Poorly wife. Husband not coping.

[Gingerfishpogo]

This is going to sound rotten. And it's long.

My wife was diagnosed last year with "mild" Bronchiectasis a lung condition for which there is no cure.

She is always short of breath always tired and wiped out.

She used to be so fit. Used to do triathlons, swim 1000's of metres and run for 6 miles. She did ride London twice. Now she is always short of breath and always ill. If she gets a normal mild cold it really puts her back and has a far more dramatic impact on her than a non sufferer.

I try to support her as much as i can. I take the kids out whenever I can (2 girls aged 5 and 6) and my shifts allow. We are both shift workers and I work 7 out of 10 weekends which puts pressure on her when i am not around.

I am on a flexi pattern but have to work 90% of my shift with my team and i am dead on 90% so there isn't anymore wriggle room.

I take the kids out to clubs in the evenings as much as i can and do all the house work, maintenance and just try to take as much pressure off her as i can and I don't mind doing it (the only thing I struggle with is cooking but i can do a mean fish fingers chips and beans).

The rotten part is I can't help but blame her. Two to three years ago she started complaining of repeated chest infections and fatigue. I badgered her and badgered her to go to a gp but she wouldn't. Eventually she did go but played it down so they just said it was a virus. It all got worse. Eventually it took me, my mother and her mother two years of constant badgering to finally get her to go and get proper treatment. I can't help but feel she could have got some help back then and it wouldn't be as bad now.

All I ever hear from her is how tired she is. I try to help her but she says there is nothing I can do. I feel totally left out and forgotten about. I get that she has this incurable lung condition but it is also a very mild case. Some people end up with oxygen every night and rrally struggling and she is not like that at all.

I feel i am not married to a women anymore and am married to a chest infection.

I just want to scream at her "I EXIST. I MATTER I AM YOUR HUSBAND NOT SOME BLOKE WHO LIVES ON YOUR HOUSE AND HELPS OUT WITH ODD JOBS AND FERRYING CHILDREN ABOUT".

I know I am being selfish. I am no angel and could be a better husband but in the same way I don't know what else I could do to support her.

Just venting I guess.
Anyone have any tips?

Caring is hard. My husband is in remission from cancer. When he was ill and going through chemo I found it very hard that everything we used to share was now on my shoulders. I felt selfish for thinking it and guilty but I just didn't cope well. I wasn't an amazon or wonder woman. I was overwhelmed and hated it. Modern life is difficult we are very busy and pulled in lots of directions as it is. When something goes wrong it doesn't take much for it all to unravel.
I do feel for you, your world has been ripped upside down and you must be tired too. You need to talk, she needs to see the pressure on you too. it's letting go of the past and accepting the reality of now and seeing what you an both do together for your girls.

I hope you get some support here OP. Being a carer is one of the hardest things you can ever do, and it can really take it's toll on you, mentally, emotionally and physically. Do you have any other family or friends that may be able to support her and the kids sometimes whilst you get a break?

It's really not a pleasant condition and as far as I am aware seeking treatment earlier wouldn't have stopped it. Does she do autogenic drainage/breathing? It really keeps things steady so long as infections aren't in play, the more it's done correctly, the less infections can get lodged. She will feel incredibly tired and I'm sure you do too so you need to try to make time and please try to remember that she is your wife, not just an illness (not that I'm suggesting that's what you think - it's just very easy to get in to that way of thinking)

She is still working though and still looking after the kids. Its not as if she is lying in bed unable to do anything.

You sound like you are currently trying to suppress all your anger and feelings about this and I echo those saying to talk to people, your wife included.

It doesn’t have to involve blame or anger for you to say that you are struggling with the amount you are doing at the moment, and try and brainstorm some solutions. Can you shop online, or get your DC involved with housework, or get one of your DMs to help with the ironing, or something like that. Make sure you’re approaching it from a “I’m struggling and would like some help coming up with ideas” not “you don’t do xyz and I can’t either”. And be prepared to reassure her because she might be defensive about having the conversation in the first place, particularly if she feels quietly unhappy and guilty that she can’t do more at the moment.

And hopefully if you can do this and feel that your life is a bit easier as a result, then that may help you let go of some of your (understandable) resentment and anger.

It will depend how many infections she is getting though in terms of energy.

Seconding - I know people with the same disease and the prognosis is perfectly normal life, bar daily chest exercises. How often does she see the doc? Has GP said she has the disease exceptionally badly? What treatment does she take daily, if so?

Could DW be ailing elsewhere? Sounds like symptoms of depression, not lung disease.

I also have bronchiectasis.

It is possible to have periods with good energy levels. What has been important for me is

• to recognise infections at an early stage. My consultant has recommended that I keep antibiotics in the house appropriate to the sort of infections I get. If I start to get a productive cough, especially if I feel ill, I send off a sputum sample, ideally more than one, and then start a course of antibiotics. If the sputum shows that different antibiotics are needed than I get switched at an early stage.

• physio. I have exercises to get excess mucus up off my chest, and do them regularly. When I am well, mind you, I don't have a cough. The value of this is to get any bugs in the mucus out of the body and also to get rid of mucus where infection can become a problem.

• it is a good idea to get a referral to a physio who can advise re exercises and also whether basic equipment is needed to help with them

• vaccinations, very important for flu (every year and look for the one that covers a lot of strains, your GP should offer this for broncheictasis) and also pneumococcus (a one off)

-exercise is recommended, 30mins 5 times a week. This helps get mucus up. Also upper body strength is good for all the coughing! The advice however is not to exhaust yourself as this can leave you open to infection (would apply more to people not used to exercise). I was advised to consider walking and am slowly increasing the amount I do.

• I was also advised to expect increased fatigue for 1 year after an episode of sepsis (documented bacterial infection). I have good energy levels in between episodes of illness.

• When I experienced being increasingly "wiped out" a couple of years ago this was a sign of a new infection that eventually showed on sputum tests. If you wife has been extremely tired in recent months, and she is normally very fit and her bronchiectasis is mild, then it could be that there is some infection that hasn't been picked up. She could ask her GP for advice and ask about referral to a specialist if she hasn't had this.

I hope some of this helps, of course people are different in their experience of illness.

I've worked as a respite carer and seen the relentless toll that being a carer takes on carers. Neither of you asked for this illness to come along and turn your lives upside down, but equally it doesn't have to be something that takes your life over. Diet, exercise, looking after your general health can all help massively, and I wonder if working shifts is doing her immune system any favours too...
I'd sit your DW down at a quiet moment, and say honestly that you're struggling just as much as she no doubt is - and can you think of some ideas together that will help you all. As others have said - a cleaner/gardener, online shopping, dropping unnecessary stress. And I'd certainly go to your GP and see if you can get some support too.

Sorry to hear this is happening to you both.

I sympathise as my DH has managed to have three bouts of chest infections in the 5 years since we've had our DD (whooping cough then two lots of pneumonia). I know what you mean about feeling you're married to the illness, not the person. DH has got better as time as gone on and this time round he actually went to the Dr, got antibiotics and rested before becoming seriously ill.

It's not uncommon for people not to acknowledge they're ill.

I don't really have any advice or suggestions, other than to try to figure out one thing you can improve at a time. The weekends jump out to me as a problem area. Could you have a think about what you could do to help there: maybe there is a local student you could ask to come round in the afternoons and tire the girls out (like babysitting but during the day)?

I have a chronic health condition that leaves me wiped out.

The last few years of my marriage, I could feel my exH's contempt for me seeping out of every pore of him. He did the bare minimum to keep the household ticking over but the blame and annoyance radiated from him. I left. Best thing I ever did. I'm still knackered and everything is still a struggle but I don't have to live with the crushing weight of his disappointment and I am so much happier in myself.

So show your wife this thread so she can read my sage advice - which is to walk away from you and your 'it's her fault's. You have no fucking idea what it's like to struggle every single day, and work full time as well, in addition to carrying around the judgement of your perfectly able bodied whining husband. Poor woman.

I would suggest counselling for you each individually, some sort of carer's support for you and then perhaps couple's counselling.

I am chronically ill and have lived in crippling pain for several years. I go through phases of being truly suicidal because I can't cope with the pain, side effects and how horrible some hospital trips can be. My DH works pretty high up in construction and while it isn't shift work, he often does 80 hour weeks and his phone never stops ringing. It's a high pressure job but one that he would have wanted to end up in anyway which I think helps. There are times when he's in hospital with me in the middle of the night, going home and showering and then heading straight to work. I make a huge effort to do what I can, when I can and also to make little token gestures of appreciation ie. making his favourite dinner, something like that.

So.....I very much, unfortunately, know your situation and what I will say is one of the worst things you can do for your wife is compare her situation to that of other people who have the same condition. You are meant to be her safety net, her no judgement buddy. Pain is personal, symptoms are personal, pain thresholds are personal. You cannot and must not compare her to others with bronchiecstasis.

I'm sure she struggles, whether she voices it or not, with now not being able to do some of the things she used to, like triathalons. She's also doing shift work and being a mother which are two hugely demanding jobs. Add in a body not functioning properly and I say well done her. As for blaming her, that won't get you anywhere and is going to make her feel terrible too.

I promise you she knows you exist. She's probably feeling very overwhelmed and spends all energy on work/kids/just getting by on high pain/symptom days. It's been years and I am still learning how to live with my illnesses.

Please both think about some counselling. It'll do the world of good. I wish you both well.

It's really hard caring for your family. I read your post and what resounded with me is that it doesn't sound like you have a routine down yet. I can't function without my DC having a preplanned routine. Tonight I will sit down and make the weekly plan which doesn't change unless of a catastrophe. Dinners go on there but those are planned out separately. DH is away this weekend so I'm doing it on my own. He knows better than to fuck with plans once they are set. If he is here he can partake in setting out the plans. Each DC gets one activity outside of school. They do music and dance/football in school which is a huge help me. Right now the only activity they do is swimming.

WRT cleaning and cooking your DC are old enough to help. Make it a family activity. My kids cook and clean with me at weekends. I use my slow cooker a lot. I just got an instapot too and love the pressure cooker for cooking up meals at the weekend for mid week. This morning I made two dinners for midweek in 30mins. It's brilliant for curries.

Once you get your routine simplified and preplanned I think you will find it a lot easier. Your wife needs to take care of her health. Give her that and she will get better.

Hi I support my DP with a chronic condition so I understand the feelings that you're going through. I have struggled with our lives being so different than we expected, the job sacrifices I've had to make, the emotional disconnection that chronic pain often causes. And just the sheer uncertainty of a progressive condition, and what the future holds for our family.

Getting counselling was the best thing I ever did. It's a brilliant outlet where I can share my feelings. Obviously in a relationship you get used to your partner being your main confidante and comfort, but my feelings about DP's condition drive a wedge between us. Life is still hard and draining at times but it's really helped improved things.

I hope you get the support you need. Maybe we should start a support thread for partners with chronic conditions?

No one wants to have a chronic illness, it would be better to get some help now because you can't carry this anger around for the rest of your lives, how will you feel if she becomes unwell, it's not her fault, none of us know what is around the corner.

It’s really hard being a carer. It’s also really hard being the one who needs caring for. Don’t underestimate how debilitating tiredness can be. You can’t look at someone and see how exhausted they’re feeling.

You’ve been pointed to some great sources of support where you can vent about how hard you’re finding it. I hope things improve for you both.

I haven't read the full thread. Why don't you contact your local social services, they will have details to put you in contact with support for carers. That support can be for both you and the girls. Stay strong x

There's a few really foul.comments on here, comments I daresay we wouldn't see if OP was a woman discussing her DH.

OP, it sounds like your life has somewhat been turned upside down. I think you need to talk to someone professionally in order to work through your feelings of resentment. You sound like you're trying your best and doing a good job but that anger will really get you down. I hope you can find some support.

Thanks to everyone that has made supportive suggestions. I hadn't thought too much about looked for support groups or anything like that because with us both working and her being up and able most of the time, i figured support was more for people who look after those with serious disabilities etc.

We have no family where we live having moved up north from the south 18 months ago however her mum is shortly to move an hour away rather than 4 or 5 hours away as she is now.

We both need to work financially sadly and there isnt much wiggle room for a cleaner to come in.

If her illness degenerates badly I will fall into a different "need" category at work which would increase flexibility and as of April I should be on a different team work fewer weekends but still earlies lates and nights.

I love her dearly and have no intention of leaving or anything like that.

Thanks to all of you for being supportive.

No thanks to one or two who know who they are!

You could speak to the British lung foundation about maybe getting support and financial benefits for you both. They have a very helpful website.

They will not be entitled to benefits.

OP as long as she keeps active and takes antibiotics when needed, it is unlikely to get worse. Unless there is an underlying illness that has caused it, but that should have been checked out.