Desolate day

Thought I was coping with this recent diagnosis of emphysema but today my heart was in my boots. I had an xray a while ago and while there were signs that I had been a smoker, it was felt that I didn't require any treatment nor any follow up tests. Then a rather careless locum blurted out that I had COPD and that I would be offered oxygen therapy when it progresses. I have been up and down emotionally since then. I don't have a partner to lean on - I work almost full time and look after my 90 yr old Dad, I don't have siblings to share the load - life is joyless! I am scared and alone and don't feel brave enough to cope with what is in front of me. I made the mistake of googling life expectancy - big mistake! Sorry to off load but don't quite know where else I can express my fears - I know you all will understand.

28 Replies

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  • Hi never google anything like that. Everyone copes in different ways, eat healthy,keep fit with as much exercise as you can manage and you will be surprised how well you will do. If you everr feel lonely,afraid or just want to off load we are always here for you. Take care. Love Bernadette 😊 xxx

  • Thanks Bernadette - I'm just having a very bad day emotionally. xx

  • We all have them so please don't worry. I'm here anytime you want a chat 😊 xxx

  • Dear Moosemoose, google is not to be recommended for illness info as it is pretty scary. Surely you should be offered some medication and help going forward. The good folk on here will understand and sone will empathise but don't dread the future because you can live a good life. Take care of yourself and we are all here for you. Xxxxx

  • Dear Moosemouse - you are just the kind of person this forum is here for. It is much harder to cope when you are doing it on your own. You also have a full time job and are a carer. There are lots of people on the forum who have COPD who manage to live a full life. We all have our ups and downs but please keep coming back and sharing yours. You might find it helpful to talk to one of the BLF nurses this week. Click the red balloon at the top of the page and that will take you to the BLF site and access to the nurses.

  • My rheumatologist said to me quite early after my diagnosis that it was ok to not be ok and that's so true. You did the right thing to reach out to us here and we are all here to support each other through the difficult days which none of us are immune to. I had a bad day today both emotionally and physically but have nearly made it through to a new and hopefully better tomorrow. Stay strong and happy to chat anytime x

  • I can't understand why you were not told I was diagnosed over 10 years ago at my GP's I was given inhalers and regular lung function tests to monitor it.

    We are always hear to listen and support it's not the end of the world and there are things we can do to help our condition

  • HI there. Am in exactly same boat as you. Was here over a year ago and then told I didn't in fact have copd. Now a year later, I do. It is so cruel.

  • Hi, Did you get treatment for the emphysema ?

  • Excellent advice from the forum moosemoose I can only reiterate the advice given, eat well, live well, exercise and take each day as it comes, easy to say I know, as a IPF sufferer I can vouch for the advice given, take care my friend of yourself and your Dad.

    Best Wish's Sonny

  • Hello Moosemoose and I can understand how you feel,but you can definitely slow down the progression and make any need for oxygen a long way off. Why is it we all fear needing to use Oxygen? I did,but now need it 15hr's a day,and I've only just become able to accept its like another medication. I hated it,yes even embarrassed just wearing the nose cannular. But if you do ever need to use it,just remember that we do adapt to things even if we can't imagin it at first. Take care,stay as healthy as possible and give yourself a pat on your back for all the care you take of your Dad. Best wishes.

  • It certainly was a careless locum. There is no certainty it will progress much if at all. Oxygen will not necessarily be required either. Did you know most people will die with copd - not because of it? I hope you are feeling a bit more hopeful now. x

  • Thank you - I don't know what has got into me today. I feel that I have nothing to live for. Life is so hard at the moment. I guess I miss having someone to support me through all this. I am so scared. Tomorrow is another day so hopefully I will wake up with a bit more grit than I have today.

  • Hi we are all allowed down days and it's good you can share it with us. I have no support in the real world either and this can be very hard sometimes can't it?

    The only support I get is on here too. x

  • Sorry to hear you are feeling so down - sending best wishes x

  • Thank you to all your much needed support. I thought I was handling all this pretty well but I hit a brick wall today. Life certainly can be a struggle at times for everyone.

  • Bless your heart ... you have all of us. Any time you need to chat.

  • Hello Moosemoose

    I feel so sorry for the situation you find yourself in especially with you looking after your dad and job and home responsibilities and so on ......

    I know how you feel after hearing about the C O P D , I remember how I felt when I was diagnosed , but at least you have the encouragement from us to adjust your lifestyle to take on the changes to help !ike healthy eating and the all important exercise as Bernadette has said .

    To help you with your anxiety ......I was diagnosed two years ago and with exercise and getting to understand the problem I am feeling much better now than I was then

    If you get the opportunity to go to pulmonary rehabilitation it is hugely helpfull

    Anyway to finish, things are often manageable and not as bad as we think and worry about

    And as to being on your own ...... Your not because you have us ! Any time you need to unwind we are here

    Anytime

    Graham

  • Yes, as Graham says - if you can go to rehab, you will get support in many ways - exercise is wonderful for keeping you in shape and making you feel better physically, the others there are in the same boat as you, and they will help you feel like you belong there, sharing emotions and good fellowship, you will get much more information about lung diseases and their treatment, and lastly, it's fun! Going several times a week gets you out of the house, too! Rehab gives you purpose in life. Betty

  • Good morning,

    Everyone has given you such good advice I can't add any more, except to say we are here for you - all in the same boat. I've dropped anchor and am going nowhere...I like my life here on this planet. I too live on my own like many others on here, but do appreciate you are caring for your lovely Dad too, which is an added worry for you. Believe everyone - don't be lonely, and no more googling..

    :-)

  • I have been on the borderline of needing Oxygen for 2 yrs now I live on my own with no family & been home for most of 3 mths so now I have the Town Rider twice a week to take me shopping oh the joy of being out! I have COPD plus a Hiatus Hernia so gasping for breath just walking. You need to do special exercises do they do Pulmonary Rehab where you live it helped me a lot, I know how you feel but we have to help ourselves as well get another opinion form different doctor

  • Forgot in last comment with lung disease we need over 3000 calories a day as we burn a lot more just to breathe look up diet/exercise forCOPD it wil help you a lot God Bless

  • My husband has copd which he has had a long time, he do even looking like he needs oxygen. He has a couple of puffers he uses once in the morning and seems fine . Do not dispair

  • Dear Moosemoose...don't be scared everyone here has been where you are now...remember that sometimes Google is your friend...but not when it comes to illnesses! xx

  • hi moosemoose....! we must be related and' had parents who love moose!!! i🐌 i feel i can relate to your fears and concerns and just want to tell you

    you will find an inner strength you never knew was there. this new journey you are starting is unknown to you and of course one you didn't sign up for, however, i believe our attitude and determination to control/manage this illness can make a big difference. please continue to join us for help and support. Mooskie

    no

  • Hello Moosemoose & welcome.

    I understand your fears as I,too,am an only child & divorced. So, I've got to look out for myself. I do have a son who lives about an hour away so that is a help. But he has my grand daughters & a business to look after which I respect. I've been diagnosed with stage 2 emphysema so needless to say my life style has changed - probably for the better. Now I'm excercising regularly - never did that before! I use an inhaler & am going this week for an evaluation to see if I'll be eligible for pulmonary rehab which I'm told is fabulous! This disease can be controlled & its progression slowed according to my doctor. Keep seeking info, stay us on this website & try to stay positive. Thinking positive is still the best medicine - 50% of the game!

    I'm 75 yrs. & still working part time - I manage a thrift shop for a local church ( for the past 10 yrs.) single- handed & I also do catering & private chef.I ,too, took care of my mother before she died several years ago so I really know where you're coming from,as they say! What's really depressing is so many of my friends that have passed away or moved away for retirement. Also, if you're not happy with your MD get another one - I did & it's the best thing I could have done. My new doctor is a really serious pulmonologist who answers my questions & doesn't rush me through an exam.

    In the meantime,I hope I've been able to help a little. Please stay in touch.

  • Bless you all for such encouraging posts. I have read every single one over and over again - all so supportive. I realise that this diagnosis is never going to be easy to accept. I looked after my brother before he died at the age of 43 from COPD so I am petrified that I will be going down that pathway. He was always a sickly child and suffered with his chest since he was a baby whereas I have always been bouncing with health - I only ever smoked socially but gave up years ago and up until this year never really had a cold. I think when my Mum died 2 years ago and I was responsible for looking after by Dad - it was then that my health started to decline - I seemed to get everything Chronic fatigue, Fibromyalgia and now COPD. I am 61 years old and wonder what I will make it to my 70's. It helped to off load to you guys and I do so appreciate your advice and support. It did help me realise that I am not alone at all. Many many thanks x

  • I find the problem with having a few medical conditions plus COPD I tend to be lazy we need to do some form of exercise daily, eat a high protein diet 2 things I have not been doing but got to start again also I have my Pulmonary Rehab book which they gave me after my course so must start again. I know it is hard to be motivated but we have to help ourselves as much as we can.

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