Husband

[House1]

I have Bronchiectasis for over 2 years now some days I feel so ill ,my husband does not seem to care goes off to work dose not asked me how I feel comes home for dinner ,tv and takes about football and another things but not me ,my adult kids are just as bad I have no one to talk to am I just feeling sorry for my self or what

[Hidden]

Oh hi House1 and welcome to the club. I have had bronch since I was 3, for 66 years. My mother believed in tough love, I had to do everything all the other kids did and more in physio and exercise. My husband never acknowledged that I may have difficulties and during my divorce I was forced to have full medical examinations because he told his legal team that I was inventing it! My children have grown up with me just getting on with it and my daughter even took herself off to Scotland to look for wedding venues when I was really ill in hospital in 2015.

As for friends, aquaintances work colleagues etc. Don’t start me!

So you see, you are not on your own. At last you have found friends who know exactly how it is, have their own days when they feel sorry for themselves and really don’t mind when you have a jolly good moan.

Maybe we can also go through your daily routines with you and check up that you are getting the right treatment from a bronch expert not just the GP or a general respiratory consultant.

[House1 in reply to Hidden]

Thank you for caring it’s made me feel a bit better x

[Oshgosh]

So sorry you feel so bad..it’s very draining having a chronic lung condition. I wonder if you manage to get out?

Have you tried pulmonary rehab? I believe if you can’t get there they will provide transport for you.

It gets you out. I finished my rehab and I’m now on the free 12 weeks gym.i am feeling the benefit.i don’t go mad,did the induction,then worked it to suit me.

Now go to group for living well with a life limiting illness. This has really helped,there are people with different illness, at different stages.It feels very safe it is really helping me cope with an uncertain future.

Sorry to ramble on ,my adult kids ask sometimes,they find it hard to cope with it all,so tend to ignore it. Husband is supportive,but can’t/ doesn’t want to discuss stuff about treatment/ implications. It’s good to be in an environment where I can discuss my stuff.also means I’ve met some new friends. Perhaps you could google what’s available in your area or ask your GP.

REspiratory team can be helpful and point you in the right direction .

Sorry again for rambling,hope some of this has been useful.please take care of yourself.

[Kittykat2 in reply to Oshgosh]

A group with life limiting illness sounds good.

Where did you find that ? X

[Kittykat2]

Must be difficult when people live with you and appear not to notice or maybe care.

I live alone so no one notices unless they call to see me .....dont know which is worse to be honest.

Being alone can make things worse with overthinking when feeeling ill.

Kids care but maybe they are not sure how to help sometimes .

Hope you feel better soon🌺X

[Whitechinchilla in reply to Kittykat2]

I’m with you in that Kittykat2. I too live alone and it can be very tough.

Thank good ness for our extended family here who do care about each and everyone of us. I could not manage without this forum. Good wishes

[soulboy118]

Dont expect people to understand what your going through if they know nothing about the illness , im not making excuses for him just that hes blinkered as the fit and healthy always are , perhaps a nice chat over his favourite tipple night help

[Damon1864 Volunteer]

Hi no you're not feeling sorry for yourself, you need to talk about good and bad days and how you are feeling. You need to talk as well to let people know how you are doing and how they can help you. Maybe they just feel that they can't cope with your illness, they could be being just thoughtless but I bet they are finding it hard to come to terms with. Try and explain to them how you feel, but please remember you are never alone there is always someone here to talk to. We stand by and look after each other and are here to help and support each other. Please even if it's just to have a rant always remember we are here for you. Have a good day and look after yourself 😊 Bernadette xx

[House1 in reply to Damon1864]

Thank you Bernadette I will have a good rant x

[knitter]

Hi and welcome....this is a great site for support, many of us will have had similar feelings.

There is usually someone about even in the middle of the night....like last night when I couldn't sleep I noticed Bernadette was awake too.

Could you check with your local health centre , or your local paper to see if there is a Breathe Easy club in your area , or a living well with a health problem course.

A local charity ran a six week course that I went to. It was excellent. They also run easy exercise classes.

[Bella395]

I don’t think you will be able to change things. People are either caring or they’re not. You can change your attitude towards it though and not let it worry you. If you don’t expect anything you won’t be disappointed.

Sometimes people are wary of neediness so it might be best to be as independent as possible. Do all the right things regarding keeping yourself as well as can be and as has been said, looking out for things that you can do to get out of the house. Our hospice has a day section for people who have several long term conditions. If you have a hospice close by it might be worth asking if they have one too.

[Patsy164]

I am so sorry for you House1 I absolutely know what you are feeling. My husband is good but just lately I have been ill for about 8 weeks with back trouble and a flare up. I know he gets fed up with me always being ill as he has to do all the chores but I think men forget you have looked after them and the children for years without complaining. Friends too stop asking how you are because your always ill. It.can feel lonely at times. Try and talk to him and express to him how you feel and hope you can iron out all the bad feeling. I did with my husband and he actually looked up all my illnesses and said oh dear. I think he finally understands. Keep us posted and I hope you can get through to him x

[Caspiana]

Hello House1 .

Everyone has given good advice here. 😊 I just want to say , you are not alone. I think many people have this exact problem and it's both hurtful and upsetting, especially if your only contact is with family members. It's so easy for us to become isolated due to illness. Just know you have a community here that cares and you are not alone. Life can be good even with illness, sometimes we have to take the good bits , nurture the good to make more good and leave the bad bits behind. Do whatever you must to be happy. Life is too fleeting to do otherwise.

*BIG HUG*

Cas xx 🌞🌻🐶

[House1 in reply to Caspiana]

Thank you x

[ledge]

Oh House1 you are not alone. Having a chronic illness, they wont magically get better is draining on you mentally let alone the physical aspects. Its my guess you try to soldier on and have the stiff upper lip mentality and guess what, your loved ones, think oh that's good old wifey, good old mum - same old same old. Things can only change when you want them and will them to change. Perhaps a gentle talk to them on just how bad this makes you feel and perhaps ask for some comfort or help to make you bad days easier. Try to go to a pulmonary rehab, or a breath easy group and not only will it get you out of the house - and be along side people who, like you have varies limiting lung conditions. It will awaken your family perhaps to the realisation that you need support too that is external of inhalers and pills.

A big hug to you. and as my old Nanna would say, if you don't ask you don't get ....and even if you don't get - you B£oodY well asked....xxxx

[Izb1]

Hi House1, there is a way of searching on this site to find members who live near you, I just cant find it. It used to be in the left drop down menu on the right side, but they have changed this recently. I am sure that you would benefit from meeting up with people who have lung conditions so that you can talk over your problems. I think family and friends get fed up with hearing about our condition and just switch off. I live alone and find this site so helpful. Just remember you are not alone x

[HungryHufflepuff in reply to Izb1]

On my phone it's at the top, in the row of symbols that has the house on the left and my picture icon thing at the right. Click on the icon picture thing and the menu drops down from that. The layout is different on different devices I think though.

[Izb1 in reply to HungryHufflepuff]

What are we like, Im sure Stone is shaking his head at our interpretation, but we get there in the end, thank you HH xx

[Whitechinchilla in reply to HungryHufflepuff]

Please excuse the intrusion but I too would love to find others in my area, I have an IPad HungryHufflepuff so if I click on your icon I only get your details. Perhaps I should mail the B!F direct,🤣🤣ROFL everyone.

[HungryHufflepuff in reply to Whitechinchilla]

On the iPad you should see your icon near the top of the screen to the right of where it says Search HealthUnlocked. You need to click on your own icon which should be there. Are you using the HU app? I’m not. I think it’s laid out differently if you are.

[Whitechinchilla in reply to HungryHufflepuff]

Thanks for your time😉 yes I am so I just googled HU and I can go to MY ACCOUNT SETTINGS and click on “ allow others in my area” or something to that effect. So I will see what happens.

On another note I m currently researching miniature bunny rabbits as I am not allowed cats or dogs here and it would be wonderful to have a furry friend again.☺️☺️ Wonder if anyone here has a pet bunny?? Advice welcome if so 😉 presumably a rabbit would not affect my breathing co diction?? Guess I’ll have to research that too.

[Hidden in reply to Whitechinchilla]

I used to live in sheltered housing for the over 50's, and they allowed me to have my bunny - Asbo (Anti Social Bunny Order) at the complex. They even allocated me a downstairs flat, so I could have his hutch outside my door! He became quite a celebrity, with both my fellow 'inmates', and everyone's visiting grandchildren on weekends, all making a fuss of him and bringing tasty morsels. Everyone loved him, but not half as much as I did? RIP Asbo 2005-2014. 🐰🥰💔

[Whitechinchilla in reply to Hidden]

Hopalong

How very kind of you to reply.

What a surprise this morning and I adore your interpretation of ASBO.

I live on the ground floor and have a patio. And I am at the front of the building so you have given me the idea of putting cage out there when I am at home and then could bring him in at night.

YOU HAVE MADE MY DAY TRULY.

You are the only response I have seen so you have given me new hope.

Thankyou.

[Hidden in reply to Whitechinchilla]

You're more than welcome, and I hope you find a beautiful bunny to love and cuddle, and who will - in its own bunny way - love you back? 🥰

On a more practical note - will the hutch be in the sun all day, and is the area 'open' to animals that may hurt him/her? I was lucky on both counts - to be out of the sun, and having fenced grounds. I hope you're lucky to? 🤞

I'd love to see a photo of your new arrival...? 😍

[MoyB]

My father died aged 68 after a heart attack when I was 32. He had struggled with emphysema for several years. We lived 200 miles away and had young children and jobs. Was I there for him? I'm ashamed to say I wasn't, apart from phone calls. Even then, I had no understanding of the struggles he might be facing on a daily basis, even after Mum died (three years before him). When I started my own fight with asthma, COPD and bronchiectasis I began to have some understanding of what a struggle it must have been for him and I feel sad now that I didn't show more understanding. I feel sad that there must have been very bleak days for him, as there have been for me. I can't put that right! I just want you to know that sometimes it is difficult to imagine the difficulties until you face them yourself. Please don't judge those who don't understand - it may take them time for the penny to drop. xx Moy

[Hidden]

I agree House1 with all these wonderful people who have put in their 'penneth ' it hard when people don't understand especially if you're putting on a tough front which we all do at times, but it's upsetting when you don't feel strong and you want just plain and simple support and some comfort. Maybe your husband finds it hard to understand, mine does sometimes, and they don't know how to deal with it, but let's face it, it's not him dealing with it, it's you that is dealing with it. I agree with a couple of people at least on here, that you need to talk to him and try to explain. You know your husband better than anyone so I hope you can find a way of getting through to him. Sending you lots of love and please keep on talking on here, xx

[MacColl]

You certainly aren't alone.

After being in hospital with Ulcerative Colitis and sepsis - ill for the first time in 40 years - my husband and adult sons were excellent at looking after me, but it took many months for the colitis to subside and the steroid side effects to go ...I was just starting to pick up the pieces of life when I got asthma last summer.

Since then, it's been a battle trying to find drugs to relieve/help prevent it without giving me side effects ...some of which have been quite debilitating - and during all that, my husband, and sons too when they call in, have got fed up of me being unwell.

Sons rarely ask now, and show little interest when they get an honest answer, and my husband does his usual thing as if he's telling me not to bring the problem to him, but to go back to the nurse or doctor ...which I do anyway. I have an excellent doctor and asthma nurse.

My husband is very good with things such as helping with some of the cooking and some housework though because I'm self employed, and find any work difficult a lot of the time now. He does get impatient though at times.

It leaves me feeling rather isolated at home, as I can't just stop taking the things supposed to help me cope with it, yet apart from Ventolin, can't find something that works without side effects that are too unpleasant or difficult to deal with. Some risk the colitis flaring up again too, which is something I won't risk knowingly, and nor will my doctor. They just keep trying to find a combination of drugs that will work for me.

Sons just seem to keep hoping that next time they call in, they'll find me much better and happy ...and I do try! I think offspring of any age don't like seeing a parent unwell for long.

Someone obviously not familiar with the limitations of uncontrolled asthma suggested I try to go for a walk every day because it's bad for mental health not to! I can't even walk up my own stairs some of the time! Some people just don't get it. I'll happily go out with my dog regularly whenever I can.

Past experiences tell me that my husband isn't good with ill people, and would prefer to pretend that all is well, and that may be the same thing with your husband - they want things back to normal, and can't understand why no-one seems able to 'fix' things.