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British Lung Foundation
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Upsetting advice

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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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

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Thank you so much appreciated x

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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.

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

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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

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Thank you xxx

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Hi

Doing fine, upto now.😀😀😀

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And we all need you so keep it up x

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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.

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

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

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

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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

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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

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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

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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

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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.

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Really appreciate your reply so so much ⭐️

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

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Thank you xx

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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

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Do you have any tips on staying mild ?

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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

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Thank you xx

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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!

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Thank you very much x

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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

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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

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Thank you so much x

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

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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

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Thank you I will

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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.

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

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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

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

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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.

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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

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

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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

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Thank you you are wonderful

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

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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 😉

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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.

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

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

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

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

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Had it 40 years and at 80im still active

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Brilliant to here xxxx

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

is advavancing at a rate of knots

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Thank you hope they hurry x

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Amazing

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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.

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Well said glad your a fighter x

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Well said x

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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

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Never heard of what sorry ??

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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

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

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Bearing in mind that smoking related damage is there before you quit smoking, Leonard Nimoy ( AKA Spock from Star trek ) packed in smoking at 50 , died at 83 . First lady Bush packed in smoking at 40, died at 92. Ok, both died from copd, but how many ''healthy'' people get to them ages?

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Blimey really interesting thank you

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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. 🌹😊

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Stumpy you are fantastic thank you

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

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a little yes x

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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 :)

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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

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You are very welcome xx

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Keep in touch x

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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

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Thanks Katie x

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Well done x

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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

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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

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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

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Thank you and take good care x

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

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Thank you x

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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 🌞

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Thank you Sharon very much keep in touch please x

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

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

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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 😊

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

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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

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

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True sleep well hun x

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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!

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

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Not sure Edydede this message was for me ?

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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.

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

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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😜

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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

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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

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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

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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.

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Thank you very much x

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