Scared and alone 🥺: Tonight I sit here... - British Lung Foun...

British Lung Foundation
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Scared and alone 🥺

Moolies
Moolies

Tonight I sit here feeling quite anxious myself and my partner who has his own set of issues mentally went to go and see the respiratory specialist not only have I got the COPD emphysema asthma and some sort of Bron chitinous that widens the lungs are slightly longer name than that couldn’t get my tongue around it LOL my partner wanted to open champagne because he said that everything was mild to moderate and got furious when I was crying he has gone to bed and will not talk to me saying that I have mental issues and I’m a loser he has his own issues trust me🥺 but I sit here alone I have had a bottle of wine and I feel hopeless xxx

87 Replies
oldestnewest

Oh Moolies, you're not really alone! Soon there will be lots of people answering your post. That's the thing about lung problems, they isolate us. Fortunately there are places like this forum to help us through the process. Grab that brass ring, find something, no matter how simple, that comforts you. I sometimes watch old movies, in black and white to make me feel better.

grannyk 📺👵

Moolies
Moolies
in reply to grannyk3

Thanks grannyk3 it’s just so sad my partner cannot embrace anything negative he has come unfortunately from And extremely dysfunctional family his sister committed suicide last year his mother has severe mental problems and his late father apparently was violent in his younger years so my partner definitely carries mental problems without if admitting there is something wrong with his mindset unless everything is positive he cannot deal with negative people or people being depressed therefore I have a little chance the support I need today😬Thank you so much for your reply and your support

grannyk3
grannyk3
in reply to Moolies

You're welcome, Moolies. I know what it's like to not have a supportive partner and I am so sorry yours is like that. It would be so easy for them to be supportive, it's not like we're asking that much from them. Life throws a lot of negativity at us so at some point we have to learn to deal with it. Cas is right, it will get better.

grannyk 🌺

Thanks grannyk3 it’s just so sad my partner cannot embrace anything negative he has come unfortunately from And extremely dysfunctional family his sister committed suicide last year his mother has severe mental problems and his late father apparently was violent in his younger years so my partner definitely carries mental problems without if admitting there is something wrong with his mindset unless everything is positive he cannot deal with negative people or people being depressed therefore I have a little chance the support I need today😬Thank you so much for your reply and your support

Hello Moolies , 👋

It is very hurtful to not receive the comfort and empathy you need after receiving unfortunate news. Believe me I know the pain of that. In some ways it's worse than the news itself. Right now everything must seem so very bleak and trying. But I hope you will get the right treatment and slowly get on an even keel. I don't know anything about your partner or his struggles, but I would encourage you to surround yourself with people who CAN empathise and people who build you up rather than tear you down. This is a wonderful group. Everyone is very supportive and you can get done good advice here. Please know you are not alone. Take heart.

Sending best wishes to you,

Cas xx 🦋❤️🦋

Moolies
Moolies
in reply to Caspiana

Thanks cas I need all the support I can get as partner says iam a drama queen and said I wanted to be with ill and crave this!!!! Most disturbing comment wish I could be free from this x

Caspiana
Caspiana
in reply to Moolies

You can be. Not from the the disease, but the other nonsense. You can be. Get yourself on your feet first. You deserve better. You can have a better life. *HUGS* xx 🍀

Moolies
Moolies
in reply to Caspiana

Thanks 🙏

Dear Moolies, our wonderful wise Caspiana has said it all. I am so sorry that you find yourself in this position. As she has said please try and find people who will support you. Family? Friends? This forum is brilliant and there are plenty here who have been through similar set backs and have been able to journey on to a a more comfortable place. I hope you feel confident with your medical team.

Hang in there, keep going and feel free to come here and have a moan, we are good with virtual hugs and tissues.

All the best

Kate xxxx

Moolies
Moolies
in reply to Katinka46

Thanks so much kate

Problem is if they haven’t got it they don’t know how hard it can be my husband and I separated over it because he didn’t want to deal with It PUT YOURSELF FIRST

Bingo88
Bingo88
in reply to Help_61

So sorry to hear that your husband decided to walk away and not help you through dealing with this health problem hope he can live with himself i could never walk away. Hope you are Stronger to deal with things . Hope you have a good day Brian

Help_61
Help_61
in reply to Bingo88

Thank you .YES he done me a Favour I’m much happier now 😘

Moolies
Moolies
in reply to Help_61

He was great when I had a relapse but He couldn’t understand why I didn’t leave there jumping through hoops I told him it’s COPC and two other lung conditions and he just couldn’t take it in

Help_61
Help_61
in reply to Moolies

Sorry to here you feel alone I hope you have children to support you

joyce74
joyce74
in reply to Help_61

My husband who would do anything for me and the family doesn’t react well to any bad news re my health and doesn’t want to visit a GP about his own, I see it as anxiety he suffers from. Which I luckily don’t . My daughter goes with me to any appointments . I fill him in when I get back. Hope you have someone you con confined in. You are always welcome on here

Caspiana
Caspiana
in reply to Moolies

😔

Moolies
Moolies
in reply to Help_61

He can be very ignorant to it and can’t deal with it It was really good when I had a relapse at doctor thought it was just asthma until the specialist at all the tests

Dear Moolies, I just want to say we all understand, and we are here for you any time Day or Night, Sending Virtual Hugs and Empathy with lots of Love. C. XXX

Moolies
Moolies
in reply to Hacienda

Thanks so much xxx

It's so difficult for other people to understand an illness that they can't see and have no experience of. If you'd broken your leg you'd get support and sympathy. It's the dreaded case of "You look well". They can't see anything wrong therefore we must be OK and should just get a grip and stop making a fuss. One oughtn't have to understand an illness to offer support yet too often that seems to be the case. I'm sorry to know your partner has his own problems and can't help you in your time of need. We are here for you 💐

Thanks so much really appreciate everybody’s help xx

Moolies please you may feel alone where you live, but you are not alone here. Please talk to those who understand what it's like to have these conditions and concerns. It's true what some say, you really are isolated with lung disease within the family. And that's upsetting h. At least you have messaged here and although I've just joined it was my understanding that you could talk here. I have a long history with copd, chronic brittle asthma, bronchiectasis and now electric atrial fibrillation to my heart, and costchondritis. I once phoned the BLF helpline at the end of the chest infection. That phone call changed everything for me. I had never told anyone about what happened during infection. I found out that it happens. I cried with relief. I will never forget it. In my family I have felt alone.I under stand so please keep talking. And keep active too. Whatever you can do. Take time out of the home and enjoy what you love. All the best to you. You are not alone anymore.

I am sorry for the difficulties your partner is having. Here for you moolies. Best wishes to you.

Moolies
Moolies
in reply to KarenF8463

Thanks ❤️

Hacienda
Hacienda
in reply to KarenF8463

A good reply from you Karen, Glad you received The Help from BLF and can now Implement this into your Positive Attitude to Moolies & everyone. Much Love. C, XXX

Moolies
Moolies
in reply to KarenF8463

Thanks Karen My ex husband had Multiple Sclerosis and I had to be the carer and watching decline my children now look to me to be the well one I have to try and hide this as long as possible I work and I keep active I get days when things are struggling my ex husband had Multiple Sclerosis and I had to be the carer and watching decline my children now look to me to be the well one I have to try and hide this as long as possible I work and I keep active I get days when things are strugglingxxx

Sorry to hear your partner is not more supportive. Moolies. Its common sense after being diagnosed with C.O.P.D. that your thoughts are all confused and scared. I know i was panicking when i was diagnosed. I thought my life was about to end. Please please try to stay positive, there are some lovely people on here with the same problems. We are all here to support you and each other . Hope you have a better day today. Please keep in touch Brian

Moolies
Moolies
in reply to Bingo88

Thanks Bingo I will do I didn’t realise so many lung diseases seem to overlap xx

Hello Moolies,

I’m so sorry that you are living with such a selfish and unkind man. I know what I would do about him! Such cruelty and negativity is no good in your life.

You are not alone in this.

I have had bronchiectasis all of my life. I think this is what you have been told you have in addition to emphysema and asthma. From childhood I have never been treated as different to others. Nobody in my family, including my Mother ever sympathised or put their arms around me when I was struggling. My husband never acknowledged how it was for me and I faced ridicule and criticism at school and at work because I looked well even though I coughed and at times didn’t have the energy . Nobody has ever been to a hospital appointment with me.

I learned very early on that this is down to me. If I was going to have a life I had to get it by the neck and control it. It is important that you have a good consultant for your bronchiectasis and asthma because GPs don’t know anything about bronchiectasis. You need a good daily routine and knowledge of your meds. Only the consultant can decide on this .So work on finding one as soon as possible. We can help you with the day to day management of your conditions.

Once you are in control you won’t feel anywhere near as frightened and you won’t need support from people who are unwilling or unable to give it.

I eventually kicked my husband into touch and divorced him. Life has been brilliant since I got rid of his malevolent influence.

Your conditions are mild. Learn as much as you can about them from BLF and other official information and live your daily life as you need to keep you as well as possible. Other people just have to go along with it.

When you need support come to the lovely people on this site. Between them they all live with all of the conditions which you have. They have bags of experience and most of all they have been walking your path for a long time. They Understand!

Life goes on. One day at a time. You are the same person you have always been and you can be stronger. Just don’t let the turkeys get you down!

A great reply. You are in control of what happens to you and who you have in your life.

Most of the time,wellaners but we all have our wobbles and it can take those who have to adjust to life with a condition time to come to terms and adapt. It is at times like that when the fantastic folk on this forum hold me up.

Amazing replies Moolies from those who know what it’s like to have lung disease.

From a carers perspective, I do all I can to look after my husband Pete and have always supported him but I don’t have the problems your partner clearly has. If he doesn’t seek the help he so badly needs, you may well have to walk away from him when you feel strong enough to do so. Life isn’t all positivity I’m afraid, that’s not how it works.

Put yourself first. Wishing you well. We’re here for you. Xxxx

Moolies
Moolies
in reply to sassy59

Thanks sassy I’m just really scared I want to stay well I’m such an active person I just won’t be able to cope not being active the doctor was quite positive and told me to go out there and stay fit and active

sassy59
sassy59
in reply to Moolies

The doctor was right, staying fit and active is a good idea. It takes time to adjust to a diagnosis and things seem scary at first but you’ll get there. Thinking of you. Xxx 😘

garshe
garshe
in reply to Moolies

That was great advice, It is scary when first diagnosed but dont give in. You have to be Positive and dont Google anything. Best advice is here as we live with these conditions. I was diagnosed over 10 yrs ago Severe COPD and still here. There are others who were diagnosed longer . Hope your hubby comes round and support you.x Sheila

Moolies
Moolies
in reply to garshe

Thanks sweetie xxxx

Oldspark
Oldspark
in reply to Moolies

Hi Mollies

I was diagnosed with PF (pulmonary fibrosis) over a year ago, I have never smoked, but been fairly active, when I was told that the disease had got worse I was in the depths of despair, as I did not want to talk to anyone about it, but finding this site, was the best thing that happened to me, after that I was able to open up to family and friends.

Stay very positive, and get yourself out and about, take up a hobby if you do not have one, but staying positive is the best way forward, listen to your body, it will tell you that you are having a bad day. Then get on this forum say how you are feeling, you will always get virtual hugs and lots of love here.

The support is second to none.

Good luck and best wishes and God bless you.

Ernie

XXX

Moolies
Moolies
in reply to Oldspark

Thanks Ernie wishing you well❤️

welllaners
welllaners
in reply to Moolies

Don't be afraid to exercise, when I was first diagnosed I got a pup to keep me active, she is now 3 years old and we go for long walks on the beach during the summer and wet cold walks in the winter, she keeps me motivated when I am feeling low. I can now walk 3-5 miles, something that wasn't expected, my stats have even improved. You must keep positive and look after number one. You can do this! You just need to motivate yourself to looking after what's best for you, start putting yourself first.

Moolies
Moolies
in reply to welllaners

Thanks I do walk now and yes it’s helping me xx

Thanks sassy I’m just really scared I want to stay well I’m such an active person I just won’t be able to cope not being active the doctor was quite positive and told me to go out there and stay fit and active

He was great when I had a relapse but He couldn’t understand why I didn’t leave there jumping through hoops I told him it’s COPD and two other lung conditions and he just couldn’t take it in

Dear Moolies, I can really understand you feeling lost and alone after your recent diagnosis and your partners lack of empathy on how you are feeling. Its easy to become downhearted, for lots of reasons. But for the moment, try to surround yourself with kind supporting people. Try joining a local breathe easy group, you will find lots of lung and breathing challenged people you can relate to. The exercise and the companionship of that group will certainly lift your spirits and help you physically too.

Speak to the BLF helpline, to learn about your condition, and how to help yourself. All knowledge is power and right now you need self empowerment to get you through. Reach out to this group, you can see that lots of people have responded to your call, so you are not alone. Speak you your GP about getting on to a rehab programme, that will reinforce all of the above. When you are recharged your emotional energy, I am sure you will learn to reject any negative energy - as that's a not my problem approach. Keep in touch with the group. I know that there will be a lot of people rooting for you.

Moolies
Moolies
in reply to ledge

Thanks ledge I will do iam so scared of were I will end up I don’t want to get worse I think I will end up melting down😫 thanks for your support ❤️

Sending you hugs, it's hard when the illness is hidden inside us and people around us don't understand . Take care. Stay logged on to this wonderful group. There are lots of people with excellent advice and humour to cheer you when sad. x Anita

Thanks I will do I work pretty hard so I’m not on here all the time but it’s a great help and support and I appreciate everybody’s comments and help❤️❤️

((((Hugs)))) Moolies.

Moolies
Moolies
in reply to Ergendl

Thanks 🙏

Hello Moolies, sorry your partner is not understanding your worries. It is normal to worry when you have a medical issue, and I agree that it is mental or a nicer word is emotional . But that is not serious mental health problem, its a normal reaction to physical health issues. Crying is a normal way of releasing your tense feelings. Now both of you will need to appologise and try and mend the rift caused by argueing. Afraid the bottle of wine can only be a comfort , with short lived results, many people turn to chocolate which is my favourite as I don't have a partner to fall out with.Best wishes to you both. It is normal to fall out now and again.

Moolies
Moolies
in reply to katieoxo60

Thanks I’ve cried a lot today just needed outlet xx

I know that feeling and I know that it is easy for me to say but we have to pull ourselves together and get on with it because if we dont we will go down a long road to craziness hope you dont have hangover after your btl of wine and that today is a better day for you x

Moolies
Moolies
in reply to Valerie01

Thank you it was more than a bit of wine I think I went a bit crazy on the brandies I look terrible today LOL thank you for your support

Valerie01
Valerie01
in reply to Moolies

Yes well we have all done it lol at the time it might make you feal better but our problems are still there when the bottles are empty I have c.o

P.d and my husband is disabled and he has cancer just waiting for his operation hopefully next month but there is times when I get so low you think your on your own but you carnt this group gives you hope support and someone to talk with about what's going on x

You’re not alone. Lung disease is awful.it doesn’t get the same recognition as cancer,even though it has a lasting impact on your life.give yourself a hug.

Moolies
Moolies
in reply to Oshgosh

Thank You so much I totally agree with you everybody thinks I’m a picture of health LOL

Yes it is quite scary - You need to join a Tai Chi group, your husband can join too as it's not just for people who have a breathing problem. Also the doctor can offer you Pulmonary Rehab an exersise course for people who have breathing problems. Relax and take control - good luck

Please try not to feel alone. It’s a horrible feeling, i know. Some people just don’t understand, but friends on here understand and will support you.

Try stay positive and always post on here whenever you need to.

I wish you the best, take care, i hope things improve soon.

Moolies
Moolies
in reply to Collie4

Thanks this site is very good What is being so supportivexx

Think we all get scared I have emphysema also my family don’t understand what I go through wish you luck

Moolies
Moolies
in reply to Shortlungs

Thanks a million❤️

Hi Moolies,

I expect your partner, in his own way, is trying to see the less negative side of your health issues - 'mild to moderate' instead of 'severe' which some folks have. It is a very individual experience and you are not alone. We are all here to support you. Try not to look into the future too much. When you can, do things that keep you focused on the present moment - whatever appeals to you and when you are ready. Suggestions: listen to inspiring music - you could even sing along to it. Get out in the garden, if you have one, and potter a bit. Take a short walk in a leafy street or park. Writing your feelings down can help too - try to breathe evenly and calmly - relax your shoulders - you are NOT carrying this burden alone - we are here! xxx

Hi Moolies and and very warm welcome to you.

I am very sad to hear not only of your diagnosis but also the situation with your partner.

You have had some good advice and I agree with Littlepom that it appears you have been diagnosed with bronciectasis amongst your other conditiions. I too have lived with this condition all my life.

With regard to bronchiectasis you really must check your consultant (online) has a special interest in bronchiectasis. They will also be very up to speed with copd and other respiratory conditions.

It is your first priority to not only make sure you get the right medical help but that you learn to help yourself with learning about lung clearance, which your consultant should arrange.

Once you come to terms with and feel more in control of your conditions than they are of you, then it will be time to re-assess your personal life.

I imagine you are there for your partner through his problems. If his behavour is a one off - he hears mild and thinks all is well and can’t understand the implications. However if this behavour is permanent and you are being undermined and there is a lack of respect and support, then perhaps you need to re-assess if this situation is detrimental to your general health and quality of life. You deserve to be treated well.

We are here for you Moolies and all us ‘lungies get it.’

Love cx

Moolies
Moolies
in reply to cofdrop-UK

Thanks so much❤️

I hope you and he are feeling a little better today. There are several ways to view his reactions but there is no doubt they are hurtful and unsupportive. It sounds to me as if he is very frightened of losing you and is unable to express himself. I don't know either of you but my inclination is that he is very scared and doesn't want to acknowledge the situation. It's really not good for you but it's looks like an extreme version of pretending that nothing is wrong. If that's the case then he's likely to respond badly after any medical appointment that you find upsetting. I hope you have a good friend or family member who can provide the support that he's not well enough to give you. Look after yourself.

Dear Moolies:

Whenever I feel hopeless, I change my perspective. It's not easy to do but sometimes when I force myself to look at a situation from another vantage point, or through someone else's eyes, I see that things are really not that bad and could be a lot worse. I feel that your partner was doing the best they could under the circumstances and with what he/she has to work with in terms of their own struggles. And, don't blame yourself either, you do have a right to feel upset because adjusting to a "new normal" is change and change is rarely easy. Hang in there, dig down deep, and find joy in the small things, like a glass of champagne! Wishing you all the best!

Thanks xxx

He is frightened and has retreated from a situation he couldnt cope with, you have to look after yourself. You are active that is good . Now keep active, and meeting people. Dont dwell on it . It is a rotten thing but you can beat it mentally. Read what breathe right has written and find things you can enjoy . Everyone here is thinking of you and wishing you well . If you read these posts regularly you will feel so much better. That was my experience when i found this website.

All the best.

Moolies
Moolies
in reply to Jaybird19

Thanks great people on here xxx

Can I ask how old are you

Moolies
Moolies
in reply to Shortlungs

Iam 55 years young😫😀

I am 59 got diagnosed at 55 with emphysema

Moolies
Moolies
in reply to Shortlungs

Any other lung disease?

Shortlungs
Shortlungs
in reply to Moolies

Bit of scarring from radiotherapy from breast cancer

Never alone we are all here to try and ease your anxiety. 🐞

There are many of us who have positive thoughts relating to a variety of lung problems and often finding out is helpful on the journey of living with those problems. There should be plenty of support out there but unfortunately you have to ask. your latest result may well be Bronchiectasis and many on this site suffer with this. One thing I do know is that you need to be positive in living with these problems. Its a shame your partner is dismissive as mild and moderate doesn't mean anything when you have a flare up and need antibiotics. Look for the help out there and pulmonary rehab at the hospital is a good start. Take care.

Moolies
Moolies
in reply to ssafa

Thanks 🙏

I feel so sorry for you Moolies, I'm reminded of the Serenity prayer and I hope it helps you... roughly repeated it goes like this, "God grant me the serenity to accept the things I cannot change and the courage to change the things I can." Those words are so piercing, beautiful and need much thinking about. You do need to change things in your life but what those things are can only come from you and perhaps a good counsellor/friend... Go for it, I know you can do it.

Moolies
Moolies
in reply to pecede

Thanks 🙏

Sometime people’s reaction can be misinterpreted, have you ever considered the possibility that he is angry with you and your condition because he is frightened that he may be left to cope alone with no one to look after him should you pass over? Selfish as it might be. Good luck from Ireland and I am a fellow sufferer with Emphysema/COPD. Too many ciggies and too many birthdays I suppose didn’t help!! xx

Moolies
Moolies
in reply to oulpete

Thank you for your reply I just want to do my best to carry on normally the doctor told me that because I have stopped smoking a few years ago this is a very good thing for the disease I’m not too sure as I have not read so much literature wishing you well and thanking you for your support

Drama queen??????

Your partner isn't the right person for you mate.

Partnerships are about supporting and loving each other right????.

Personally i would never walk away from some one who needs me.

I have severe emphysema and every single breath i take is HARD but i'm still able to support people i love as they support and care for me.

Your deserve better than this mate. God knows it hard for everyone LIVING with this crappy disease. Do i understand your parners side of things no i don't. Love and support is all that matters. The utter devastation you feel when your told you have c.o.p.d is hard to get over without people who (supposedly love you) having a strop. Time to walk away mate your partner clearly has his own problems and isn't dealing with them and making you feel GUILTY BECAUSE YOUR ILL is a selfish thing to do. I'm angry for you my friend. Remember your never alone mate some one us always ready to listen and care. Breath easy my friend.x

Moolies
Moolies
in reply to Tazzywazzy

Thanks Today he has made his peace with me and has apologised I don’t think he’s very good at coping he had a very bad tragedy a year ago regarding his sister and I think he has many issues

Echoblue
Echoblue
in reply to Moolies

I am so glad you have made peace with each other. Reducing dramas will be good for the health & well-being of both of you.

Long may the peace continue 👍🏻👏🏻 x

Moolies
Moolies
in reply to Echoblue

Thanks sweetie ❤️

Sorry to hear your news Moolies

Was it bronchiectasis by any chance?

Your partner seems to have issues and sometimes people who have these haven't got the reserves or knowledge how to help others. But as you can see, this forum makes you see that there are many people who understand how scary these lung issues are. I don't think people who have experienced it realise how much it impacts us.

Wine feels good at the time but acts as a depressant the next day so perhaps it's better to find some more positive distraction - e.g. if you have some spare cash, how about an online course that you always wanted to do? or real class? - I can't believe how much Spanish drama I can watch and understand on Netflix after only 2 years lessons once a week ! Or something else, so that you can think to yourself " yes I have a lung disease but look what else I can do or have done since getting this".

All here know what you're going through.

Moolies
Moolies
in reply to Response

Thanks so much❤️

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