Hi there, a week tomorrow since diagnosis and has been hell. Cannot function or get enjoyment from anything. Have constant ‘sick’ feeling in stomach and just can’t stop thinking of COPD and looking up information about it. Feel panicky and anxious, feel breathing worse than ever as concentrating on it so much. Scared to go back to doctor to find out stage in case worse than I think. Don’t know why wasn’t given rescue inhaler and was given maintenance inhaler. Can’t eat or sleep properly as thoughts interfere. How can I get past this ?????
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Shazza59
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Hello Shazza59 .
Almost everyone who first joins this forum has a bit of panic and concern about their diagnosis. It's very natural. And everyone almost always does the "Google" thing. I will tell you what everyone told me. Don't Google . The internet will tell you horror stories. Our disease is very unique to each of us. The internet and even the doctors cannot give you a number as to how long you will live . With a good diet, exercise and self care many, many of our members here live fulfilled lives. Sure, we struggle at times, but it's definitely not all doom and gloom. 😊
I would say go back to the doctor and face this head on. Find out about treatment and potentially joining a pulmonary rehabilitation program. Please believe me, it's not the end of your world. 🍀
Please let us know how you are getting on.
Sending warm wishes.
Cas xx 🌞
Thank you so much Caspiana, that is very reassuring. I will get an appointment with my GP and will keep coming on here for encouragement, I will find out about rehabilitation programme. Couldn't sleep till 4am this morning and alarm goes at 6.30am to get my daughters out to school and driven to buses etc, so tired and think I feel pains in my back now that we're never there before. Thanks you again and keep well.
It will work out in the end.i felt as you feel now.tjat i think when i joined this forum just over2 yrs ago.
Shazza59• in reply to
Thank you Reiver, did it take a long time to sink in and adjust life or do you just keep going as normal, any advice appreciated.
Hello Shazza I know it frightening when you first get diagnosed make an appointment with the doctor one who you know will take the time to explain things to you .asked to be referred to the pulmonary nursing team they will be able to show you breathing tectonics that help with the panic you feel when you can't get enough air in. Once you speak to other people who are suffering with the same problem you realise you can have a normal life but with a few hiccups. I was diagnosed in my thirty's I'm now 75 and worked till i was 66 and still giving the Grime reaper a run for his money. Own your illness don't let it own you and you will be fine kick dr google into touch and come here and talk to people who live with it on a daily basis
Good luck
• in reply toShazza59
Sorry shazza i knew there was something wrong prior 2 diagnosis.in the end even i thought i had got copd only cos seen some friends who lived with it.accidently found this site got drs appt told him symptoms and said i want a ct scan an xray does not prove anything for copd.gp looked bit alarmed and referred me 2 glenfield hospital.
Cas is right.dont google.i did b4 i found this site.convinced i only had3or 4 yrs 2 live.
Eat good vitd pillsetc avoid cigarette o
• in reply toShazza59
Shazza59
I have wrote u a reply when i saw u sent me a reply.i also was going 2 say vaping was ok 4 me jand i honrxtly didntiss smoking.but iam now stopping vaping part health part fed up with mixing vapes.the vape oil is oil and is messy.xc
Be assured that it is only fear of the unknown that is pulling you down at the moment. COPD progresses very slowly, you are the same person that you were a couple of months ago, before your diagnosis. Fighting the acceptance of your condition will not do you any good, only increase your stress and anxiety which will make your breathing worse. Things will get better for you, stop panicking, it has only been a week.
I have severe COPD and I will be off to work (full-time) shortly, on my feet all day long. I live life to the full with only a few short comings. Once you are acclimatised to your condition the world can still be your oyster. It will take a little time and doing a Pulmonary Rehabilitation course will help you achieve a near normal life once more. Don't lose faith, things will get better for you, it is not the end of your world or your life. There are many here that live and have lived for a long time with COPD who can advise you. The future is nowhere as black as it might seem at the moment.
Morning Shazza, looking from a carers point of view, I remember Pete being diagnosed with COPD and I burst into tears! I was afraid as he already had sarcoidosis. The diagnosis was 8 years ago and Pete is still here, managing all that life throws at him.
Take strength from this forum and remember you’re never alone. Xxxxx
Sorry to read that you feel like this. Sounds like you’re having a panic attack type of response, this I believe is quite common. I was diagnosed with COPD/Emphysema just over 3 years ago and it hasn’t affected my life one little bit. The first few days/weeks after diagnosis I was worse than I am now until the maintenance meds had kicked in. You should go back and see your Doc and he can put your mind at rest. x
Hi shazza , I don't know if you live in the UK or not, but if you do the BLF have a helpline , and you can talk to an advisor. If they are busy they will ring you back.
03000 030 555
And please visit your GP and explain your worries, or ask for an appointment with a nurse.
Take care now.
Hi Shaz za, it's only natural for you to feel this way, I was diagnosed in 2015 and was pretty much the same as you, but there is life with COPD, once I had consultation and medication I have been pretty much back to normal I do have to pace myself and know my limitations but with a lot of help and support from people on this site I now cope quite well, but you do need to stop using google for info it will only scare you, work with what you have and take your meds as prescribed.
Belive me THERE IS LIFE WITH COPD, I do Tai Chi, Meditation,Cardiovascular work outs and walk every day, now dose that sound like a poorly man with copd, no it doesn't, so take time to get used to it,don't panic and use this site for any questions you have, someone will have the answer for you, take care and keep in touch, we are a nice bunch on here and will help and support you.
Txx
Yeah. That's good advice
I do the same I use my local gym and do an hour on treadmill at a moderate pace with an incline of 12 to 15 and apparently excessive is the key and that's come from my cops nurse so go for it
I have had lung issues for pretty much all of my life. But When I was told I have heart failure did come as a real shock to me. This was back in 1992. You have had some great advice on here and it is a case of you must take control of it not the other way around. I know that is not easy but keep a "Positive Mental Attitude"
BE Well
Hi Shazza. Yep normal reaction! Get an appointment to see your GP, ask him to set you up with a respiratory nurse and some respiratory physio. Things will go a lot smoother if you can get your GP to understand your needs and get him on your side.
You will need some emergency rescue meds to keep at home, antibiotics and steroids, that you can take if you have a serious chest infection at weekend. These are standard when you have COPD.
I have two inhalers, Ventolin and in my case Spiriva Respimat. Its taken me over a year to find a second inhaler that hasn't had any significant side effects, so don't be stuck with an inhaler that makes you ill!
I got a pup, lol She gives me a reason to get my butt out of bed and get plenty of exercise!
Keeping yourself healthy is a must! Eat well, exercise, physio, yoga, anything that gets you moving. Its your life find something that keeps you active.
What you do now will determine the rest of your life and how you want to live it.
I am 65 and plan to dance with my new granddaughter at her 21st birthday!
I/we will always be here to answer any questions and just to chat.
Take care
Steve
Thank you all for your wonderful replies, you are such a great bunch of people. Feeling a bit better now and will try to motivate myself now, could easily crawl into bed and not get out but will overcome that mindset. You are all inspirational and I will have many questions to come. Thank you all xx
Shazza59, I myself am new to this site although have been reading it for for some time there are some very wonderful and supportive people. I suffer from besides my lungs to Type 1 and having seizures(epilp.) I live my life to the fullest each and every day. It is natural to have want to crawl in bed or under a rock. You have beautiful children to live for some said they got a dog I've always had one. Mine forces me to exercise get up and moving, go with the kids to the park or the woods and explore new places. Bake cookies delight them each day to make them have a smile you will receive ten fold and be cheered so. My Resp. doctor given to me in ICU when I was in a coma told my husband I had the tiniest lung they had ever seen for my frame 5'5 and at the time 105. I was born that way became an Olympic swimmer having to give up being diabetic, not due to my lungs. You can live a long life remain positive as many have mentioned it is mental attitude. Enjoy the love surrounding you, get out and embrace life. May today be a new beginning!
Thank you so much Cherv for your kind words, it made me cry but not in a bad way. I should be grateful but find it so hard at moment. I have 2 dogs and will get back into walking them myself as have let husband take over most things as feel so low, have to motivate myself to make the dinner. Breathing seems so much more labored since got diagnosis. GP not very helpful as when asked about exercise she just shook her head and said damage is done. She is extremely anti smoking and called my vaping smoking and said if did not give up I would be on oxygen in 10 Years. Needless to say I gave up and had been off cigarettes 4 years. Will think of your words when feeling low and hope you are doing ok, x
Hi Shazza59, we are in a pickle, as they say, aren't we? I'm just three years down the road from you. I read most of the comments you have received and all are great so about all I can do is relate my experiences in case there might be something there for you.
I'm a goal setter and many years ago I said I wanted to live to be 100. At the age of 51 I came down with cancer and after all these years it has mostly stayed in remission but I still have my periodic checkups. At 56 I had my first heart attack followed by a triple by-pass but after all 3 of those episodes I still stuck to my goal - 100! At 70 I had my 2nd heart attack but I still stuck to my goal - 100. At 89 I had another blow, lung cancer but after another Cat Scan and a biopsy it became COPD - but I'm still sticking to my goal - 100. I spend 6 days in the hospital last November while a team of Dr's wanted to see what they could do to improve my heart condition, Afib and heart failure, and after the 6 days they said there was nothing else they could do to improve my present condition, so let nature take its course.
What have I done? Within 6 months of my COPD diagnosis I had a 2" ring binder full of information on COPD (after one year I threw it all out) and then I've done this; 1. found a good pulmonologist, 2. Followed directions, religiously, from what my Dr. said to do and that includes receiving lots of gadgets, a flutter machine, a nebulizer, and tricks to learn how to cough. Those and other things like, exercising, not going to the hospital or in a crowd without a mask and wash your hands.
There, Shazza59, that's all I can pass on. However, with all of the good things we do we all know that death must ultimately prevail. I accept that but I'm still going to live to be - 100!
Wonderful words Saramana, you are an inspiration and may I say it a breath of fresh air. You have gone through so much and remain positive. I can only envy your positivity. Feel health issues so hard to deal with and get afraid, which of course makes everything so worse especially at nighttime. I am hoping some of your positivity will rub off!! I have no doubt you will get to the 100 Mark. I’m sure I will have many questions ahead of me and thank you for that uplifting response and advice. Take care x
Hi Shazza59,
I totally agree with Caspiana. I did much the same as you and googled everything etc. Got on this site who have been fantastic and the information I received definately helped. I do think most people get a bit panicky about their diagnosis at first but I found panicking made it hard to sleep, made it harder to breath etc etc.
Wish you all the best and take care
Hi shazza I have been diagnosed with pulmary fibrosis of lungs for 5 years now I to was just like you when I was first diagnosed I was crying all the time looking at Internet panic panic that was all I could do 5 years on I am still learning but I have realised what makes me worse ie tiredness, worry, and not talking to anyone about my condition I have learnt to be more positive and get on with my life this helps me so much you have done the correct thing by coming on this site to talk to people who really do know what it's all about.
I am sending you a big hug and my very best wishes, take care xx
Totally natural reaction. Life will take time to readjust to. Be kind to yourself though and give yourself little treats xx
Well done for giving up smoking, I'm sure that will help you. I didn't have to give it up because I don't smoke but my addiction is chocolate!!
I'm operating on 20% lung function so I understand your anxiety. But I am still managing to work full time as a teacher. I just sit down a bit more!
Everyone talks about the benefits of pulmonary rehabilitation. I would love to go on a course but I'm not eligible as my diagnosis is not COPD!!! Hopefully your doctor can help you get on a course and benefit xx
Take care xx
This site is fabulous and very supportive xx
Thank you Lynne, bit of a chocoholic myself!! Do you get short of breath whilst teaching ? I feel quite out of breath this week and I hadn't been before, only on walking fast so don't know if deteriorated within the week of diagnosis. Will try and get on the course. Take care xx
Shazza am in same boat. Not been diagnosed yet and six days from consultant visit. Mind running over time thinking off all things that could be wrong with me. All I can think is that’s it game over. Your gp seems to be a huge thing. Mine told me she was shocked I was functioning never mind excersise.
Stay strong we have to live life to the max
It's hard Andy, I'm a week diagnosed today and just can't get to grips plus not being referred to Consultant just told to have another Spirometry test in a year. No rescue inhaler given. Feel chest very tight all this evening and keep clearing my throat and voice is hoarse, think might be maintenance inhaler. Hoping I will sleep but afraid getting chest infection with tightness but have not cough or other symptoms of a cold. Will need something for anxiety if this doesn't calm down. Hope Consultant sheds some light on things for you. I don't know what lung function I have or stage and am afraid to ask as will worry me more. Wish I felt as I did just before diagnosis as not much SOB then. Take care.
Hi I've recently been diagnosed as stage 3 after years of having xrays and ct scans being told they were all normal and clear but with a really bad cough more and more breathless and pneumonia 4 times in 5 months I was eventually given a breathing test because of that outcome a respiratory specialist decided to check my ct himself he told me he too had had the report to say it was normal and clear but it was far from normal and clear and the more he looked at it the more concerned he was getting. I'm still angry im in shock im upset I know the road im on as I care for my mum who's end stage copd. I wanted to know the stage so I knew what to do to get on top of it. I'm a born fighter and very positive. The anger im feeling lit a fire in my belly to fight.
I have been diagnosed for 2 years now. Didn't find this site for quite a while, so hopefully you will more quickly be able to get the support and advice you need from people who actually have a lung condition, rather than from health professionals who have no actual experience.
Last year I joined my local Breatheasy group - is there one near you? Although supported by the British Lung Foundation, no information about them was given to me by my doctor's or the clinic. They can be found online.
After the initial shock of the diagnosis, I decided that I would make the most of every day. I quit work, although I am still a few years away from my pension. Already a keen grower of things to eat, which keeps me relatively active, I joined a sports club where I swim, do yoga, Pilates, Zumba etc. I joined several language groups, a singing group, bought a flute and am learning Salsa, amongst other things. I meet many people every week so I am unlikely to feel lonely.
My view is that we all have a limited life span and most people have no idea of how long they have got left, neither do we. What we do know is that if we live full lives, we will do many things that will extend our active lives. I love life and intend to get the best I can out of it for as long as possible.
Like Angiem, I too am a fighter. When I told the specialist that I would fight the disease, he gave me a doubtful look. Two years on I am able to do everything I have always done and maybe more.
I hope that helps.
Wow Ricky, what a great post, well done. I honestly hope I am strong enough to do the same as not crawl under a shell. Was thinking of maybe aqua aerobics and have done Zumba in the past so would like to ease back into that. But first the walking, my lungs have fallen out with me so need to get them back on side!! Could sleep all day if let myself and not at night so that is just feeling sorry for myself. Good luck with all your activities, sounds great. Take care x
Exercise in the day helps me sleep in the evening and/or at night. If I am going out in the evening, I watch something boring on TV in the afternoon so I fall asleep and recharge. I also do aqua, which was recommended by a good pulmonary nurse. I take myself to my limits, giving it a bit flair, while singing along to the music. The others probably think I am slightly mad, but it's more enjoyable and checks that you aren't working too hard. I also sing in Zumba. Beats the usual check of being able to recite a sentence while exercising.
Yes Flicky1, I have done no exercise since diagnosed eight days ago and hence letting myself feel even out of condition than normal. I had given up walking with friends as they walk fast and I was getting out of breath and didn't want to hold them back, find walking alone very boring. Do you need to stop and breath if can't recite a sentence, have not heard that before, thanks.
Yes, if you get too breathless to speak, I believe that you are working too hard. I am usually a bit hard of breathing when exercises, but that is the nature of the condition. After diagnosis I struggled with walking, after initially having to rest to recover after a nasty infection, but I perserved and am now back to my previous pace.
With the warmer weather coming, l will be walking more outside. I don't know if you already know, if you go out in cold weather you need to cover your mouth to protect your lungs from cold air. Been doing this all winter and have remained well.
What’s the scarf thing? Heard it before? Is it to stop pain? Infection?
Keeps the cold air out of your lungs, which can be painful and, as far as I understand it, can lead to an exacerbation. I have kept well this winter, unlike the last couple of years. Bought a nice warm tubeyt thing from Sports Direct for £8.99, which covers your lower face. Well worth the money.
PS I was talking to a physiotherapy senior lecturer this afternoon about the phrase you are supposed to say to check you're not overdoing - it is: "This is doing me good", but she thought that singing would be better as it is much more uplifting. What a dull phrase anyway - exercise as a duty!
Thanks for the tip about covering mouth, will always wear a scarf and you are right singing is definitely better and uplifting 😊
I wouldn’t pay too much attention to gp. Mine said at 40 my copd is severe and she doesn’t know how I’m functioning. Yet gave up cigs year ago. Drugs 8 month ago. Decided I ain’t going with out a fight..
Five miles every night on excersise bike ( easy level) and twenty mins weights.
Any one can do something to get fit. My first time i did 1/2 mile. Trust me the excersise is hard but breathing is easier after.
Please message me if u need. I’m bouncing around just like you
Thanks Andy, any input good. Seem to be obsessed with it at the moment, checking here and looking things up, taking over my days. Not sure if maintenance inhaler suiting me as get tightness in chest. Have done no exercise since so have to start even walking but nervous that lungs won’t take it. Walking diaster and not proud of how handling it as all around me know I’m constantly distracted. Anyway got that out of my system. You seem to be doing well with exercise and giving everything up, fair play. It won’t beat you.
I was diagnosed with emphysema almost 20 years ago. I'm commercial electrical foreman and stayed working for 10 years in the field before I went into the office and still work. I use oxygen 24/7 but life is still good. They told me if I didn't uit smoking I'd be dead in 5 years, if I did probably 10 years. It's not so bad really. I still work enjoy when my kids come over and play with my 2 year old grandson.
Shazza go back to ur gp and tell him about your rescue inhaler and other issurs uare having
It sounds like you ate amxious too
They can give iu something 4 that but only if u tell h or her
Doc opens at 10 so will phone and see if can get apt as am very anxious constantly. She is quite cold and doesn’t explain well and not sympathetic but will see how get on thanks.
I’d change gp. I’m going to after what mine said. I’m up and down like a rollercoaster but hey what u going to do. The only option is give up and that ain’t happening.
Hard to change GP, lots of paperwork but will think about it, they should be much more sympathetic and not send people home worrying about diagnosis to the point of panicking.
Yeah I’ve got paperwork to change surgery but not doing it till after see the consultant. I know my gap was just trying to demonstrate how serious it is but her bed side attitude sucked. Took me from quietly positive to suicidal overnight
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