Really worried about the future.

Hello again, I spent a sleepless night last night (mostly on here) and am leaving Google alone, I guess I am not unique from other posts that most newly diagnosed emphysema suffers automatically think I am breathless I must be dying and only at best have a few years left, it is heartening to see some people here who have lived with this disease for many years, are you the exceptions or can I really dare to hope I have a future?, I was told 7 years ago not to worry emphysema will never be a problem and now I am a bit breathless all the time, chest x Ray showed hyperventilation of lungs, waiting for spirometry test to confirm COPD worse not just asthma, really still very worried. Thank you for bearing with me while I try and get my head around everything.

21 Replies

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  • Hello Alauralane .

    I'm sorry to hear things haven't been so good with you lately. Really, you don't need to ask us to ' bear with you ' . It's totally okay, not to be okay.

    It sounds as if they are still figuring everything out. It's great that you are staying away from Google. I know right now everything is overwhelming. Take it a step at a time and some days it's perfectly fine to not take any at all. Sometimes, if a you manage to do is breathe that's enough.

    Please know you can come here anytime to share what's going on with you. It's such a great place to receive and in return give support.

    Looking forward to hearing how things go for you. Sending a gentle hug. Hang in there.

    Cas xx 🍀🐞

  • Thank you so much Caspian, it is good to know I am not alone, and that you lovely people are on here, with your advice and personal knowledge of this frightening diagnosis you are right they are still figuring it out, thank you for your hug, very much appriciated. Alaura.xx

  • 😘😘😘

  • Hi Alauralane, sorry if I sound a little curt, adding a little perspective, are you worried that you may be run over by a number 10 bus? With the right lifestyle changes then there is the same sort of chance of death from COPD.

    Do not worry about tomorrow, it never arrives anyway, it is always today. Today is what you need to concentrate on. I promise that eventually you will accept the fact that you have COPD and will have stopped the worrying, taking it all in your stride. It is early days yet for you, there are lots of tips to make life easier to do things from all the members here, all you have to do is ask.

    You have a lot to learn, a little bit like starting a new job. Your new job is to learn how to live with COPD and take control of it. Easy for me to say, but gaining a positive attitude is such a good start. Remember there is always "more than one way to skin a cat", take a few seconds to think about how you are going to tackle doing a task, the easy way or the hard way, if you're not sure then come on here and ask.

    "......it is heartening to see some people here who have lived with this disease for many years, are you the exceptions or can I really dare to hope I have a future?"........ Of course you can have hope for the future. We are all just ordinary people like you, not special, but we have taken the "bull by the horns" and made the necessary lifestyle changes. There are those that do not fare very well, but that is their choice, I have seen people outside the hospital on supplementary oxygen and they are still smoking cigarettes, unbelievable but true!

    When you get a bad day it is ok to "sound off" on here, we understand. That is the beauty of a self help group, we understand because we live with it too and go through the same trials and tribulations that you have to.

  • Thank you 2greys, you be as curt as you like, especially if it's what I need to hear in a way I need to hear it, I do ride a Harley so statistically that's got to be worse than a number 10 bus, usually I do have a positive attitude as I have lived with fibromyalgia for a number of years and it has stopped me doing nothing, I just need I guess to let this sink in, get correct information, and keep talking to you guys and girls on here, truly my heartfelt thank you to you all.

  • I hope that Harley has nice loud pipes. I'm a rider to and when I feel the need for speed pillion my hubby on the blackbird ..i was diagnosed this year stage 3 copd ...i quit smoking and flipped diet to lose weight exercise regular and attending PR at the minute very beneficial. I intend to live a full life and ride as often as I can lol ...iv stopped work recently but get of Google it will bring you nightmares about the condition and that's not worth it...i hope you get sorted soon

    Angie xxxx

  • Thank you Angie, you are so right you need to blow them cobwebs away and yes she has real loud pipes, I have banned Google, I have scared myself enough for one lifetime, and I will try and get the information I need from Drs and BLF only, will ask about PR when I go back to Drs next week. Thank you for your reply. Alaura.xxx

  • Your welcome stay in touch and ride safe xx

  • I will do, thank you, you take care out there too.xx

  • Take each day as it comes. Some days you will be very breathless, that's when you listen to your body, don't over exert yourself, and take it easy. Other days you will wake up and feel so much brighter, it's these days we all enjoy as and when. We feel better, less breathless, smile more and enjoy the good days. Hopefully you will have more good than bad days, but keep smiling 😀

  • Thank you Jummie for your positive words, all very true, I really do have so much to thank you all for on here, your support and wisdom has made a difficult time far less so, thank you.:-)

  • It dos not matter what illness you got leave the net b as you will land up with more so leave it to your doctor to tell you so in joy a long life

  • Thank you David, so true, I have learnt a valuable lesson.

  • Ask your doc to refer you for PR, you'll learn more about your condition - 'from professionals', you'll get fitter, you're guaranteed to have 'something' in common with the others there - and you're almost guaranteed to have a laugh. And - hopefully, it will help you to get things into perspective.

  • Thank you Magpuss I ask about the PR when I see them next week, perspective is really what is needed right now, calming the panic, and speaking to people that understand really helps, thank you.

  • Hi Alauralane, things are all new to you it will take time to come to terms with this but be kind to yourself, you mentioned that you have fibromyalgia as well , I to have fibro, asthms and just last month i was feeling like you when I was diagnosed with rheumatoid arthritis which is also affecting my lungs which I had no idea that RA could affect your internal organs. I am luck to have a great consultant and he has got me on medication and refered me to various other members of his team physio as I m on oxygen 24/7 so he said that they would help me with gentle exercise, podiatrist and occupational therapy as well as pain management and self management, he has explain how the different types of medication he will be look to start me on and he advised that this should help improve my breathing, I felt like I had one the lottery as there was a answer to why I thought that i was having so many fibro flare ups that I could not get on top of now I know the answer even though it means more medication at least i am getting proper care, I was hibernate since I was given home oxygen but I gave my self a good talking to and started finding ways to get out and about as im only 47 and soent most of last year in hospital so I got a new scooter and signed up with dial a ride and i go out shopping with them every week and with having the nice weather i have been out and about , but we all get down when we get told that there is something else we have to cope with but we get there in the end,

    This site has been a real god send for me , even though we are all at different stages and treatment there is always someone here who has been there too or similar, sometimes it can also be a good laugh as not everything is taken to seriously.

    Be gentle with yourself it takes time to come to terms with new diagnosis and treatment learning ways around the obstacles in our way , there can be lots of tips from people here and even just to have a rant about anything there is always someone here who will listen to you no matter how big or small .

    Whishing you a pain free restful sleep,

    Loraine x

  • Thank you Lorraine, I am glad you now have a diagnosis for your RA and by the sounds of it a very good Dr, I know very little about it sorry, I am also glad you are getting out and about, you are so right we are seldom kind to ourselves, and now is the time to start, it is all new and scary but this amazing site and it's members have been more help already than they know, I too also am 47 with asthma and as you know the fibro, and now at least I feel there are many here who will listen and understand. Thank you again.xx

  • Alauralane, hyperventilation comes mainly from stress. The more you think you're short of breath the more you try to breathe in

    Solution: please go to your chemist and ask him/her some paper bags (NOT plastic). At home, take one of the bags sit and do some relaxation of the whole body. When breathing place the paper bag over mouth And nose. Keep breathing into the bag As Calmly As Possible.The trick is that the bag will reinstate the balance Oxygen and carbon dioxide.This should ease your breathing too. Learn to breathe out more than breathing in too much. You won't die just yet. Find whatever can relax you. You will feel better and in better spirits too. Mic

  • Thank you Mic, an important piece of advice, I will try this technique, I have been wondering what percentage of my SOB is hypoventilation, I have also been trying the breathing out more than in, I am looking forward to being in better spirits thank you.

  • Don't worry until you get spirometry results, even then Docs will explain everything. Stay off the cigs. Exercise as much as possible, keep your weight down. Less weight less oxygen demand.

  • Thank you Crickey, you are right about waiting for the results, and the sensible advice I am feeling way more informed now, thanks to this site and not quite as anxious, fortunately I am slim, relatively fit and quit the evil cigs over 20 years ago. Thank you for your reply.

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