Upsetting advice: I have been talking... - Lung Conditions C...

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Upsetting advice

Vonnie50 profile image
98 Replies

I have been talking to a guy on here who has me rather upset and worried saying I should give up work as to much, also soon if I do have Emphysema (which I do) I won’t be able to cross the road. I am new to all this and got me in a state to say the least I am stage 1 so far x

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Vonnie50 profile image
Vonnie50
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98 Replies
sassy59 profile image
sassy59

Please don’t be upset Vonnie. You have many good years ahead of you.

Whoever said that isn’t in a great place at the moment sadly.

Take care xxxx

Vonnie50 profile image
Vonnie50 in reply to sassy59

Thank you so much appreciated x

stone-UK profile image
stone-UK

Hi

It’s not appropriate to name and shame, contact one of the moderates by PM

As far as the rest goes, I am stage four Emphysema and still cross the road, bit of shopping slowly, lots of driving.

At stage one you wil still be considered for the net ball team. It will be a very long time before you will be unable to cross the road, and unlikely to be due to Emphysema.

Vonnie50 profile image
Vonnie50 in reply to stone-UK

Sorry did not now not to mention. And thank you as usual. How are you today ?

Damon1864 profile image
Damon1864Volunteer in reply to Vonnie50

Don't worry Bonnie, you have many good years ahead of you. Good lifestyle, healthy eating and exercise will work wonders. There are lots of us on here who can vouch for that, just take things at your own pace and try not to worry.xxx😊 Bernadette

Vonnie50 profile image
Vonnie50 in reply to Damon1864

Thank you xxx

stone-UK profile image
stone-UK in reply to Vonnie50

Hi

Doing fine, upto now.😀😀😀

Vonnie50 profile image
Vonnie50 in reply to stone-UK

And we all need you so keep it up x

2greys profile image
2greys

As stone-UK has said you have no worries with basketball or working, or anything especially at stage 1.

At the moment I am stage 3 bordering stage 4 and still working full-time. In fact I am in the middle of radiotherapy treatment for lung cancer as well and have worked for 6 hours today. Next week I would hope to be getting back to my normal 48 hr week (except it's bank holiday Monday). Be assured you will have no problems with Emphysema for many, many years, perhaps never even.

Vonnie50 profile image
Vonnie50 in reply to 2greys

Sorry to hear of your troubles but you sound like a warrior. So proud of you. Keep up the great work and thank you ⭐️

david101 profile image
david101 in reply to 2greys

Wow - Much respect. Wish you all the very best.

Dubba61 profile image
Dubba61 in reply to 2greys

I really admire you 2greys. You dong wonderfully well. 👍😊✌️

skischool profile image
skischool

Vonnie,you have been diagnosed so early that at stage 1 all you need do is follow a relatively healthy lifestyle,that of course means giving up smoking if you do as smoking is the most likely thing to progress what at the moment is a very mild lung condition and try to avoid other smokers and similar pollutants but not to the extent that it rules your life and limits your social interaction,a good healthy diet appropriate to all people and plenty of exercise and you should live to a fair old age(and i mean very old)with no problem at all,i would even go as far as saying that supplements are not really going to enhance your life that much more in my opinion,but i may be shot down in flames on that one lol.

i have very severe Emphysema but apart from not running upstairs in leaps and bounds i live a fairly normal life all be it with supplementary o2 when i need it to keep the rest of my organs from damage.So young lady work.live life to the full,party and dance the night away if you wish,you can and will be here for a long time to come.

Sorry i forgot to tell you that severe Emphysema makes you waffle and ramble on far to long so i will up and leave you now you have fallen asleep...............best wishes Ski's and a Scruffy cat without copd xx

Vonnie50 profile image
Vonnie50 in reply to skischool

Ski’s you are amazing I love that you have taken time out to write this for me. It is like you know me I spend my time worrying no social life to speak off and I have two grown up children and a granddaughter but no other family at all. My nana brought me up but she passed away in 2003 (still miss her). Promised myself I will go on a holiday this year and try to live for a change. Say hi to Scruffy for me and Big kiss

skischool profile image
skischool in reply to Vonnie50

Vonnie.don't let life pass you by,go out and socialise,make new friends,enjoy life,you are young and have the rest of a very long life to look forward to.one of the perils of taking on a badge like copd is that you can make yourself very much a victim of your own condition by googling and worrying and letting it dictate your life so don't wear that badge at the moment,you don't need it,you are a normal person so go forth and enjoy life...............Ski's x

Vonnie50 profile image
Vonnie50 in reply to skischool

Thank you I am going to try much harder and your right I always google everything and get worked up over it. Stay your lovely self thank you again hun xxx

Pantani profile image
Pantani

Whoever you've been talking too is totally wrong. At stage on you can delay progression by exercise, healthy eating and most importantly a positive attitude.

Vonnie50 profile image
Vonnie50 in reply to Pantani

Really appreciate your reply so so much ⭐️

in reply to Vonnie50

So happy you are here Vonnie, and getting truthful advice. Have a great life. XXXX

Vonnie50 profile image
Vonnie50 in reply to

Thank you xx

hypercat54 profile image
hypercat54

Maybe the person misunderstood what you said? With stage 1 you are at the same stage as me and I intend to live forever :)

I have been mild since my diagnosis 9 years ago and am still mild fortunately despite only packing in smoking last year. Most people these days die with copd rather than from it so relax, keep working and enjoy your grandchildren, and look forward to your telegram from the Queen! x

Vonnie50 profile image
Vonnie50 in reply to hypercat54

Do you have any tips on staying mild ?

hypercat54 profile image
hypercat54 in reply to Vonnie50

Well not smoking, exercising and having a healthy lifestyle all helps. I must admit though I don't have a very healthy lifestyle so I guess I am lucky.

Oh and make sure you take your lungs very seriously. If you think something is wrong seek treatment straight away to avoid further damaging your lungs. Even if you are not sure it's better to be safe than sorry. I do that! x

Vonnie50 profile image
Vonnie50 in reply to hypercat54

Thank you xx

I'm sure that your condition can easily be controlled when they give you the relevant treatment and stay off google as some of the advice on there is rubbish!

Carry on living your life the way you did before you were diagnosed.

Good luck!

Vonnie50 profile image
Vonnie50 in reply to

Thank you very much x

Vonnie50 profile image
Vonnie50

9 years you stayed mild brilliant proud of you how did you do it ? You do anything special? I will try too enjoy things more notvworry myself sick xxx

Symes profile image
Symes

Hey Vonnie,

Whoever told you that, don’t listen to them!

My dad has emphysema (not sure what stage) but he’s still quite active. He loves playing golf. He looks after my sisters 2-year old daughter from time to time, which as you can imagine keeps him quite busy! And since retiring my dad has become a bit of a demon in the kitchen - fancies himself as the next Gordon Ramsay or something I think. We keep telling him he should apply for Masterchef!! 😂

If you feel you are able to carry on working, then carry on working. Do what you feel is right for you. Don’t listen to anyone else. You’ll be crossing that road for many years yet.

Good luck xxxx

Vonnie50 profile image
Vonnie50 in reply to Symes

Thank you so much x

Vonnie50 profile image
Vonnie50 in reply to Vonnie50

He had messaged me a hour ago saying you will progress why do people have to be like that 😪

Symes profile image
Symes in reply to Vonnie50

He’s obviously a short-sighted person, thinking he’s trying to help, not realising he really isn’t.

Please don’t listen to him Vonnie. And speak to @mrsmummy one of the admins here, asking her what to do about him.

((Hugs)) xxx

Vonnie50 profile image
Vonnie50 in reply to Symes

Thank you I will

Bella395 profile image
Bella395

Vonnie50 - you don't mention whether you are a smoker but if you are, the first thing to do is stop asap. This is really, really important. You won't feel better immediately but in a few months you will notice the difference. Get plenty of exercise - it will lift your spirits. Do not give up work unless you absolutely have to. Get as much information as possible about staying healthy and most of all - be positive. Good luck.

Vonnie50 profile image
Vonnie50 in reply to Bella395

No stopped 4 years ago. Trying gym last 5 weeks too. Thank you I will stay as long as possible at work x

B0xermad profile image
B0xermad

Hi vonnie50 4 yrs ago I was told to give up work at 54 due to copd bronchiectasis and asthma it broke my heart as I loved the job and still cannot pop in to see my colleagues even now without being upset. I do feel it was too soon but have accepted it now.please only give up when you feel it's time for you and not anyone else's decision. Good luck

Vonnie50 profile image
Vonnie50 in reply to B0xermad

Thank you for that hun. I bet they miss you too x

Symes profile image
Symes in reply to B0xermad

I know that feeling B0xermad. In 2014 I quit my job at 38 for the same reasons - Asthma, COPD and Bronchiectasis. I was in a call centre and just could not talk on the phone for hours at a time without a proper break. I get breathless just talking on the phone for a few minutes at a time, never mind the hours required with customers between breaks.

I was on the sick for a year before I quit, every time I went in for my Well Being meeting, the management would ask me if there was anything they could do to help. I said yes. Please find me an admin job, off the phones. I begged them to let me go to the back office. But they wouldn’t, or couldn’t. So after a year, and realising I wasn’t going to get any better, amongst other reasons, I quit.

I still miss some of the people there, but I moved away so only really keep in touch through Facebook now.

I got married at the end of 2014, and I’m now my wife’s carer. I try and keep busy in between things, with volunteer bits for Bethany and others at the BLF, as well as my local Labour group.

But yes, Vonnie. Only give up work when you feel the time is right. Keep going for as long as you feel able.

donut43 profile image
donut43

Don't take it to heart. You are still able to do a lot more . You do as you feel not what others may think.

Dan

panda22 profile image
panda22

Ignore what he says. He's not a doctor and doesn't know what he is talking about

purdeyspringer profile image
purdeyspringer

I have Emphysema, stage 4, please, please ignore whoever is saying these things, I am on three inhalers, I go abroad, just come back from walking around Venice, yes I do get very breathless, I stop take my inhaler, have a coffee, rest and I'm off again. You can do whatever you want, if you WANT to, just speak to you respiratory nurse at your doctor's (if you have one), just learn how to breath, a deep breath in through the nose, hold a few seconds, and long breath out, this will help you, just concentrate on your breathing when you get breathless, you will soon realise what you can and can't do. Good luck, always here if you need any help. x

Vonnie50 profile image
Vonnie50 in reply to purdeyspringer

Thank you you are wonderful

Linnie13 profile image
Linnie13

Listen to your body , if you feel well keep doing anything you like, keep positive xx

Christina1941 profile image
Christina1941

Hi Vonnie50, it's nice to meet you. Please ignore what that very unkind person told you, it's rubbish. You have been diagnosed very early and as long as you keep moving, walking, swimming, take the stairs instead of he lift, eat a sensible diet and get a decent nights sleep, take whatever meds have been prescribed, and all that should slow down the progression of this disease. As for working, well you should carry on for as long as you are able, because it is one of the best things you can do, keeps your body and mind active, and please stop worrying all that will do is make you anxious, which in turn will worry you, a vicious circle that you don't need. I am at end stage, I am 76 and have absolutely no intention of going anywhere any time soon.

So live your life, love, dance and smell the roses. Take care and breath easy xx

PS stay away from Google 😉

purdeyspringer profile image
purdeyspringer in reply to Christina1941

sending best wishes and I admire you for being so positive, as I am, I know what you are going through my dear dad, two brothers had Emphysema so I know how you feel. I agree with everything you have said. Take care.

Christina1941 profile image
Christina1941 in reply to purdeyspringer

Thank you purdeyspringer, that's very kind of you xx

Vonnie50 profile image
Vonnie50 in reply to Christina1941

What a lovely person and great reply appreciated you are a star x

Christina1941 profile image
Christina1941 in reply to Vonnie50

I just hope it helps you put your mind at ease xx

Tricity125 profile image
Tricity125

All I said working with dust feather.s. Not good. And that t is tough. PJ

garibaldon profile image
garibaldon

Had it 40 years and at 80im still active

Vonnie50 profile image
Vonnie50 in reply to garibaldon

Brilliant to here xxxx

garibaldon profile image
garibaldon in reply to Vonnie50

You’ll have good days and bad days in my experience. Stay positive, medical science

is advavancing at a rate of knots

Vonnie50 profile image
Vonnie50 in reply to garibaldon

Thank you hope they hurry x

B0xermad profile image
B0xermad in reply to garibaldon

Amazing

chrisb52 profile image
chrisb52

I was diagnosed with emphysema 21 years ago by the time the diagnoses was made I was already Stage 2. I was a commercial electrical foreman and continued working in my trade for almost 15 years. I took disability and went to school for construction management. I still work and have been an estimator for 10 years now. I'm a solid stage 4 now and can still cross the street. You need to do as much as you can as long as you can. I know this disease will kill me someday but I plan on fighting it to my last breath.

Vonnie50 profile image
Vonnie50 in reply to chrisb52

Well said glad your a fighter x

B0xermad profile image
B0xermad in reply to chrisb52

Well said x

CSimms452 profile image
CSimms452

Hi Vonnie50, I have never heard of this either. With the better resolutions from the CT scans they can see a lot more detail. So asume it is that. If you don't hear anymore about it ask.! Phone your specialist receptiinist/ in charge and ask for an explaination. 😊 May put your mind at rest xx

Vonnie50 profile image
Vonnie50 in reply to CSimms452

Never heard of what sorry ??

meagan123 profile image
meagan123

HI Vonnie50

I am 64 years old and I think I am at stage 4, but refuse to have a test because knowing will not help me. I still work full time and and not thinking of retiring in the near future, it gives me a reason to get out of bed each day and get dressed also I enjoy the company at work. This thing will only get you if you let it. Stay positive is the answer. I also manage 3 miles on the treadmill 2 to 3 evenings a week.

Hope this helps

Anne

Vonnie50 profile image
Vonnie50 in reply to meagan123

Anne you are inspirational thank you and keep up the good work x have you had it long?

Stumpy55 profile image
Stumpy55

Hello Vonnie, sorry to hear you have been upset and hope you can rise above it. You are only stage 1 copd and that is very mild, which means you can cross the road both sides and basically carry on as normal providing you take your doctors advice . You have no need to panic. Just enjoy your life Vonnie and take one step at a time. 🌹😊

Vonnie50 profile image
Vonnie50 in reply to Stumpy55

Stumpy you are fantastic thank you

Stumpy55 profile image
Stumpy55 in reply to Vonnie50

Ah yes I know ha!ha! I hope your mind is more at rest now Vonnie. X😊

Vonnie50 profile image
Vonnie50 in reply to Stumpy55

a little yes x

Vonnie50 profile image
Vonnie50

Blimey really interesting thank you

katieoxo60 profile image
katieoxo60

Well Vonnie as you can see we are not all grim reapers, i have had COPD for nine years diagnosed it is still in the same stage and under control with inhalers. Take care and try to avoid infections and you will have a long life , as for the crossing the road we all still manage. Keep active, enjoy each day and take things as they come. I recall being told I had arthritis in my thirties I am still active and retired now but had all these future visions of being a cripple with a walking stick. Life is for living enjoy while you can. I am sure when you look back in years to come you will smile :)

Vonnie50 profile image
Vonnie50 in reply to katieoxo60

Thank you Katie and so glad you are still mild. Hopefully I can stop worrying and enjoy life. Thank you for your response it is appreciated xx

katieoxo60 profile image
katieoxo60 in reply to Vonnie50

You are very welcome xx

Vonnie50 profile image
Vonnie50 in reply to katieoxo60

Keep in touch x

katieoxo60 profile image
katieoxo60 in reply to Vonnie50

I will, except for holidays I usually sign in most days and have been with BLF for quite a long time as a supporter. xx

Vonnie50 profile image
Vonnie50 in reply to katieoxo60

Well done x

katieoxo60 profile image
katieoxo60 in reply to Vonnie50

Been having a very fraught morning, only getting half the jobs done I need to. sliced my finger with a screwdriver trying to instal my new moniter for PC. It was worth the trouble though this screen is excellent, It is a Phillips 19" Had my old one for years it finally gave up and would not work. Hope you are having a better day than myself. Have a meeting tomorrow must get minutes and agenda ready. Speak again soon xx

Vonnie50 profile image
Vonnie50 in reply to katieoxo60

Oh Hun please be careful glad you got it done eventually. I fell up the stairs got a massive bruise lol. But Sun is shining and it is beautiful speak soon I hope x

katieoxo60 profile image
katieoxo60 in reply to Vonnie50

Sounds like your in the wars like me, take care and thank goodness it was only a bruise. It has been a gorgeous day for sunshine here today. Enjoy the sun while its here :) x

Vonnie50 profile image
Vonnie50 in reply to katieoxo60

Thank you and take good care x

Vonnie50 profile image
Vonnie50 in reply to katieoxo60

Thanks Katie x

Ramy22 profile image
Ramy22

Don’t worry.... this person is not your doctor and so hasn’t a clue! Keep doing what you do! X

Vonnie50 profile image
Vonnie50 in reply to Ramy22

Thank you x

Shazza59 profile image
Shazza59

Hi Vonnie, like you I have been worrying incessantly since I got my diagnosis but reading the replies you have got on this thread is so uplifting, the people here are worth their weight in gold and really give us newbies hope and determination to try to keep things at bay.

Hope you are feeling a bit more positive now as I know first hand how the mixed emotions can play in your mind.

Chin up and let’s try to live as full a life as we can,

Sharon xx 🌞

Vonnie50 profile image
Vonnie50 in reply to Shazza59

Thank you Sharon very much keep in touch please x

Shazza59 profile image
Shazza59 in reply to Vonnie50

I will of course Vonnie, we need all the help and support we can get x

Vonnie50 profile image
Vonnie50 in reply to Shazza59

Thank you very much x bit short of breath today makes me panic

Shazza59 profile image
Shazza59

Funnily enough did not feel too great today either, had headache and felt breathing shallower than normal. Hoping to get a good sleep and hopefully will feel more ‘normal’ tomorrow 😊

Vonnie50 profile image
Vonnie50 in reply to Shazza59

I hope we both do Hun x I was diagnosed in Feb think you are recent too x

Shazza59 profile image
Shazza59 in reply to Vonnie50

Yes, 26 February was my date (embedded in my mind!!). Sleep well and hopefully the positivity others have will run off on us soon x

Shazza59 profile image
Shazza59 in reply to Vonnie50

Should have read ‘rub’ off on us soon haha!

Vonnie50 profile image
Vonnie50 in reply to Shazza59

True sleep well hun x

I don’t have the other lung illnesses and I’m between 1-3 of stages of Lung Cancer.

I’m blessed that it was found early and it saved my life forever however long I live.

I spent all of 2017 recouperating from surgery, Chemo and Radiation.

I have other issues due to the Cancer that I deal with everyday. It’s given me a case of terrible Neuropathy in my legs and arms. It also left me with a very unusual burning in my mouth, nose and eyes.

There isn’t a Doctor out there that knows what that is. Apparently my those things have not gone away even though I’m Cancer free. Either I have to live and deal with these things or maybe in another year it will go away on its own.

Since you are at the beginning of the road, I wish you lots of good luck!

Vonnie50 profile image
Vonnie50 in reply to

You have been amazing very brave and I am glad you are recovering. I hope your other issues are solved very very soon

Vonnie50 profile image
Vonnie50 in reply to Vonnie50

Not sure Edydede this message was for me ?

CSimms452 profile image
CSimms452

My husband had no choice, the hospital told him he would not be able to work. Keep going as long as you can. Many people don't know that they have COPD.

Vonnie50 profile image
Vonnie50 in reply to CSimms452

I hear this a lot that many don’t know they have it . Sad to hear he had too leave x

Sandyeggo profile image
Sandyeggo

My advice to you is take any an everything on this site for what it’s worth. Opinions. So far haven’t met anyone named Doctor. Most people genuinely mean no harm an only have your best interest at heart. And then there are a few “grumpy old men” just like my 88 y/old father who care nothing about anyone but themselves and take no one else’s feelings into consideration. You, in the end, are the one in charge of your life and decisions made in it. So on that all the best to you- just breath😜

Vonnie50 profile image
Vonnie50 in reply to Sandyeggo

Sorry to here about your father Hun nothing stranger than folk they say. I am quite a sensitive soul and appreciate your message very much thank you x

Annie31 profile image
Annie31

I think some people think they're being helpful when they're not! They really do not realize how the written word sometimes comes across any more than someone blurting out something without thinking how it is going to sound. I understand how you feel as I have read comments on the site that sometimes makes me to Just want to throw the towel in!!😢 Then I come to realise that perhaps this site is the only place they have to go to, to be heard, to be honest and shout to the world, here I am, my world stinks and I'm shut in it! It's scary when you read of someone else's experience whilst you are trying to sort your own life out, but that is what a forum is for. It has to be there for everyone to share their experiences and opinions good or bad or there's no point in it. Your experience has not been nice and I sympathize wholeheartedly xx Ann

Vonnie50 profile image
Vonnie50 in reply to Annie31

Hi Annie thank you for your reply. I truly understand where you are coming from. Shame that some of us have no one to talk to in this world. God bless and keep well x

Kristicats profile image
Kristicats

I think you are very lucky to be diagnosed at stage 1. Many people once diagnosed stay at the same level for many many years (if they keep moving , stay positive and take the doctors advise ) I have managed to increase my levels doing just that. Take care of you, keep away from peeps with colds and chest infections, air fresheners and fires would be my advise.

Vonnie50 profile image
Vonnie50 in reply to Kristicats

Thank you very much x

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