LUNG DIEASE & RELATIONSHIPS dear johns janes and not being quite dead yet

LUNG DIEASE & RELATIONSHIPS  dear johns janes and not being quite dead yet

Yep today post is bit of STRANGE one that touches all of us YEP RELATIONSHIPS what ever case might be ... and not being quite dead yet .

Having been a member for a tad I have observed the distinct lack of post addressing relationships and lung disease.

Yes I know it's highly personal issue others might not want to talk about but I think there are other members tad younger not ready to hang the socks up yet .... and there's nothing wrong with expressing a non-personal option on said subject.

I know BLF addressed approached subject with pen pals stuff ?

Anyway yep everything is being threw into the pot with this one .... for no other reason then why not

For example :

Do relatives family have quite a lot to say on a new existing relationships like you don't know your own mind ... best analergy is like palliative care but before it's needed or ya dead

Then we have illness trying to control your life are you better pretending your not defective ill .... Dose it mater as we are all born to die and know one knows what's round the corner really

Then we have lung disease are suffers any different than anyone else

I think not yet Some will get dear JOHNS JANES because of no other reason than your illness or they just can't cope

Others will be lucky whether its new or existing relationship because a loved ones accepted your illness as a part of you and can see beyond that thus realised that the good in you outweighed the bad no mater what the future holds

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  • Good subject Daz. It isn't just Personal relationships it effects either. It effects family and friend relationships too. I was lucky in that I had a very solid marriage when my lung disease was diagnosed. Rib

  • Hi ribvanRey cheers thanks for comment yer I never really thought about friends but yer it dose too

    Yer is hard subject glad you shared this with us and all was well with your relashionship marriage

  • On the other hand adding lung disease to the list of existing problems broke the camels back as far as my close family. They pretend my wife and I don't exist. Will not reply to mail, email, text, or phone calls. Rib

  • Hi ribvanRey yer a was in relashionship 16 years back and my brothers did that to me ... Is hard but you had solid loving marriage and a think that's what counts esp if family are going to be like that

    Cheers thanks

  • Great post Daz, on a subject I often think about. I lost my partner about 5 weeks before my diagnosis, nearly 3 years ago. We had been together for over 30 years. I already had Fibro and unconnected tissue disease when he was around and he often complained about the impact my illnesses had on our lives and it made me feel very guilty.

    I'm not looking for a relationship because I still miss him too much, but, I do sometimes think about the fact That I'll now be alone for the rest of my life and I'm only 54 and it is a rather depressing thought.

    I tell myself it wouldn't be fair to expect someone to take me on, especially as I won't get any better. I'd also be afraid I'd get hurt if I let someone in and then got dumped because they couldn't cope with it all.

    I know a couple of people with lung disease on here have met new partners but, I've also seen a couple get dumped because of it too. Relationships is a delicate subject, but one that we all must think about single or not.

  • Hi Casper99 cheers thanks for comment ... Yer I went threw guilty stage to yer my x made it easy for me tho when I first developed symptoms ... She wanted to do stuff and I could'ent she did't undestand why I never and was always tired.

    But yer can understand how others have meet on here you would think they would be tad more understanding ... wish them luck tho as nothing wrong with it in my option just hope it works for them

    But yer is hard one this single business DO I DONT I but yer you do mis companionship ... been there done that

    Yer Iv never been married myself don't have kids I thought when I was fit well I would have loads of time al wait till meet right one ... Then look what happens .... Let that be lesion for others about what's round corners

    LIFES so unpredictable

    Cheers thanks

  • Lost my hubby 2 years ago although he and the family understand my lung condition I can't think about another relationship as I feel guilty about my lungs :(

  • Hi VictoriaBlue sorry to here about your husband can only imagine the loss you have been felling .... Think we have all had feeling's of guilt esp in relation to what we can and can't do ya defo not alone there

    Cheers thanks for comment

  • Hi Daz, I love my hubby to bits but do feel guilty on the strain this illness is putting on us, I'm only 41, and without being to personal the physical side if our relationship is nil, not just because of not being able to breathe ( cuz that does help ) but the illness it's self ( alpha 1 ) has also taken away any drive to do so, falling asleep b4 my kids do don't help the cause either lol, I am worried that although he loves me to bits aswel, ( he says all the time ) he is only 45 himself and yes I know sex isn't everything but at our age is it right ??? Will there come a time when he wants and I can't, ( scarey ) and as for outside relationships I couldn't care less if my illness leads to them shying away then they weren't good enough to be around in the 1st place. I hope my post doesn't offend anyone. Take care x Sonia x

  • Hi Sonia1972 cheers defo know how your feeling ... Is hard coming to terms with illness and guilt esp when trying to maintain a loving relashionship.

    Your not on ya own there YER ad try remain positive as am sure if roles was reversed you would do same for you husband unconditionally so ad try not to feel to bad.

    Am lucky really have been on both sides of the fence with relationships ... One was a friends with benefits as term used these day's ... That was quite a roller coaster she had more arrows than a Cupid and blew like a weather vain .... Think that was more to do with bipolar then how we conducted our self .... and other was dumped as a defective

    What you are feeling is your bodies natural response OXYTOCIN when you love someone a great deal there is more than physical action's at work

    That's what's great out us being human as we communicate with sight langue spoken or written words that's gets ya OXYTOCIN going weather we are defective of not PLUS as humans we don't have to worry about predictors eating us

    That's why mills and boons books where so popular

    so I think given bodily processes av talked about weather internet relashionship or as in many case's loving relashionship can work and do last and don't have to be that physical

    As the process you have described and we are talking about is OXYTOCIN or it's other name love .... the good thing is it's quite natural to feel the way we do

    The bad news is there is no cure .... and that's why we feel for a better word love sick

    As it's a little misunderstood process that causes your emotions to go haywire .... Some know how to control them and others shy away from them

    On a personal note : if you would of asked me few years ago or even a few weeks ago do I believe you can you mis love something you never had .... Ad would of said that's ridicules but given oxytocin and what I said about mills and boon books ad say yer sure

    How mads that .. Thanks for comment sharing Sonia sorry about going on

  • Hi Sonia, i love your posts, dont put much on here but it makes my day scrolling through and getting so much advice. Like you i love my hubby to bits, and him me, or so he says! But the physical side, like you, is nil. Although i am a lot older than you, 63, age is just a number. Would be interested to what other peoples views are, on this touchy subject we dont like to mention! So you certainly havent offended me, in fact you made my day. Sorry i cant be of help to you though. Take care Sheila Xx

  • Thanks Sheila, it is a touchy ( or lack of lol ) subject, it is hard ( he wished ) on both sides ( all the things I'm writing are making me laugh due to the nature of the subject ) it's all I can do now is laugh about it, luckily so does he. Love will conquer all hopefully. Take care X Sonia x

  • Hi Sonia, it is very difficult with the physical side in our relationship we have been together nearly 40 years, I was diagnosed with COPD 3 years ago. At times due to my condition, I do not have the energy or inclination to particpate, and my husband can become quite stroppy, however he isn't very demanding, so I try other ways, I find wearing my NIV mask helps to some extent, or I have my portable oxygen. My advice to you is to contact British Lung Foundation who have published a book with a lot of useful information, demonstrating exercises etc it also has a section with visual information as to different positions which maybe of benefit with the physical side. I attended a six week COPD rehabilitation course and was given this publication which I still refer to. Hope this is of help to you and good luck. PS You could also ask advice from your specialist respiratory nurse.

  • Thank u amber at the moment due to being tired all the time I'm happy just going to sleep but I'm not selfish , I will ask and take ur advice which is much appreciated. Take care x Sonia x

  • We'll done Daz.it puts a great strain on relationships,both family and friends.l have knocked myself I'll trying to hide my struggling.not now,l have learned to say no to things that are too much,however there is a price to pay including isolation.loose of company with both friends and family and struggling to do tasks on my own e.g.changing the bed is done over two days.its a heartbreaking situation.all this resulting in increased isolation.making me feel like a fraud"once again l will say...if l had a bandage l would get more sympathy..not a thought to what l have lost ..physically..socially and emotionally.

    l admire you stating the facts that occur with this condition.for years l would say I'm fine.l am not.away to put my lippy on , order a taxi and get out for a while

    Nellie

  • Hi Nellie15 cheers thanks for comment ... Yes you not wrong there or alone I think that is a common theme with our conditions

    Yer I have noticed myself about friends to MINE a don't think they like seeing me I'll don't think they can handle it .... But are good mates as only have to call and there here .... am very lucky as they have done more to help then my own brothers WHY because like most when you ask they have there own life's

    Is a hard one illness and isolation seem to go hand in hand weather young or old ... Well apart from if your lucky enough to have a loving caring family around

    Cheers thanks for sharing it with us

  • I have a very supportive husband and close family/friends but a few on the periphery have backed off as they don't want to deal with my illness, I find this quite upsetting to be honest as I'd thought of them as good friends originally!

  • Hi, you've hit the nail on the head about friends bailing out. My partner passed away and my SIL jst suddenly stopped coming after being here every day for 16 yrs. To say I was hurt is an understatement. I can count on both hands how many times she's been in almost 3 years and 2 of them were just to use my toilet !!! Obviously, it wasn't me she was coming to see. I'm not one to hold grudges but, I'll never feel the same about her ever again.

  • That's a very difficult situation, I had a good friend who I hardly ever see anymore, she doesn't seem to understand why I can't work anymore, I reckon she thinks I'm just being lazy, she's always giving me ideas of things I can do which I find very annoying lol!

  • People find it difficult to understand,that people with COPD have good days and bad days. sometimes it appears the COPD sufferer is coping very well,and gives the impression there is not too much wrong with them,little do they know,the length of time it takes us to get ourselves together in the mornings! first its finding the motivation,after another lack of sleep night,then the breathlessness from getting dressed,next is the medication,and inhalers. having got through this lot,it may be possible to do a little exercising, or manage to drive the car to that important appointment to see a specialist,normally I try to visualise everything so I can leave home in adequate time for everything, i.e I allow 30 minutes to get to my allotted hospital appointment,from the hospital entrance,I usually arrive a bit early so I can relax before I get called in.

  • Hi Mrs Shimmy sound abit like that saying about Fair Weather friends your periphery friends family ... Think we all have family members friends like that

    Is upsetting ad be wrong if I said it wasn't but sadly that seems to be common issue with illness disease

    Can take solis in knowing you have supportive loving family and close friends you can put your energy into rather than those to busy to care

    Cheers thanks for sharing

  • Hi Dazer,trust you to open up a can of worms lol,it,s very courageous of you to brink a subject most of us shy away from,good on yah mate.We more than most have to be very forthright with our problems.Because our illness is not usually evident,no physical sign we have to be strong personally.So many times I ended up having a massive exacerbation

    Because I tried to do something quickly for somebody else's sake.It was the physio at PR that told us all that we have to think of ourselves more.It is US that will suffer if we don,t let others know how badly we are affected because it is not obvious.We have to speak out and tell everybody that we are really sick.This is not easy, particularly if we are use to looking after others.Most of the time we cover it up then now and again I break down in tears (old macho me lol)and tell my wife how difficult it is coping and we start over again with a little bit more understanding.It is hard work but I feel sorry for those on their own it must be really hard.Brilliant post Daz,hope you are well!D.

  • Hi FarmerD nice to see ya again yep ... thought ad see what experiences others have had .... Defo know what you mean about exacerbation MINE av been more over excitement relationship stuff that's other reason for post as if I understand a can try control my exacerbation

    There's been loads of comment covering issues of all sorts ad never even thought of

    And a do applauded them all for sharing there experiences with us in order so we can understand just what our conditions can do and like you say what we can't see

    My next mission is understand OXYTOCIN and exacerbation it causes esp in relation to disease

    Thanks for sharing commenting defo nice to see ya chew the cud

    Cheers thanks

  • drugs.com/mtm/oxytocin.html ive read your post Daz, I agree with others, that at times its not easy, friends fade away, the tru 1s stay wich arnt many tho,, but the 1s that have are true, family well what I tell them anyways asnt been the answers I expected but in the long run thay make sense ,anyways wishing you all the best,,xx

  • Hi Twiceshy3 cheers thanks for comment sharing ... Yer I know what you mean about family friends can be hard one BUT like I have experienced family friends generally don't understand our conditions let alone our needs ....

    We all know really what the end of the roads as in store for us but it's no good thinking that far ahead .... Ad side with here and now myself as like my lung doc says you could go out of hear and get hit by a bus so what's that say about end of the road when you look at it that way

    When my lung doc told me that I thought strange thing to say but it was voice of experience as he lost is son at school playing rugby so when he said about keeping stuff in perspective esp when you take stuff like that into account

    You can see why I say about the here and now

    Great link twiceshy3 very informative cheers always nice seeing ya

    Thanks

  • Hi daz, im 50 and was diagnosed with severe copd 3 years ago. Like the others "friends" seem to dissappear! And my husbands family have fell off the face of the earth!!! I think things are hitting us now, we are so much in love but I think were lonely, i miss having people to talk/moan to and I know for a fact my husband needs someone too. If we try to talk to eachother its so upsetting and I cant breath! Sex well I think weve given up. My husband doesnt seem to be able to because he is too concerned about my sob, he says that he doesnt mind because his love for me is so strong. I miss being close and it makes me really sad, he is only 45 and I feel as if this horrible disease has robbed us and im stopping him from fulfilling his/our dreams. Cant really say any more my eyes are welling up, who said life would be easy? Xx love to you all

  • Hi McNally cheers thanks for share yer my eyes are to it quite a emotional subject and like you say is a horrid disease illness

    You know you have friends on here a know it's not quite the same but think helps somewhat .... I wish I had all the answers fixes and there was a magic pill but sadly there's not ..... but av never give up looking or hoping

    As far as getting close I know emotion hormones can effect our breathing when we try and get close but until this post i did not know the cause

    The culprit is OXYTOCIN and cause of exacerbation's when we try get close ... don't really know what the fix is BUT I can assure you in quite natural bodily process that others shy a way from like you have described in your comment

    Wishing you both well and thanks for sharing

  • 8 years ago my partner who was only 39 had a fatal massive heart attack out of the blue and i was left to bring up the children........

    ive been single since he dies because i wanted them to be ok and thought i would have plenty of time for dating when they were older

    now they are older and ive got no chance of starting a new relationship and i often feel ive been robbed

    as for friends i backed away from most of them because i felt so much pressure to get up and do things and go places they just didnt accept i couldn't do it and then there is the family who say if you need anything just ask and when you ask they dont do it or think you can wait a week because your not going anywhere

    I never expected this illness to affect almost every part of my life but it does and i hate it....i get told by the professionals im going through a sort of grieving process and that's the problem ...I HAVNT DIED im still me but no one seems to see me anymore

  • Hi Mandy6513 thanks for sharing am very sorry to read about your partner truly am I can't even put into words what a great loss you and your children have suffered.

    Then to have this horrid disease illness threw on top would be last straw your quite right in feeling robbed and you have no wonder you had to get on and do stuff ... Think everyone on here would of done same ... sounds like escape mechanism your way of copping and if it was me ad defo be doing the same along with others am sure

    Yer when I was tad younger a thought same about plenty of time even tho different circumstances we find our selfs at same place along with others looking for answers a way out or even a sympathetic ear some way of improving our personal circumstances

    I wish I had the answers Mandy but all a can say is as I have found is when you need to talk vent ya frustration ... and your family friends have failed you

    You have you friends on here ... Who like me hear you

    Cheers thanks for sharing

  • That was a good subject to raise Daz, health problems do effect your relationships. I don't have a husband any more, however I feel my friends exclude me on occasions because of my illness and disabling effects. In fact society in general tends to exclude in many cases of illness, it is often to do with peoples perception of how illness affects your capability. I will quote famous words "see me not my illness", we are humans with characters, personalities and capabilities including feelings. Take care Daz

  • Hi Katieoxo60 cheers thanks for comment sharing ... so sorry to hear about your husband is can be hard subject to address and and thank you agin

    Totally agree with what your saying about society and we are humans very true and quite right .... Cheers

  • I've just received my decree absolute, I'm apparently a burden to my ex, my kids & the state, so yes Daz this bloody illness does destroy relationships,

  • Hi sillywitch y'all have to excuse me for one minute a thought you decree absolute was some form of diploma ... Y'all have to excuse me

    I was just going to congratulate you.

    That's lung disease for us but yer a remembered what it is .... And so sorry really your know more a bourdon then I am or any of us

    As we can see by all comments it's truly not us it's this horrid disease and our society .... we can't all be wrong

    Cheers thanks for sharing truly hope you get things sorted cheers

  • Hello Daz, My husband & I have been together for over 40 years now, both of us have changed through the years, that seems to be at the core of all life -some Greek Philosopher once said, 'change is the only constant in life.' I'll go along with that...

    We were not fortunate enough to have children, so we depend solely on each other for both emotional & practical support . I do have sisters but other than one, who lives at some distance they do not want to know. Even when I had cancer they didn't visit; when contacted they said what's different, you are always ill. Well I am not always ill but I grant, often.

    I had many friends of long standing but gradually as my activity ability reduced, they drifted away. Usually, I join in with Breathe Easy groups & exercise groups but since mum's death I have been more distant from the world, We go on holiday with people from a retirement club. So I keep in contact with people but it is hard to replace friends of over 30 years.

    I hope you do meet someone Daz; you have made me realise how fortunate I am.Problem is I can live with the though of something happening to me but if I lost him, I can't imagine where our dog & I would be. Mx

  • Hi Scorpiolass Cheers thanks for sharing .... So sorry to read about your sister's

    At a hard time in you and your husbands life with regard ya cancer

    It's common theme it seem's family friends turning there backs ... At least you have each other 40 years ... That's so sweet and if am honest yer I would of liked to have gotten married with such a aim ... It's not like am religious it's what marriage represents mainly

    Is good you have each other and are getting out more also a do believe it helps if you partner husband talk and are like friends defo a plus plus

    As philosophy or even philosophising I often wonder what's would of been .... But yer a don't dwell on what ifs it's mainly here and know I think about

    When I was undiagnosed it was horrific and relationships was last thing on my mind BUT as you get use to how things are .... you start thinking about why should I have lung disease rob me of everything ... Is It's not bad enough it's trying to rob us of our life's with out us helping it

    Cheers thanks

  • I have had COPD for just over 3 years. I'm one of the lucky ones. My partner is very supportive. She cooks meals and finds foods that help with my lung condition. My children ( All 18 and over ) take my illness as part of me and it doesn't bother them except to tell me to take it easy if I'm trying to do too much. I've moved away from my freinds down south but am still good mates with them when I visit every few months. They also take me as I am and it doesn't bother them either.

    As for the people who think they will be left on the shelf. I split up with my previous partner of 25 years about 6 years ago. We are still good freinds and always will be. My present lovely lady is 20 years younger than me and is a godsend. You're never too old to rock and roll ! Have faith. Things turn up at the least unexpected times.

  • Hi Puffthemagicdragon cheers thanks for sharing yer is nice to read exceptions to what seems to be common theme of isolation doom and gloom and gives us all hope .... If that's right write term to use

    Yer was quite surprised to hear some add entered into relationships a thought illness and single was pathetic but yer defo I agree with you about not hanging your socks up quite yet .... and getting that sort of thinking out of ya head

    Cheers thanks

  • There is no lack of understanding between my wife and I, we always did things together. I have been on Home oxygen since February due to IPF and blow me my wife joined me on Home oxygen in March due to damage caused by a pulmonary embolism. So we both understand each other well, apart from when our pipes become a tangled mess!

    Also these 'double' cases must be rare, poor old Air Liquide seemingly cannot get it thro their heads there are two of us at the same address, they send an engineer around to service my machine and when I ask him if he is going to do my wifes he says he knows nothing about it! Then the following day the same guy is back to do hers, and trying to get our portable bottles changed on the same day is a nightmare!

  • Believe me, as a company, Air Liquide struggle when there is just one customer at an address. Ever since they took over our region there has not been a month when something has not gone wrong. If it was not for our old engineer having moved to Air Liquide when the change over happened we would have had a lot of 999 calls just to get me to a hospital so as to use their oxygen. Having to rely on them for both of you must be a constant nightmare. I feel for you both Alan. Regards Rib

  • wow another Daz can of worms opened there!

    I fully agree people do not see the problems we have as we often put on a front! What they do not feel is the pain in our bodies and mind not being able to do all the things we thought we would do forever. Relationships just have to be adjusted not changed. My family remember my long stay in ICU the Doctors telling them I was not going to survive the night many times. The months of been reminded by my doctors and consultants how lucky I was ! Then years later being told I am sorry but we do not have a magic pill for you. I want and I am sure most of us do, is want to be able to do as much as we can without pressure from any outside source be it employer, family or friends. Because we are not missing something on the outside does not mean we have something missing on the inside.

    Be Well

  • Hi Offcuts Cheers thanks for for sharing ... Nice to see ya fella hope alls well YUP Defo agree with what your saying also as been nicely put .... I know illness disease isolation can make you feel quite pathetic and just like we have to excersise to maintain our health we do need to stay as active as we can with out being penalised like you rightly say

    Am sure it cost the health services as well as us a great deal ... One could say our medical needs might be meet but we are just abandoned and left to get on with it ... am sure if was informed more about what to expect and told about pacing stuff out things would not be quite as bad ... Instead we have left to search for answers

    Yer your quite right offcuts cheers yer always nice seeing ya chewing the cud

    Cheers

  • my illnesses seemed to take friends, familiy and a divorce. even my kids dont come around. i think its the dying part or seeing me being weak that bothers them. but i cant help that so i go forward and tell myself people handle things differently. i at times will cry about it. but try to keep a positive outlook anyway. at times that is hard. its like when you need that hug no one is there. when you need that shoulder to lean on its not there. when you try to figure out just what it is your fighting for its hard to see. so yes my illnesses have cost me alot. but i also have learned so much and see so much more in the world. so yes this is a good topic.

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