I AM STILL HERE FOR NOW: i hope some of... - British Lung Foun...

British Lung Foundation
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i hope some of you remember my posts,dont feel like going through everything again.anyway i somehow went to work today i took a puff of the inhaler before i left out of fear.i stayed as calm as i possibly could and my breathing is fine.i have terrible pain in the middle of my chest.i had it when i thought i had this and when the dr the first time told me i didnt have copd the chest pain went away in 3 days. then when he told me i have it it is back and it really hurts.i wish i could get rid of it do you think this is all from anxeity and panic.if i did not have this i would feel fine .anyway i decided to go for a cat scan it was suggested i go i just want to be 100% sure what i have even though the xray said copd .is not something else,it be terrible if i ended it for the wrong reason.i decided for right now to still be around cause it seems that when i am calm i very rarely have any problems breathing.the dr ,a few people on here,the copd hotline told me exercise eat good which i havent been doing cause of severe stress take excellent care of yourself and you can slow this thing down to a crawl and stay where u are at for your life.a gentleman on here told me he has been mild for 10 years now.this if the cat scan confirms the xray its my only hope . if i go down and really start to struggle for every breath i am done.please dont judge me for this its a promise i made to myself as a young man.when quality is gone its time to leave.it maybe selfish but we are all different and i guess i dont have the courage some people have although i have been thru alot of hell.for all the people who have maintained the level they stared with for years please let me know cause it will keep me alive.

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16 Replies

Hey there. Happylondon has pasted some amazing meditations. I highly recommend them. Seeing a professional is very helpful. They deal with our fears all the time. If I can't fix it, I ask the experts. We all have to deal with lots, but there are always others worse off. Hang tough and find good things daily. It really isn't all doom and gloom. Look at the silly pals you have here. It is possible you will live comfortably for decades. Just stay positive and take recommendations. I'm gonna have a ball as long as possible.

So put the music on, you know the stuff you smiled to when you were 12? Play it loud. Then a treat to make your doctor yell. A nice trashy book and some trashy tv. Binge on a good series. Rent some movies of choice. When next you work, bring your co-workers donuts. Don't tell them why...just because...

Look at that sun or moon or cloud today. Inhalers and meds are like brushing teeth; just do it. No big deal. If you have faith in Something, go for it.



Positive thinking is a great help, I know it can be a great struggle to stay positive but believe me it helps. Eat well and exercise, say to yourself I can do this. You may surprise yourself how well you can cope, but please see your GP about your anxiety. It always helps to talk, no one is judging you. As you said we are all different, please keep posting and take care. Love Bernadette 😊 xx

I’m pleased you’re being a little more positive now and would urge you to seek professional help.

It’s good to see your post this morning and please rest assured that nobody on here is judging you. We’re here to support as much as we can. Xxxxx

When my chest hurts I try meditation (methods are described on other postings).

Also I find letting my outward breath 'escape' rather than deliberately breathing out can help. For me it's because air gets caught behind the thickened/scarred tissue in my lungs, so if I push against it it hurts whereas letting air out slowly gradually reduces the pain.

I try to keep a steady pace, rather slower than I'd like, so I can keep going longer. Rushing makes me instantly breathless and brings on the pain.

Keep trying some of the ideas here, work with your medical team, you will find your way. It may not be the life you had but it can still be a good one.

Look on BLF site at some of the personal stories, some of them are amazing.

Keep going, we're on your side xx

I saw your other Comments Hun, and asked our Admin to Help, Stone gave you the Phone Number for the Samaritans USA. Maybe after Reading the comments Yesterday you are in a calmer place, you seem to be This Morning. I hope you get the answers you Need and can take one day at a time. We have all been there to that dark Place and here we can help with Words, That was all I needed to come back to myself. Stay calm, Breathe Deeply and Plan each day.. Love n Hugs to you Hope132. xxxx

So many things I want to say but I don’t have the words to express it, other than to say you are loved. Life is terrifying at times but you don’t have to deal with it alone, I’m still fairly new here myself so I hope it’s not presumptuous of me to say we are here with you.

I think many of us have been to that dark place.....but hang on to hope. Twenty four years later and I am still here.

Treat yourself with loving kindness . Meditation and gentle breathing have helped me through.

Best wishes

Hi like I told you before the progression isn't anywhere near as rapid as you think. You are not going to go to bed one night with 64% lung function and wake up the next day with 34%! It doesn't work like that. If you lead a healthy lifestyle then the progression if any should be slow and you will be able to maintain your fitness levels for many years to come.

However it does seem a waste of a life if you are just going to panic and have anxiety attacks constantly planning your death instead of living it to the full. Put away those thoughts of decline and the decision you have made until you need to think about them again. You certainly don't have to yet nor for many years.

I am one of many on here who have remained stable (or only lost a few points) for a long time so there is no reason why you should suddenly decline to a level of severe in a year or so. x

hope132 in reply to hypercat54

do you mind me asking what a long time is.also i read posts on here the other day that a women fev1 went up with taking care of herself ,exercising,eating right,she said it went considerably up cant remember the exact numbers.i saw a study of people where after 3 years of eating the right foods there fev1 went slightly up.as i said the dr.actually told me i can baseline and stay were i am basically till i die,if i go down a point after many years or 2 points i can cope with that.when i think i can stay the same i am fine my breathing doesnt really bother me and my chest pain is gone and i feel great.but when anxiety and panic set in the chest pain comes back and i think i am having breathing problems and see my dad and my aunt in my head. i cant tell you how relaxed i was last night when you told me your fev1 will take many years to go slightly down or may not even go down.i just completly relaxed a calmness came over me and i said to myself i will be able to do all the things i love for a very long time or maybe till i die.

hypercat54 in reply to hope132

How long is a piece of string? I was diagnosed mild 10 years ago and am still at the same level. This is despite not leading a healthy lifestyle and still smoking until last July. Ergo - I have been lucky and must have some good lung genes as well as bad.

Someone else in exactly the same situation could have progressed to moderate or further in that time. The disease is individual and no one can say to you 'Oh yes you are going to stay at the same level for the next 15 years then suddenly be severe'. It just isn't possible I'm afraid.

What I will say is that leading a healthy lifestyle like you are will stand you in very good stead and maximise your changes of no or little progression. This cannot heal damaged lungs but exercise will ensure that you use oxygen more efficiently than others who are more sedentary.

I suggest you read some of the other posts in here from those who are much worse than we are but whom still have a very good quality of life. You will see there is no reason to give up hope. x

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hypercat54 in reply to Hidden

Who knows? My nurses/doctors either don't know or don't care coz they always insist angrily that it all comes under the copd umbrella. From what I have observed and heard I would guess at chronic bronchitis.

I have been on here a long time and picked up quite a lot of knowledge. Most of what I know I learnt on here and am happy to pass this on in my turn. I am mild or very high moderate so my experiences don't include severe etc. x

Hello hope132 I hope the comments you have received have calmed down your panic. Most on here have COPD and anyone at the stage you are at will tell you the truth ... that if you stay off the cigs, don’t sit around too much and take the inhaler/s you are prescribed you will stay around the same level you are at and deteriorate at the same pace anyone else does that hasn’t got it. The numbers may go up and down a bit according to the weather, colds etc. Often I think the more time you spend alone dwelling on it the more you are likely to feel down and imagining things are worse/relating to other family in the past etc.

I was diagnosed 3 years ago after a bad chest infection. My Fev1 was 56% after a spiro test. I obviously started reading all the c**p on google and became very down/ doomed and sat around wrapping myself in cotton wool wondering how long I’ve got left! My Fev1 went down to mid 40s at one time. Then I found out the ‘reality’ of people with similar numbers to me in this community. This gave me a lift and in short I got off my ass, packed in the coffin sticks. Went back to work 2 days and my numbers have improved gradually . Now my Fev1 is mid 70s! So... I know I’ve not gone mad with exercise or diets but make sure I don’t spend too much time on my own and get thinking negative. As most people of course it will always be on your mind. We cannot get un- diagnosed. The trick is to be positive about it and perhaps see it as a wake up call re the smoking and activity level. I feel the panic attacks may be a factor to address ASAP so you can move on and then feel easier in easing your COPD. You sound pretty fit to me otherwise and in a great position to improve. I’m sure many others on here wished they were at stage 2 ( even 3) because nowadays things can be halted right there if we know about it at that stage and stop the cigs etc.

Sorry if this is blunt. I saw a private clinical psychologist at the time of my diagnosis (yes it really got to me) and the best thing I took away from that was ....Stop taking too much notice of your negative thoughts ( we all have hundreds of them) and look around and see what is ACTUALLY happening . Best wishes hope you continue to tune in.

I suggest you see your doctor as it sounds like you are hyperventilating. I had that many years ago, prior to being diagnosed with emphysema, and it felt like I was having a heart attack. Breathing difficult too.

He told me what the problem was and gave me a script for tranquilizers, but I already felt better after being told what the problem was. Took the tranquilizers for a while and got over it.

So pleased to hear from you again, hope132. Do keep checking in with us. It means a lot for us to be able to walk beside you on this difficult road. Good luck working on your anxiety levels, and well done for realising the effect anxiety is having on you - I'm sure it will make a great difference to you if you get that a bit more under control.

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