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.

It’s like make plans, do what you want when you can, but accept every day as it is.

Sorry if I’m labouring a point! I’m just thinking out loud.

@PlayBo - and it might help @HÆLTHEPAIN too - have you ever tried ACT (acceptance and commitment therapy)? I was referred to a psychologist attached to my pain clinic, and it really made a difference to how I view life with a limiting chronic illness.

There’s a lot of remarkably unsupportive / unsympathetic replies to you. Reading your posts, it’s so evident how sad, frustrated and stuck you feel.

My main question is whether you’ve tried talking to your husband about how you’re feeling? Obviously doing so in a way that wouldn’t suggest you don’t support him having his activities. But does he know the extent of how sad and left out of life you feel?

I think I might periodically use this as a diary to make myself accountable for “getting a life” myself. To start my change, as I said in a earlier post, I’ve been making a list of things that need doing and what I plan to do to offload them or make them less. In the meantime, I’ve written down what I’ve done today with a view to potentially giving myself a wake up call.

And just to point out, this may not seem a lot for non chronically ill people, but it really is for me. And, as someone else pointed out earlier, when this is ALL you do, it really does become drudgery. Also, laundry in particular, takes it out of me because of the lifting of my arms up to put things on the line and when folding.

Today I’ve: put some towels in to wash, then dryer and have just folded them.

Hand washed the Ninja (air fryer) and some other bits that don’t go in the dishwasher.

Managed a shower - laid down for a bit afterwards to dry.

Made our bed.

Sorted out (folded) the washing I’d brought in from the line last night and put in airing cupboard.

Folded a big flexi bucket full of dryer things (undies, socks, pjs etc)
Carried that upstairs and put it away.

Put bedding in wash and put on line when done.

Put another load of washing (dryer stuff) in.

Hoovered through downstairs - needed it due to work done the other day.

Took a parcel back to the post office.

Still to do: iron some of the clothes - I don’t iron everything but some bits need it.
Bring in and fold up the washing on the line
Hoover upstairs - it needs it from the work done the other day.
Put the rest of the bedding in the wash. (Have to split ours into 2 loads due to it not fitting in all at once).
Potentially think of and cook something for tea for all of us.

Mental tasks - Booked parent’s evening for my son. Organised the plasterer to come and check out some work. Showed him what needed doing when he came round. Contacted plumber re: shower we had replaced recently that seems faulty. (And to remind, even mental tasks can be a significant drain on my energy).

Now, I’m laid on the sofa trying not to fall asleep, exhausted.

@SoundTheSirens I’ve not heard of that but I will definitely check it out. In the meantime I’ve downloaded a book on Audible called ‘How To Be Sick’, which was recommended in an ME group. I’m also going to arrange an initial consultation with a counsellor from Action for ME.. apparently they have experience of it all and it might be more beneficial than someone who hasn’t got the same knowledge.

I’m trying to think of something my husband and I can do tonight that won’t be too much. @Happinessgame I have talked to him numerous times but it doesn’t seem to do anything.

I also plan on contacting the doctor’s again as they have social prescribers who recommend groups and support - not necessarily for ME/CFS but it’s worth a try.

I don’t think I’m off to a bad start!

Good for you. I think a diary where you keep a record is very good idea. Personally I would have had thinking of something for tea in the mental load as it is one of the most tedious chores. Could you maybe teach the kids some basic cooking, good life skills for them, they could then help and they might not take it so for granted.

Suggestions from the coal face-

Baskets of laundry are left at the foot of the stairs. A family member a carry it up and save you vital energy. Everyone in my house knows things at the foot go up, things at the top come down.

Meal plan.
week 1 Work out a week’s meals and do an internet shop for it.
Week 2 Do the same again.

Week 3 and 4- reorder what you bought in week 1/2- you can literally reload the whole basket with one press of the button.

Bed making- we have 2 single duvets, much easier. I fold them at the foot rather than remaking properly. I’m working my way up to two single beds- so much easier.

That is too much OP. Way too much.

Too much bedding when doing other washing. Do them on different days.
Should not have done parcel, or the hoovering. Not when you have added a shower into your day.

You need to split your work a lot better than this. If you are doing several loads of washing and stripping of beds YOU DO NOT DO ANYTHING ELSE THAT IS PHYSICAL! No going out, no hoovering, only shower if you really stink etc.

Your children or husband are quite capable of zipping the hoover through. They are also capable of making their own beds up - you strip them, wash them, they make their own back up. You dust and tidy, they hoover, sweep or mop.
You bring down washing, wash, dry, possibly fold if you have the energy, leave in individual piles and they take up their own and put away.

Lightly wipe down bathroom (10 minutes) every second day, get cleaner to properly clean it every week.

Wipe down kitchen every night after dinner, dh or kids un/load dishwasher and sweep if necessary. Get cleaner to clean properly every week.

Delegate the more physical jobs - it will only take one of them 10 minutes a day, you have 3 of them so they rota two days each minimum.
Get cleaner to focus on bathroom and kitchen, with hoovering and mopping throughout.

That will leave you to do then mental stuff, parcels and something that is enjoyable to you. Light exercise or a hobby, or just a coffee with a friend.

I have some stuff and I address every choice I make based on whether this choice will bring me better well being in the long term or not. Every choice. Thoughts I think, emotions I feel, mental states/mind sets, actions I take. They are the things I can fully control in life and I take my future well being seriously because of the issues I have so things either contribute to that or take from it.

Could you do something like that? You sound like at the moment you are a bit all or nothing, working to the point of exhaustion (all) and then take a forced break (nothing) could you learn to operate at a more consistent less pressured level so you don’t burn out? Your list for today sounds like an awful lot for a person with a chronic condition.

That’s a really good way of framing things and something I’ve never really thought of before, so thank you. I will try and implement this approach in future. You’re right about the all or nothing thing. Most of my days are similar though. I probably average about 10 loads of washing a week. The bedding and towels are 3 loads and then normal clothes and whites make up about 7. Then add what I call the ‘pottering’ things like general tidying and bed making, as well as hand washing dishes etc and it all adds up.

The week the cleaners come there are 2 extra loads of washing because they strip and remake all the beds for me so I just wash the bedding. The week in between we just do ours (and leave the kids’) and I strip it and my husband remakes it. I also give the bathroom a thorough once over on the weeks in between!! I’ve got to take my daughter for a doctor’s appt on Tuesday morning, my son the hairdresser’s on the afternoon. We’ve just done the opticians which is two visits, then dentist as well. Then the plumber is coming on Tuesday night to see the shower. My point being, although these appointments etc are sort of one offs, there always seems to be something.

I went to my parents’ for a few hours one day last week to see them and my adorable niece and nephew and that meant I couldn’t do anything else that day so I played catch up with washing etc the days after.

Sorry, went off rambling there!😂

"Today I’ve: put some towels in to wash, then dryer and have just folded them.

Hand washed the Ninja (air fryer) and some other bits that don’t go in the dishwasher.

Managed a shower - laid down for a bit afterwards to dry.

Made our bed.

Sorted out (folded) the washing I’d brought in from the line last night and put in airing cupboard.

Folded a big flexi bucket full of dryer things (undies, socks, pjs etc)
Carried that upstairs and put it away.

Put bedding in wash and put on line when done.

Put another load of washing (dryer stuff) in.

Hoovered through downstairs - needed it due to work done the other day.

Took a parcel back to the post office."

This is so much! I couldn't do half of this. Then I be so exhausted I'd be in bed for a day or 2.

Towels- just do as hoc as required.

I only have a bath one a week (don't have the energy/strength/flexibility for showers).

Beds only every 2 weeks.

Moved from a house to a flat. Stairs are a hazard and take a lot of energy.

I haven't hung clothes on a washing line for 20 years!

Get a robot hoover!

OP

Do you have a friend at all who you can do something with who would be willing to support you?
I am not at all belittling how you are feeling or affected. I have fibromyalgia (although in denial about this) and currently I am sat on a stool next to the washing machine waiting for it to finish because I've just unpacked the summer duvet and with the help of my son been in the attic. He does all the heavier duty things and I am knackered.

I think you need to delegate. Also I really think some things you have to let go so that you can have a life. A lot of this sounds like depression (naturally) on top of everything else. But cleaning the toilet daily. I'm sorry, fuck it. Or make one of the teens do it. You really have to learn to say fuck it. Or you will be in this drudgery forever.

Also if you can get out and do some things for you it will definitely have a positive effect. Even if you have to rest in between. Even if you walk to the end of your street and back.

I actually run. I find it really really really hard. I feel like shite most days. My house is not a show home because something has to give.

My rheumatologist told me that I although I would pay for the exercise (and I do) I would also benefit. And still the benefits outweigh the negative. I'll be honest, it doesn't always feel that way and the other day I tried to run and I just really couldn't do a basic run. I was stood in the lane, feeling like death and sobbing and sobbing. Then I had a very slow walk to catch up with my friend. I am not fast by the way. I was rather overweight and have lost almost 5 stone which also helped me and I could probably lose more still. Although find this very difficult.

But if you had someone you could go with perhaps? A friend to do anything with. You only ever mention your husband. I think right now you need to concentrate on trying your hardest to find solutions that help you feel better. Cleaning the toilet and constant drudgery is clearly not helpful to you. It is exactly what you describe it as. Drudgery. And then it becomes hurdles in the way that you can't get over. Remember...what you think about expands. Not saying it's easy AT ALL, but it is still true.

As I say, I have some understanding and am saying all this in a kind manner. But as sad as it may be, you aren't seemingly getting anywhere with DH, so focus on you. Make those kids do things too. And also...fuck it! Say fuck it a lot more! Fine the poem 'dust if you must' and also get the cleaners.in every week of you can afford it. I just say fuck it 😂

I agree. My health is not great and I work part time in a draining job. I have 3 teens 15-18. They:

• do all their own laundry (1 load each per week, one takes darks, one whites etc).

• cleaning bathrooms (divided between 2 of them)

• cleaning their own rooms

• hoovering

DH works full time. He does some hoovering, all the washing up, putting bins out, finances (ie. All insurances, far stuff, mortgages etc). He also runs once a week (wkend), football once and swimming once (wkend). He also has been on two lads weekends this spring/ summer!

I do all shopping, cooking, rest of laundry (mine and dh's), folding and sorting laundry. We don't have a cleaner.

I think your dh could do a bit more admin or one more job and you could get yourself out somewhere, even if it's once a fortnight.

Now I realise this may not be the answer but something to consider...

It sounds like a lot of your energy is taken up with washing.

Instead of the cleaner, or additionally if you can afford it - could you use one of those services that collects, washes and returns washing? That would save you a lot of energy. Also, make sure the kids are responsible for making their own beds, and putting their own clean clothes away.

For food - get a weakly online shop that has regular items added to the basket. Some weeks you could alter it if you wanted to eat something different, but you could save time and energy by having some staple meals/ingredients delivered each week. And get the teens to help put the shopping away.

I think with those main tasks managed, you might have a bit more energy to do some housework, but also some activities you enjoy.

Also agree rota for teens doing hoovering, that's what we did growing up.

Thanks again everyone. Just to say, I am taking on and looking into all the suggestions so even if I don’t mention specifics, I have taken them on board and I am grateful for them.

Today’s been a better day, though I’ve still done some ‘pottering’ and my husband has done nothing. Actually, he made our bed (I don’t mean put bedding on, just straightened it up) but I did the dishwasher because he’d done that. I ironed the stuff from yesterday, put the rest of the bedding in the wash, squirted some stuff down the loo, wiped and tidied the kitchen (put trays away etc) and hand washed a couple of bits. Upstairs still needs hoovering.

We’ve been for a run out to a new place and found a cafe so that was nice.

I’ve been looking at the robot hoovers as suggested - that may be a good shout and the laundry thing is something else I’m going to look into. I used to have someone do my ironing but then stopped when I decided we could get away with not ironing much. Mostly it’s school uniform and t shirts that come out creased. I have used a launderette in the winter when my washer froze (it’s in the garage) and that was quite expensive so I think getting the teens on board is a better idea.

Grocery shopping is another thing I absolutely hate with a passion. I have a delivery pass for Sainsbury’s but trying to think of what to order stresses the daylights out of me so I think the suggestion of a weekly rota is the way forward.

I only really have 2 people that I would call friends that would do stuff but they have their own stuff going on too. My friend whose husband worked away has activities with the kids most nights and works during the day. To be honest, it was always me who went to hers in previous times because she couldn’t really get out with the kids - and I really enjoyed it, but it saddens me that she doesn’t seem to want to come here (I’ve asked) when it would be a boost to me. And the other friend works and lives a bit away - not massively far but enough for it to be a chew on and not ‘easy’. A lot of friends and acquaintances sort of fell by the wayside when I left work. I’m on a FB messenger group with some old school friends that was great in lockdown and we periodically message in there now but I’ve not really seen them for years. It makes me sound like Billy no mates and I suppose I am. This, along with my lack of ‘ability to contribute’ massively affects my self esteem.

We’ve got my SIL and friend (we all used to go clubbing together in the early days) coming round for a takeaway tonight so I’m looking forward to that. We sometimes go out for a meal but now and then they come here because I can’t always make the meals and this way I get their company but in the comfort of my own home.

Have you considered HRT for the peri symptoms including anxiety? And are you getting any help with your mental health? And yes, you are choosing to do far too much housework!

I have - I’ve actually got HRT in the cupboard but, due to my BP phobia, I’ve not been able to get consistent, proper readings. When my HRT was issued, my BP was slightly high (but I was panicking) and that wouldn’t have stopped me using it but they requested more readings to get an average before they would reissue the HRT - and I haven’t been able to get the readings so I didn’t want to start using it in case I had to stop again.

I had a lovely night last night with DH, my SIL and our friend. We had a good a catch up and some food and listened to some of our old clubbing days tunes.

I’m just sat looking into laundry services.

Look into psychotherapy for your blood pressure check phobia.

Do you have generalised health anxiety? Is that linked to germ phobia/ excess cleaning?

Meditation/yoga/pilates and regular massages will likely be very beneficial to you.

I have had therapy (3 different therapists in the last 3 years) and hypnotherapy for the BP phobia. The hypnotherapy worked in that it actually got me there to have it taken which is an absolute miracle in itself, but I couldn’t stop the panic the other day - though it was probably made worse by the fact the machine got an error the first time. I know it might seem I’m making excuses but honestly, I know how irrational it all is and I’ve done everything I can think of to try and help myself. I hate being like this. Once upon a time, that sort of thing never bothered me at all. Now I get nervous at the dentist, just going to the doctor’s for anything and other medical stuff. This is definitely an effect of peri, I believe.

I’ve had OCD for nigh on 30 years and I don’t have a fear of germs - my ‘themes’ were a lot different over the years but I do think that led to me feeling like I was a horrible person and my subsequent need to have everything just so was probably borne out of all of that - like making up for the horrible intrusive thoughts. That is obviously compounded by my illnesses nowadays because now I feel useless.

Although I had OCD, I never really had GAD until after my youngest was born and it became more health anxiety. It was horrid. That seems to have eased somewhat (I’ve been on Citalopram since then) but when I got diagnosed with the ME and Fibro, the health anxiety ramped up again after a while. It’s probably now more focused on heart health and I’m scared because I can’t exercise etc. Most people with a high BP or diabetes diagnosis, for example, can change their lifestyle and get more active (my DH being the exact example) but I haven’t got that option and it scares me silly.

It’s all sort of a cycle that I don’t know how to stop, despite trying what I can think of. I can’t have massages either (boooo) because they leave me feeling worse. I had one at a spa day and had to get my sister to drive me home and put me to bed!😂 That said, maybe just arm and leg massages might help because I’ve enjoyed those when I’ve had manicures and pedicures in the past (don’t anymore).

There is an online thing I’ve seen that looks good for meditation etc so that’s also on my list to check out. (I have to do things one at a time otherwise I get overwhelmed with information and that doesn’t help).

Have you explored other neurodiversity and trauma?

I don't think you can separate your physical and mental health into boxes.

For a start the citalopram causes fatigue.

Maybe detox your body and see what that does physically.

Do you have the funds for a residential rehab for the OCD/health anxiety?

I haven’t explored neurodiversity and I don’t think I have any trauma, barring a scary time during my youngest son’s birth, although it wasn’t actually as serious as it felt to me. I lost some blood (not enough for surgery, just needed some meds) but as I say, it was awful to me - I was convinced I was going to bleed to death. I think that was what led to the health anxiety that followed.

It’s funny you should say that about the citalopram but I’m convinced it caused my TMJ disorder. I’ve also often had thoughts where I wonder if it’s a coincidence that my ME symptoms started around the same time as me starting Citalopram. I’ve previously tried to reduce it and did get it down to a smaller dose for a while but then my anxiety ramped up again (possibly peri related) and so I incresed the dose again.

I didn’t even know anxiety residential rehabs were a thing so not sure whether I could afford one!

Just an update for my ‘diary’. So, the weekend and past few days are catching up with me and I’m confined to the sofa because I feel ill. I was going to stay in bed but somehow I feel mentally better if I get to the sofa, though I may pop up for a snooze later.

There are 3 loads of washing waiting to be put in and I haven’t yet broached the subject with everyone else. Mostly because I need to get my head round it - I had been looking at laundry services but I’d still need to take it and pick it up…and I need to have the mental energy to confront the situation with DH and the kids because it will be met with resistance.

I was talking to DH last night about my BP thing, just explaining the doc’s appointment and he was suggesting unhelpful things, which I don’t blame him for because he doesn’t really understand so he probably thinks he’s helping. That said, he literally just freezes at times when we talk about anything to do with my health and it has the effect of me feeling unsupported. In fairness, I’ve probably talked about it ‘too much’ but I also think that I do talk about it too much because I don’t feel supported and like I’m trying desperately to make him ‘get it’.

I remember when his dad died and I supported him, holding him close and telling him I’ve got him and I’ll do whatever I can to help him get through it and I did things to back that up. I suppose I would really like something similar in return (and I know chronic illness isn’t the same as losing a parent) - that reassurance that he’s got my back and we’ll get through it together but he doesn’t give it. I would say he was more supportive when we were younger so maybe he’s just tired of it all now.

Separate it all out. It may help you untangle what you feel.

He can help with household organisation.
He can help you feel loved.
He can’t help with the anxiety and related conditions.
He can help with chores.

He doesn’t want to feel like your carer- and that’s a blow to most romantic relationships anyway.

You are the only person who can manage your conditions.
The best use of your limited energy is on things that help you feel better- health stuff- and systems that reduce your load.

Get the DC together, show them how to use the machine. Show them that their white things need to be done separately.
Give them their own laundry basket. Leave them to it.

Ultimately he can’t help you feel better. Save your energy on rekindling love between you- work on relationship and feeling. Ignore chores. You want to feel loved and supported. Don’t equate that with him doing more chores.

Thank you. I know he can’t help me with certain things, which is why I’ve instigated therapy, which is also ongoing. As I said though, I’m not sure it’s done me any good, although maybe I’d be worse without having had it so I’ll think of it as a positive.

Luckily at the minute he doesn’t need to be a carer to me but I’m acutely aware of the potential for me deteriorating to the point I do need a carer and I think by getting on top of this whole situation so that I’m not overdoing and can have some independence is essential. On that note - I messaged my friend earlier with a view to catching up, so if I’m recovered enough I might be popping out for a bite to eat with her next week.

I’m a bit wiped out today so I think tomorrow will be the day I’ll tackle the laundry with the kids and DH. I haven’t missed the irony of the fact that today is probably when I need the help.😂