warm but not too much so I’m enjoying it.

I’ve got to put a load of washing on the line but that will have to wait.

As for my husband, and in order to be fair to him, he is loving and affectionate and still seems to be attracted to me (as in he tells me and initiates sex). So in that respect, I can’t complain. In regard to my illness, I think it’s a case of not really getting it and sort of a bit in denial maybe. He’s never been the one to talk things through and “just wants an easy life” - don’t we all!

I’ve been thinking about all the people who say what I do is not much and I’ve been trying to think of a way to explain it. The best I can come up with is - let’s say hanging out a load of washing takes a ‘normal’ person 10 mins and a teeny bit of energy - it takes me about 25 mins and probably a good 25/30% of my available energy (as well as causing me pain in my arms and shoulders). But that energy I have might not be much at all, so it’s like 25/30% of a half/quarter/third (whatever it might be that day) charged battery. Some days I might have a bit more to use. So when you add up seemingly small tasks for a healthy person, it’s often the equivalent energy expenditure of a full time job for me.

My self esteem is massively suffering too because of my lack of being able to ‘have a life’ and contribute financially into the house. I’ve had three different therapists over the last 3 years (paid for privately). In fairness, the first and second were more to try and deal with new anxiety (which in hindsight is probably peri related), but the latest has been more talking therapy and, as much as it’s been good to have someone to talk to about how these things affect me, my self esteem is still through the floor. I’ve not been passive, I’ve tried everything I can think of to overcome these things.

I lost a lot of friends/acquaintences when I got more ill and left work so now I’m pretty much down to two. I am close to my family but they don’t really get it either.

@HÆLTHEPAIN I don’t think this has anything to do with your husband but I very much do understand it and I can relate. My DH is a real work horse both at work and he will do stuff at home too but when the kids were younger I was still always overwhelmed. Admittedly I work full time too and I always have but outside of that there was too much to be done and I felt as you do like I was just the facilitator of everyone else’s lives. DH had loads of hobbies and mine was just socialising with friends which did not fulfil me.

So I dropped a few ropes when I needed to, I took up hobbies of my own, I made plans and I got a life. We have made it work for us, for the kids but it is far from perfect. The house can be messy sometimes, we can eat take away sometimes and the standard of good drops, we don’t let the kids do every hobby they dream up, we focus on a few and we accept mediocrity in our home life. The focus is on our good relationships not a perfect life. Honestly it had changed everything for me.

I see it now with a family member who is easily overwhelmed and doesn’t have a family so it isn’t that, fixing this stuff is an inside job and it is often not just the external circumstances like family and life pressure. You need to learn how to make your life a happy one.

Op

I can feel how sad you are at being unwell and of course you're jealous of your husband who still has his health off doing all the hobbies etc that you hoped you would do together . I think the housework etc is a bit of a Trojan horse for you, it's far more that you're sad , justifiably a bit resentful and just would like a bit of tlc. I totally understand that. The challenge is though even the most loving family get compassion fatigue and real life takes over again and family and friends start going about their business again while you can't.
As everyone said , it's unlikely that you're famiiy will ever really want to spend their time 'going for a drive' etc even if it means spending time with you so you are going to have to find things in your life that bring you joy as you are now today . Join a book club or a choir or perhaps a sewing club etc. ultimately you sound lonely above all else. Prioritise yourself and find 'fun' things to do even if they're not active things. A consequence will be that you'll be more fun to be around for your family as eell.
Good luck op. It's so hard being chronically ill but we only get one life . Don't waste iit.

To be fair, we’ve always gone for a drive and cuppa since the kids were little (we used to take them to the park first when they were small) and they go without me if I’m not up to it. They all enjoy it. But you’re right about the rest. I’m definitely trying to work out how to carve things out for me. It’s slow going but I’ve made a start by getting my head round the house stuff - as in what needs doing, how often, what extra I can give to the cleaners, what I can let go of and what I can delegate to the kids. I know this may seem like I’m making more work but I also have OCD, and, while it’s not directly related to cleanliness/germs etc, I think it fuels my need for things being ‘just right’ and how hard I find it to let go.

I broke down at the doctor’s this morning. Like actually sobbed to the nurse. She made it worse by being lovely!🥰 She even gave me a massive hug and it felt so nice. I had a panic attack having my BP taken and it was high and I as have a massive phobia of it, this tipped me over the edge. Because of my health issues, I constantly worry I’m going to keel over, have a heart attack etc. The nurse was amazing and was asking me about how my life was affecting etc and when she hugged me it was like I felt taken care of and like it would be ok - even though she hadn’t actually done anything specific. I don’t really get that feeling of being cared for with anyone else. I mean, my husband is caring and affectionate but not in a “it’ll be ok” way.

Just another thought after your last update, would it be worth spending the money you'd suggested for the health club on some sort of alternative therapy? Not so much for any health benefit but to make you feel cared for and that you were doing something for yourself - like a regular massage or reflexology or something.

Years ago when my DC were very little, I had a very trivial health problem but one that was really getting me down. For a while I had regular acupuncture for it. I don't really believe in alternative medicine but the practitioner was so lovely and I felt taken care of and she was taking my problem seriously.

Huge sympathy OP. People who don’t live with that kind of debilitating chronic illness rarely get it. I have days when just holding my arms up in the shower for the length of time it takes to wash my hair is utterly exhausting and I have to lie on the bed to recover. I truly understand why you feel pushed to make what you think of as a meaningful “contribution” by doing a certain amount of housework etc, but the only way you can prioritise having some energy for some fun stuff for yourself is by lowering your standards around the home.

I am just perusing my own thoughts here OP, as your open thoughts have made me reflect.

I think with chronic conditions one has to try to accept one’s life is going to be different than a healthier person. I think it’s actually quite hard to accept this! Both for oneself and in relation to others. One’s life is simply not going to look or be the same, it never will, though in different ways we may desperately want it to be and may even pretend and refuse to accept our condition.

Also people often measure their lives and present their lives to others in terms of some of their achievements - understandable of course. But difficult for someone whose life is more limited but whose limitations are invisible. We might have to find different ways to accept and value ourselves and also to see ourselves as worthy and of value as who we are, not just what we ‘do’.

I have recently also been thinking through practical steps to lessen energy I spend on cleaning etc so I can live my life doing other things as well. In your case delegation sounds a great step.

Good luck with everything 💐

Thank you. What you say makes complete sense and acceptance is something I’ve been trying to get the hang of for years! It just doesn’t seem to happen - no matter what I do. I liken it to this scenario - when my loved one passed away, I had a brief moment on waking up where nothing was painful and nothing hurt emotionally, then a few moments later the realisation hits you. I have a similar feeling when my husband says he’s off to his hobby that I wanted to do - my head automatically thinks “you can do that” in a hopeful way, and then it catches up with itself and I’m back to being metophorically punched in the gut again. And no matter what I do to try and accept it, I can’t stop that automatic reaction. I hope that makes sense!

@MrsDeaconClaybourne that sounds like a good idea. I’ll have a think about what I might like and see what’s local.

Yes I go through different phases OP, sometimes within one day, sometimes longer cycles. Sometimes I accept my illness, other times I might even be able to look for silver linings. Other times I just can't, I just sort of refuse to accept it. I deny it to myself and maybe to others too and may even sort of pretend to be ‘normal’. Relying on benefits doesn’t help as I can have a sense of needing to justify myself, especially with an illness that people often don’t ’believe’. It can be quite weird psychologically. I really must try and find a way to move through/on from this, I guess what they call the whole ‘acceptance’ thing.