Friend thinks I am dying : Just told... - British Lung Foun...

British Lung Foundation
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Friend thinks I am dying

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Just told friend I have moderate copd and she just said so does that mean you dying oh my god

73 Replies
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Blackbird6

Hi Emily hope your good my reply to your friend would have been to blue to post on here lol

From the minute we are born we start to die it's a fact.

It's what we do in between that matters life is a school of hard knocks and we take them on the chin and learn from it .

Pucker up and smile...your friend is obviously a good friend but knows nothing of your condition and by the sounds of it dosent understand how one reply can sometimes sting a bit.

It's how your coping that matters and I hope your becoming more used to accepting it now early days still

Take care of you 🌸

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in reply to Blackbird6

Well I was in fighting mode last couple of days was going to work out on my excercise bike she reminded me of a dear friend who died I said she never stopped smoking ....which I was more educated as today felt quite well

I know she means well but has set me back 3 days

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Hidden
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in reply to Hidden

I don’t think that she is any kind of friend. Ignorant and cruel

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Blackbird6
Blackbird6
in reply to Hidden

Ignore the setback ....fast forward 3 days use the exercise bike today and stay focused your doing just fine 😊 some people knee jerk react cause they are uneducated xx

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corriena

Well yes, but not from copd and not for quite a few years yet. Chances are it will be old age that gets you not copd. Iv been sever copd for about 25 years and im still going strongish. As long as you do as your told not smoking ect you can live a good life with copd. Unfortunately people still think its a death sentence but treatment has come a long way in resent years and that is no longer the case. People just need educating.

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in reply to corriena

I was having a good day but as not long diagnosed she has set me back if honest

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Damon1864
Damon1864Volunteer

Hi Emily you have a good friend there, but bless she doesn't quite understand this disease. Explain how it will affect you and what you can do to slow it's progression down, it sounds like she will give you lots of support and help bless her. You are so lucky to have such s good friend. Please keep posting and take care of yourself. Have a lovely day.😊 Bernadette xx

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in reply to Damon1864

My trouble is I am also uneducated so lovely as she is she has set me back..o was actually having a good day

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O2Trees

I wonder why she said this Emily. Did you give her the impression that this could happen? Otherwise, unless she is an extremely tactless and insensitive person, she would surely not be likely to react in this way as she would realise how potentially upsetting it would be.

I understand you are torn up about this diagnosis. So much so that it seems you are having great difficulty taking in the brilliant advice and support you had on your other post. I would advise telling your GP/consultant just how anxious you are. Shock over a new diagnosis is normal and it's very common but so too is health anxiety and I worry you are damaging yourself with this level of terror - far more than the condition itself.

Im sure Im repeating what others have said but get a referral to pulmonary rehabilitation from your GP - a course of exercises, aerobic and resistance, tailored for people with copd and other lung conditions. The course also includes education about the condition and how best to manage it.

I'd strongly advise too, if no-one else has, that you telephone the BLF helpline (03000 030 555 office hours) and speak to one of their friendly and knowledgeable nurses. They will be very used to people like you who are terrified for the future. They will also be able to advise what questions to ask at your appointment. If you start doing some practical things you should begin to feel more in control. Take good care of yourself :)

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in reply to O2Trees

No because I didn't think ran down my steps slightly breathless...nothing I thought major ...she made comment about me being unfit...know her for years so felt safe telling her...don't know if it was her being in shock

Was planning on using my excercise bike never used

Pulmonary rehab 12th told daughter once i attend we can work out together

Just feel a bit flat and back to being a bit scared...didn't expect that reaction

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O2Trees
O2Trees
in reply to Hidden

Right, I understand now - sorry to put down your friend. I guess she was frightened for you and people often find that difficult to deal with. So glad you have PR - well done getting that sorted. Breathlessness itself isnt a danger but it can be alarming for other people who dont understand.

Something you should know is that when you exercise it's actually good for your fitness levels to get breathless - though not so you think you're going to pass out obviously. When your muscles arent used enough they decondition - get weak - and they cant use oxygen efficiently.

Dont worry about not knowing everything now - this condition is a big learning curve and in a while you'll know much more and feel more confident. :)

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in reply to O2Trees

My terror was subsiding and already I feel made progress

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O2Trees
O2Trees
in reply to Hidden

Brilliant - well done you! :) :)

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Hidden
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in reply to O2Trees

Will excercise help with breathing over time or not

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O2Trees
O2Trees
in reply to Hidden

Yes, definitely. It will make your muscles stronger and strong muscles are able to use your oxygen more efficiently. And that means it's less effort for you to walk around. And conversely, the less you exercise, the harder it will be, so there's the incentive to keep on doing it!

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in reply to O2Trees

Also spoke to BLS nurse yesterday and that was to ask about something my GP said so I am listening honest

Even purchased some stuff suggested from others waiting for delivery

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hypercat54

Oh dear, Welcome to the club of family/friends who don't understand the disease!. You can try educating her? x

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Hidden
Hidden

There are people on this site who have a much more severe diagnosis to cope with than you.

They live a good life and just get on with it. Many of them are the dear souls who are trying to help you now.

You are going to think that I am very hard but it has to be said.

You have your diagnosis.

You are the same person you were on the day before you had the name.

You are not going to die any day soon from this condition

Now you need to stop panicking

Buck yourself up and

Get on with living your life whilst following the advice on the best things to do that you are being offered on here.

This is said with love because everybody should be living their life to the full, not paralysed with fear of things that won’t come to pass.xx

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in reply to Hidden

That's what I am trying to do and I do need harshness guess once I understand more the better I will be able to respond that's all

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in reply to Hidden

You'll get there! Look how much support you have.

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in reply to Hidden

On a positive note used my bike never used for 10 minutes....may use again later want to get my breathing under control ....it has not been that bad today...Thank you

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in reply to Hidden

Go for it girl. You’ll be helping another newbie soon! xx

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in reply to Hidden

I hope so

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challny
challny
in reply to Hidden

I am 66 and was diagnosed with COPD 2 years ago. My sisters had told me that my father also had COPD. I talked to him shortly before he died last spring, and he told me he had COPD. He was 92 when he died.

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in reply to challny

I get now it's not a death sentence...still worried that it is a progressive disease......just want to slow the progress down so I can continue to work look after dad ....the fear of not begin able to is still there.

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CLARAmay
CLARAmay
in reply to Hidden

Hi Emily61 how old are you? How long did you smoke for? You have nothing to worry about as long as your looking after you. I found eating a lot of vegetables and exerciseing and taking my medication helps a lot, I walk every day, I’m not perfect but all I can do is try.

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in reply to CLARAmay

I am 57 ...smoked for over 30 + years still mobile I get it's not a death sentence now...that is progress...I am if honest still scared of deterioration I am trying to be positive but that does creep in daily ...just want to slow progression down

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CLARAmay
CLARAmay
in reply to Hidden

Hi Emily, I’m 57 this year in August, smoked for 40 years all good long off the smokes the better I have copd it’s so common now days don’t worry , just keep your vitamins up and keep active and you will be ok.

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skischool

Emily,i have that little lung function left that i think i am officially dead but fortunately i don't have a problem with anxiety and i think that once you overcome yours the world is your oyster and will be for a considerable time to come.you have been given loads of good advice and hints and tips on how not only to control your condition but actually improve it.i know that initially it is a frightening new world for you but don't let it replace the real one.now wishing you the very best for the future and go out there and enjoy life to the full.

Ski's and Scruff's xx

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in reply to skischool

Does excercise help with breathing

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skischool
skischool
in reply to Hidden

Most certainly it does and it is crucial that you maintain it to the best of your ability,you don't have to train to be an athlete but it will certainly help with breathing and also the feeling of well being,it can become too easy to become a couch potato and sit on the sette of decline .go for it girl and you will be surprised what you can accomplish. x

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in reply to skischool

Thank you well will do the bike shall I take blue inhaler first

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skischool
skischool
in reply to Hidden

asthma.org.uk/advice/living...

Have a little read of this,if your Asthma/copd is triggered by exercise have a couple of puffs 15-30 mins before you start otherwise it isn't a prerequisite.

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in reply to skischool

Thank you I go back and read response you are, like everyone on here amazingly strong I feel ridiculous moaning. Did 10 minutes on my bike...never used it before having another go later

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skischool
skischool
in reply to Hidden

Well done Emily, a good start,just build up slowly and don't try to do everything on day 1 and you will feel better both physically and mentally. :) x

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in reply to skischool

Thank you so much x

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peege
peege
in reply to Hidden

Good for you emily61, 10 minutes is a great start. You'll soon build up.

Please try to ignore that silly, thoughtless comment from your 'friend'. Your glass is always half full.

Regarding exercise, there is a great DVD of exercises devised for people with varying degrees of the different lung diseases. It is probably free so have a look in the BLF shop.

Stay positive and train those negative thoughts right out of your brain, it really helps. Just as you influence yourself and others with negative thoughts we can influence ourselves and others with positive thoughts.

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in reply to peege

Do you know you are right tomorrow is never promise my mother always says this.....and than you

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in reply to peege

I have to defend her think she is just scared for me and she too smoked so who knows

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Ergendl
Ergendl
in reply to Hidden

My friends were as relaxed about my diagnosis as I was until they saw the reaction of our priest who is also a hospital chaplain and has seen end cases on the wards. I reassured all that I was making all the right moves not to become like those patients, and would most likely die of something else first.

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in reply to Ergendl

Thank you

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in reply to Ergendl

I am trying to make the right moved suggested here to slow it down just not knowledge enough to know what I am dealing with but I am trying

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CLARAmay
CLARAmay
in reply to skischool

Hi ski school are you on oxagen?

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skischool
skischool
in reply to CLARAmay

Hello CLARAmay,yes i am prescribed ambulatory oxygen at 4 lpm on exertion to compensate for my 22% lung function but i am not on LTOT at the moment.

Ski's x

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Chriskho

Your friend obviously doesn’t know much about copd and how if diagnosed at the mild_ moderate stage people live as long as anyone else if they stop smoking, live life, take prescribed inhalers and don’t just sit around overthinking everything. Yes we can have a bad patch esp in the winter but generally your fitness is up to you Emily?

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in reply to Chriskho

Thank you I was actually ok ish fell the more I know the more I will grow

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in reply to Hidden

Just told copd not what type had x-ray blood test whilst in hospital no other test

Learning disabilities nurse see you are both adult and mental health are you working

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cofdrop-UK

Hi Emily

I think your friend is probably a good friend. This came out of the blue for her and she was obviously shocked and ignorant of the condiition. Have you talked about it with her and explained what it is and how her comments made you feel. Usually best to clear the air with a friend.

Peoeple with cancer have recently been complaining about the unhelpful things people say and many of the comments resunated with me and I am sure all of us: ‘but you look so well’’, ‘isn’t there something they can do’. ‘You’re so brave’ (if I was brave I would put myself forward to protect my counntry or run into a burning fire to save someone). I have no choice but to make the best of and do what I can to keep the status quo.

I’ve had comments all my life. I don’t mind too much from friends because I will take the time to explain, withou going on. Different story when it comes to strangers. When a teenager I was stuggling up a flight of stairs in a shopping centre and a middle aged couple ran up 2 stairs at a time and seemed to think it helpful to tell me to give up the ciggies (never smoked as had this all my life). They felt superior and I felt, as you have on this occasion really sad and down. Not now. Anyone says anything and I lay it on witha trowel to make them think before opeing their silly mouths to anyone else, and it feels good.

Not long ago I went with my sis to a cafe in town. I was in the end throws of an exacerbation and had climed the stairs. My friend was in there with a friend who has bronchiectasis. We had a short chat and I was breathless. My friend told me afterwards that her bronchie friend said ‘well I hope I never get like her”. I could really have been cross with both, but I think the woman, who is posh and was divorced from a doc seemed quite ignorant of her own condition. My friend is not really diplomatic - it’s her way to be honest and not think too deeply but is someone who will be there for you.

I hope you can explain things to your friends. That you care for her but was upset by her remark. She will probably be upset herself that her concern came out to. Be deeply hurtful.

If other people’s comments are not constructive or are negative, disregard them. they may not come from a bad place. Educate them if they matter to you.

You have friends on here who truly understand.

Love cx

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in reply to cofdrop-UK

I feel the more educated I become the better I will be at responding ...I not a fit person anyway thank you and I don't think she was being nasty know her

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cofdrop-UK

I’, sure you are right Emily. I’m glad you still consider her to be the good friend she always has been. I believe it to be a knee jerk reaction which came from shock and concern. Try put it on the back burner (because you know it’s not true) until you can talk it through with her.

Love cx

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Ticks

To be fair before I was diagnosed I didn’t know much about these conditions either. That response was a bit insensitive and I bet your friend regrets responding like that but, hey, we’re all human. Xx

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Chriskho

P.s I think many people now know that Emphysema is under the umbrella term as copd and is now related to as copd. In the past most folk thought of emphysema as a miners disease and many people died with emphysema eventually from the nasty coal dust.

We all now know ( to our cost) that smoking can also cause emphysema but not as destructive or rapid.

And ......treatments have come a long way and it can be slowed right down if caught before the severe stage.

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in reply to Chriskho

I really don't know what type I have as honestly until coming on here...on a positive did 10 minutes on a bike o have never used may try again later actual enjoyed it

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in reply to Chriskho

I didn't actual know until again coming on here that it can be slowed down

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RedSox

Sorry Emily61 but I cannot blame your friend for saying such things . She is innocent of being insensitive because society in all its naivety has conditioned folks into thinking the way she does. She’s not to blame it’s all the other idiots that just don’t do their homework.The people on this forum are the ones who know via experience what the facts are. Listen to these folks and you will live and learn

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in reply to RedSox

Hi don't think she was being horrible we had a friend who passed and had copd ...I know she was just scared for me..I don't blame her..because I felt the same...I never know that the progression can be slowed down..like her when I was told quite insensitivity by my Dr...all I saw was oxygen not being able to work and death by suffocation...I have been on here daily for support since being told...it has been you all the asthma UK nurse BLS nurse the community respiratory nurses who have stop me from having a nervous breakdown....so no I don't blame her ....but do remember I have only had x-ray spirometry test ....don't understand it myself but gaining some sound advise and knowledge here

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Hacienda

Emily I had messaged you on your first Comment. Again, every one here is trying to help & Support you Hun. Just read all the lovely Comments from most of us who are also frightened of Dying, But by God we get on with Life every day by remaining Positive. You are only 57, you are an Adult with many many years in front of you. Do your exercise which is Great, Look for Positives in every thing. Are you living on Oxygen ? Are you Stage 4 Emphysema ? I think not. We are all Different with Different Lung Diseases, we try and Help each other and always welcome " Newbies" like you. You are in our Flock now so please Try and not worry. Go to your GP and ask them about Anxiety. Good Luck for your Future Hun. xxxx

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in reply to Hacienda

Hi I got diagnosis last week over phone by Dr had spirometry test moderate copd is what be said and asthma I am not on oxygen waiting to see consultant don't know what copd I have just know Dr said progressive 62% then 77% after inhaler still not sure

1st consultant appointment 25th but from what j gather on here I am a long way off establishing what type of COPD I have

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les4560

Emily61-sorry your friend said that to you,im the same way scared,scares,scared but once I see the pulmolg. march 5 I will know what to do and I will feel better- hope your day gets better!

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Hidden
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in reply to les4560

Hello you How are you doing has anyone reached out yet ....in the mean time how you feeling

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les4560

no not yet just you -how sweet of you to do that with everything going on with you!

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Hidden
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in reply to les4560

Do what we are in this together .....

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les4560

yes we sure are

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Hidden
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in reply to les4560

How are you doing anyway

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les4560

Handing in there but it is hard,how are you?

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in reply to les4560

Up and down but more up I think so have you been able to talk to anyone about how you are feeling

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les4560

no I haven't I think that is why im so scared and the fact I don't know what stage I am in

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in reply to les4560

Right going to ask people to reach out do you mind it's vital as I would be suicidal if not for people on here

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Eversley
Eversley
in reply to Hidden

I appreciate your fears and worries I joined this group because my dear husband was diagnosed with copd,never smoked, my daughter worried ourselves sick over his diagnosis. Spent so much time looking on goggle etc. Over time he and us have accepted his condition and has improved his lung function tests over the last year through exercise and diet and being on the proper medication. He is a very laid back individual,and I worry a lot more than he does!!! Over time you come to accept it and carry on regardless, life is for living and enjoying our wonderful grandchildren

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Hidden
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in reply to Eversley

Thank you for that

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les4560

oh I don't mind at all,im so glad you are here!

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in reply to les4560

Hi send another post with title people are waiting to support you

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les4560

copd!

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