I went for a bronchoscopy and discovered I've got COPD. Smoked heavily due to anxiety from childhood . Now I'm angry, petrified and anxious about the future
Scared, anxious and hopeless - Lung Conditions C...
Scared, anxious and hopeless
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72 Replies
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We can do a lot to help our lungs been sniffing Eucalyptus Oil which the Chest Nurse said has opened my Airways. Was housebound for 3 mths due to severe breathlessness started on the Euclyptus Oil & using the Town Rider twice a week as the bus takes me to the shop i want, pick me up & the drivers take my shopping to my front door. Found out walking with the stores trolly has helped improved my breathing. Try to keep as active as possible do pursed lip breathing when breathless, i had problems eating so have kept a diary & eat 3 times a day, we use 3,000 just breathing with COPD! Use our Reliever Inhaler as often as needed XC
It comes as such a shock doesn't it? There are many members here who will chat to you and reassure you. It is a nasty disease but there are ways of living with it. Stay away from cigarette smoke and other pollutants, try to eat healthily, follow your doctor's advice and get an exercise regime going. Welcome to the site.
in reply to mrsmummy
Thanks. Unfortunately my friends aren't very empathetic. The feeling of isolation just makes me feel worse. Went to the beach in a car yesterday and I felt awful.
mrsmummy in reply to
You won't feel isolated here because there are so many of us. 
in reply to mrsmummy
I'm 43 and single and just feel hopeless
in reply to
I was diagnosed 3months ago stage 3 i stopped smoking the moment i knew. And it has turned my life around ...i walk between 5 and 10 k a day I do tai chi i eat a proper balanced diet of signed up to do my first marathon in 2 weeks..
I'm sorry you feel bad but don't be anxious or scared smile to yourself and pick up your courage to do the above I was you 3 months ago xxccx message me if you want to talk but I'm pretty blunt lol xxx
in reply to
Appreciate the offer but I think bluntness is not what I need right now. Thank you
in reply to
I meant blunt as a jokey way not horrible take care x
in reply to
Thank you. I'm just a bit of a mess at the moment.Angry sad, scared...and all the things I've mentioned before.
in reply to
Don't be any of that it's hard to take on board you haven't said what stage your at etc...dont Google lol this is a brilliant site for us with copd...everyones different ..once you accept it ...it does get easier and you have stopped smoking so that's the hard part out the way ...well done x
in reply to
Angiebr, thank you. I gave up the day I found out.
Yeah, google makes it worse. I'm already finding the sight helpful.
in reply to
Me too 100 days fagless today... take one day at a time and get used to it slowly get your gp to refer to pulmonary rehab I start may 9th x
in reply to
I will. I'm just not managing with the physical and psychological aspects very well
Margie2553 in reply to
this was me two weeks ago you will feel better its not a death sentence my tw friends have talked me through it one has had cancer and cold for 12 years
in reply to
PS: congratulations on your 100 day free of cigarettes
in reply to
Thank you good luck xx
Nottobad in reply to
Hi if you google only use BLF site or NHS choices nhs.uk/conditions/Chronic-o... giving up smoking will slow down the progression.
in reply to Nottobad
Thanks, Nottobad
in reply to Nottobad
I'm still coughingup blood. My CT scan, Chest X-ray and bronchoscopy show I don't have lung cancer. Does anyone else cough up blood in the sputum?
Nottobad in reply to
That is good that you don't have lung cancer. I was dx in 2006 with COPD I have never coughed up blood. But I am sure your doctor will look into that . Xx
in reply to Nottobad
Thanks. My doctor is proving to be rather cavalier
Nottobad in reply to
Some doctor are like that. But if they thought it was any thing serious they would look into. Just because I haven't coughed up blood dosnt mean others haven't could becoming from a blood vessel with coughing. I was once told by my consultant that no 2 people with COPD are the same. Xx
rbroome684 in reply to
I used to cough up blood in the past, bronchitis with coughing so hard it would tear the cells inside the lungs. Ive not it in years and no cough so what little couch I have, produces no blood
in reply to
PS: I've given up smoking
Azure_Sky in reply to
I started with mild COPD and yes, it did scare me witless. I read everything I could find. Much of it rubbish. Please make sure you have a spirometry test and ask the nurse to write down your Fev1 results.
When first diagnosed my Fev1 was 70%, a year later 84% My next test is on Monday 24th April so will see what the results are then. I find exercise very helpful. Walking my dog made a difference. Recently I haven't been able to do 2 miles a day because of ostearthritis.
Please don't be scared, COPDScared, as many people live for years and years after diagnosis. Do you happen to to know what type of COPD you have? I have emphysema. There are much more severe lung conditions.
I hope you feel calmer very soon. Giving up smoking will probably have made you feel more nervous, that will pass. The main thing is to try and find out exactly what you are dealing with, from your doctor.
Being single does make things harder, as I discovered when my husband died last July.
rbroome684 in reply to
Hi Arigcbr.
It is good to hear that you are doing so well when diagnosed stage 3. I have been told i have moderate COPD /emphysema . I find it very difficult to walk around the grocery store. A few months ago with a PFT my lung function was need at 55%.
I am hoping to find a way to get my endurance to more so it's not so hard to go to a mail box 100 feet down my driveway.
in reply to
I'm 44 and stage 3 and your feelings are natural I still have a lot of anger and hopelessness and should you ever want to chat just message me.Its a very scary thing to be diagnosed with copd and it takes time to come to terms with at least it did with me and I still don't fully have my head wrapped round it.It took me 3 years to stop smoking from initial diagnosis and have been through all the feelings of anger, self loathing and blame, helplessness and fear and still do from time to time there are some good people on here who will offer support and advice.
Take care and if you need to chat myself and others are here.
hoping2heal47 in reply to
SJM. This is a lovely post and reply - I'm 47 and newly diagnosed as well. I had quit smoking until yesterday. On vacation and it's been chaos w my family. I had a glass of wine and was feeling hopeless and have smoked several cigarettes in the last 2 days. Which brings on more fear, and self loathing. Thanks for your post.
tracyball1 in reply to
I'm similar age to you hun p.m.if you need to chat, I know exactly how you feel. I've started walking loads it's seems to help loads xx
in reply to mrsmummy
Thank you 😊
hoping2heal47 in reply to
I know that feeling. I was diagnosed. So far they say it is "quite mild". I still have to go back for lung function testing. Then I will know more (was diagnosed w spiral CT). No one feels sorry for smokers. Have you quit smoking?
Not only do I have emphysema but Osteoporosis, hypertension and the worst one is my Dr prescribed Klonipin (a benzodiazepine) for sleep 7 years ago and promised it was a low Dose and safe. It has proven to be anything but. I started having all sorts of bizarre symptoms and I believe it caused my Osteoporosis. Turns out while I have no psychological addiction or compulsion for the drug my body has become completely dependent. It's more like a brain injury. I'm trying to taper offf that which is causing more and more health problems. Anyway. Lots of support here.
in reply to hoping2heal47
Hopingtoheal47, thanks for sharing. I have given up. It seemed like I should at least do that.
hoping2heal47 in reply to
I saw that after I posted. I have memory issues right so my apologies. Congrats. I quit the day I found out (2 weeks ago) but have slipped here this weekend. I plan staying quit from now on as I want to be a good 4 weeks off cigarettes when I have my lung function test. I too am scared out of my mind. Feel free to message me. As newbies we can commiserate (((hugs)))
in reply to hoping2heal47
Thank you, ditto. Hugs
Hi scared
I'm a bit older but felt the same as you do when I was first diagnosed. I became isolated and couldn't walk very far and I had quite a few exacerbation episodes which are frightening and compounded the way I was feeling. I eventually was referred for rehab which built my confidence. I'm now going to jamming sessions and bought a cajon which is relatively light and I can carry over my shoulder. I know I'm better now than when I was diagnosed, that's mainly due to stopping smoking. Stay positive socialise when u can and drink water and exercise
Jimmy1c
in reply to jimmy1c
Thanks Jimmy1. I seem to get exacerbated easily. Going to beach just depressed me as I my chest was so tight, all i could do was think how things used to be.
jimmy1c in reply to
Hi I think feeling the way you did at the beach is normal. There's a LOT of psychology involved in our illness. An instance is i had a bad experience with bathing and getting dried where I felt so bad I called an ambulance. I was ok by the time they arrived and felt embarrassed. This made me nervous having a bath or shower and I would get breathless just due to these thoughts. I bought a bathrobe something I never used previously 😇 And I would put this on and dry myself slowly. I know don't need this and can bath and dry myself normally. This is down to me learning breathing techniques and feeling in control
I've rattled on a bit but I hope you know you can overcome these negative thoughts and take control
Jimmy1c
in reply to jimmy1c
Jimmy1c, you haven't rattled on at all. Everyone here seems very generous with sharing personal experiences. I find it very helpful. Thank you sharing 😊
in reply to
I went to the hospital last weekend and by the time (4hrs) they saw me I felt better. I felt rather silly
peege in reply to
Once you're sorted out with the right medications for you personally your life will change for the better. Sometimes it takes a while. Be good to yourself, drink plenty of fluid, it helps in so many ways. P
in reply to peege
I feel like I'm getting an infection in my chest. What should I do. I don't have any antibiotics and I'm alergic penicillin. It's Easter weekend here in the UK
mrsmummy in reply to
Many of us keep a rescue pack at home in case we are struck with an infection whilst the surgeries are closed. Ask your doctor about providing you with one. In the meantime do access A & E if you feel unwell over the holiday weekend.
Ianparrett in reply to
Hi COPDscared,
If you ring 111 then they will get a doctor to call you back or direct you to one of the out of hours GP ( mine is in the local hospital) they will usually be able to dispense prescriptions as well. You need a bit of patience with the 111 system but it does get there.
The panic does settle down especially once you take control of managing the condition.
All the best to you
Welcome to you COPDScared, it's good that you are on this site as there are many who feel as you do. It is so scary but you will, in time, find a way to live well with COPD.
I care for my hubby who has sarcoidosis and COPD and generally does well thank goodness. It's very hard to be alone though and my heart goes out to you. Please remember we are here for you. Xx
in reply to sassy59
Thank you, sassy59.
A specialist did tell my partner that his copd would stabilise provided he stopped smoking . He was given a guarantee that if smoking continued he would be on oxygen in 5 yrs! My partner had stopped smoking. As have I. He is on a changed medication now and to be honest I do feel there is a bit of an overall improvement. Or at the very least it certainly hasn't worsened. I always thought it was progressive but it seems this may not always be the case. Here's hoping of course. But you can see how people do manage their disease and look after themselves. Learn how to do the right things etc. I certainly at this moment don't feel that all is lost by any means in regard to the copd. I expect you will be staged. Giving up the fags is great so well done. Try to follow some of the members leads on here . And good luck. X
in reply to susieanna
Hi Susieanna, thanks for sharing that. My care providers aren't very helpful to be honest. They haven't even told me what stage I'm at.
susieanna in reply to
Yes. I see. My partner has yet to be staged too. Next time you see them ask questions about everything you would like to know x
Damon1864Volunteer
I know it comes as a shock, but you will be fine, like others have said there are lots that we can do to help our lungs. Get plenty of exercise and eat healthy will help a lot. And please remember we are all here to help and support one another, so never be afraid to ask any questions or for help. Take care 😊 xxx Bernadette
in reply to Damon1864
Thanks, Bernadette.
Hi COPDScared,
Well done for giving up the cigs!!! Many spend years trying and you've already done it! Having stopped there are still a few things you can do to minimise the effects of the COPD. GP's are hopeless (okay, not all, some are very, very good but yours' sounds like the majority) they know little about COPD and less about how to life with it - you need to get him/her by the throat (not literally ... please!) and demand a referral to a Pulmonary Rehabilitation course where you'll find out about eating, drinking, exercise and generally living with COPD.
Nurses will guide you on how to best manage chest infections (exacerbations) and (hopefully, if necessary) the GP will supply "emergency medication" (not as scary as it sounds).
The trick is learning how to live with it and managing it rather that letting it take control.
Make an appointment and get the GP to do what they are paid for - looking after you!
Oh, and welcome!
Hello and welcome. I'm not going to give you any more advice.....you've had some great responses already.....I just wanted to say "hi" and that we're here for you. You're allowed to rant and rave, and feel angry and scared, but knowledge is your best defence. The reply from y_not tells you what your next step should be. Good luck, and please let us know how you're getting on.
Take care. Pam XXX
Please don't waste time feeling angry. None of us can turn the clock back as the other posts have said try to stay positive healthy and exercise. Laughter is a great healer.
I was diagnosed three years ago just as my life was getting easier but anger causes stress and stress will make your condition worse believe me iv been there.
in reply to Jayneh13
I've suffered with anger due to childhood trauma, and only recently came to terms with past trauma and then to get this diagnosis has set me back. But this group is helping as I don't feel so alone with it.
Hi COPD scared, good to meet you and sorry to hear you are struggling. I was also shocked when diagnosed but started an exercise regime straight away, eat healthily, drink lots of water, and try and stay positive. There are also you tube videos that show how to do the breathing exercises that helps keep lungs clear, and get flu jabs swiftly every year. Like you I have also suffered childhood trauma (led to many years of heavy drinking and smoking) and found help with counselling and books - I am happy now (mostly!) and very grateful to be alive. All the best and take care x
Greetings. Your diagnosis is NOT "the End". Trust me: I thought it was, 30 years ago but I'm still here: more slowly, less active, but doing most of the things I want to do.
The biggest problem with COPD is that it tends to go hand-in-hand with depression. The diagnosis kicks the bottom out of your world, then you fear the worst. It's debatable which to tackle first... Fortunately, walking will help both your lung problem and lift your mood - so try that. Then see a specialist who can put you on the right meds for your breathing and depression. Then -- live your life.
Cheers
Catnip
in reply to Catnip
I walked a couple of miles (more than a couple , but that's not why I'm writing) today so I could get my antibiotics. Felt nice to be out and independent. Got home and Ill I want to is cry. In short, the depression aspect is difficult. I've experienced depression before, but this feels different. I'm fine, just sharing. I'll probably cry my eyes out over an advert later - and feel better for it.
Catnip in reply to
Sounds like you need meds. Clinical depression has around an 80% occurrence in COPD patients because of the nature of the disease. If you can get your depression under control, you'll handle other things much better. Depression wears away the soul
I had clinical depression but didn't want to admit it. When I finally hit rock bottom, I was rescued by two wonderful ladies who saved the day. Now, I take one anti-depressant pill each night; I still struggle to breathe but at least my head is in a better place most of the time which helps me to cope.
It's still not the end of the world!!!
Catnip
Hello COPDscared. I just wanted to say welcome and to reassure you that many members here feel as you do. It's perhaps a question of degree and that time makes all of these things easier to deal with when you find ways of coping. You will. You have friends now who understand. Sue x
Hi COPDScared I fully understand how you feel I was diagnosed over 11 years ago now and like you gave up smoking straight away well done the rest is a walk in the park.
Like you I was scared when told I had COPD never thought it would happen to me after seeing the GP I came home and cried then wiped the tears away and looked at ways I could improve my life.
EDITED by moderator
COPD effects everyone in different ways just because you can't run a marathon doesn't make you a weaker person I can't run a marathon and you want to see how breathless I get making a bed.
BLF do a information pack ring them and ask them to send you one take care
in reply to onamission
I walked today and felt empowered and I think that was the intention behind some of the more direct approach.
Sometimes a arm around my shoulder works.If I was a premiere league player. I'd be a moody troublesome talent.
PS: Managed to cry a bit, which was needed. Watching 'Amazing Spider Man 2' hit the spot...😀
onamission in reply to
pleased you got out bank holidays can drag on a bit
EDITED by moderator
when I gave up smoking I put weight on and because I have lower back problems exercise is difficult. I went on a pr course your GP will do a referral for you. I did my pr course at the local hospital its run by physiotherapist you learn so much from meds to exercise to diet and it was at pr I learned about swimming.
I go to my local pool 2-3 times a week I have met some lovely people some that want to loose weight some just want to get fit but a bunch of us go out once a month and now we have joined a aqua fit class.
we are always hear to support you some members have been hear longer than me but if we can help anytime don't be afraid to ask.
in reply to onamission
Sounds good. Hope you had a nice Easter
onamission in reply to
Thank you and if your feeling low come on hear and look for Tams jokes they will cheer you up 😆
I was diagnosed in 2002 with asthma, then suddenly someone decided it was COPD - have never been referred to anyone for confirmation and, to be perfectly honest, I don't trust anyone's opinions these days. I'm still here 15 years later doing my own thing and none the worse for that. I packed in the smokes as soon as I could - for me that was the life-saver. You've done that so you're over the biggest hurdle. I couldn't do the jolly hockey sticks exercise if I wanted to and I eat anything I enjoy - we are all so different that there is no "one size fits all" solution or treatment despite what many seem to thnk. I have found from being on this site for many years that lung problems seem to create a lot of anxiety, then the stress of that aggravates the lung condition; it would do no harm to mention this to you GP - a short term medication for anxiety might help. I heartily agree with the advice to contact BLF. Do give yourself a little TLC until you're sorted and try to get something of interest in your life - we are not our condition.
in reply to Dragonmum
I'm thinking about doing something proactive. I'd like to raise awareness about the the disease. I saw people smoking today, an mature gentleman at a cafe. A young mother with her family. I just wanted to shout: STOP SMOKING.
Azure_Sky in reply to
I do hope you will keep coming here and update us on your progress. You have friends here who truly understand. Many of us suffer, or have suffered depression and anxiety. You are not alone.
Dragonmum in reply to
You need to sort yourself first; most smokers are fully aware of the dangers, I know I was, but it's their lungs their choice. Until something nasty happens most will go on thinking that it only happens to other people. Am glad you seem a bit more up-beat and hope you continue to improve.
Some people carry on smoking regardless of the risks. It's the old old story. they won't be affected, in their minds they are safe.
A man convinced against his will, is of the same opinion still. There are people who are heavily addicted to nicotine, as much as alcoholics to drink.
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