Apology and thanks

I just need to apologise for my posts and it is not fair on everyone as you all have your own problems to deal with. Reading many peoples problems on here puts me to shame to be honest. When I re-read my posts I come across as a panic merchant. Trust me I am not. I had long chat with my family the other night and to be honest, I think we needed it. We have never actually sat together and discussed it. Have small chat with Chris then quick chat when we get together with my children in the kitchen........ not good enough. Skimming over things does not work. 10 weeks since diagnoses........... such a short time. Where my fear comes from is since diagnosis, my breathing has been awful. I have slept in bed 4 times as wake up gasping for breath and when I tell GP, I see different GP each time, they give me different inhalers. My family always tell me that I am the type of person that says right now we get on with it. I can only think, lack of sleep has done my head in.

Special thanks to

Tocci

King of the cocktails

longlungs

appyalison

tadaw

knitter

sassy59

take care xx

60 Replies

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  • Hi Twinks.

    There is no need to apologise for your posts. Of course you're going to be scared and apprehensive. As you said above it's only been 10 weeks since diagnosis. It takes a while to get your head round it.

    I posted a while ago, but it might have been on the old BLF site, about what I was like when first diagnosed I'll see if I can find it and post the link.

    Try to be as patient and caring of yourself, just as you would be if it was happening to one of your family instead.

    Carrie

  • Thank you carrieme. Would appreciate that. I hate that this makes me feel so self absorbed. Doesn't help when I ask doctorts & nurses............... I get real no answers. Take care and thank you x

  • No apology needed. Have you not seen a respiratory consultant? If not, press your GP and keep on pressing until it is arranged. Some GPs (and I am not saying yours) give asthma inhalers and never really get to grips with the difference between asthma and COPD. Don't be fobbed off. You have addressed it with your family now you need an accurate picture of what is going on. Even if you have a great GP your mind will be more settled by seeing a specialist. Good luck. xx

  • Thank you Toci. That's what added to the stress to be honest. When I asked to see Consultant to get proper diagnosis all surgery told me was that they would not refer me to Consultant until they could no longer manage my condition. Of course that made me feel that when they did refer me to Consultant that I would be too far gone. Played with my head. When I was diagnosed, I was given asthma inhalers and that put me more in denial to be honest............ thinking they got it wrong. Given 2 inhalers and sent on my way as I guess most of us were. Where my panic comes from is in those 10 weeks have suffered 2 infections and my lung function went down to 69% instead of 73% spo of course I will be worried. I work in Social Services and had to have sick certificates, never had them in all my 45 years of working and when I went for last one and explained how I don't sleep blah blah blah, GP said you look ok to me. Made me feel like a parasite. Luckily we say GP last week and Chris came with me and told her, honestly, how it was affecting our life............. she gave me sick cert for a month.......... when I was first diagnosed, I was given sick cert for a week!!! She has now referred me to Respiratory Consultant. I'm ok with that as not a 'panic merchant' * smiles * Love when I know what dealing with but hate being fobbed off. I've done it again................... made post war & peace xx

  • I am glad you got the referral, It should make all the difference. I know we constantly say it on here but consider the helpline. They are excellent and have time to listen. They are respiratory trained and know where you are coming from and can suggest what to say to GP, what to ask consultant, etc. If you GP proves difficult - get another! Many on here have done so and wished they had done it much earlier. And don't worry about the length of your posts. It is not an issue. Some of the most respected posters on here do long posts, though I won't embarrass them (or give them big heads!) by naming names. :)

    Your lung function is not too bad at the moment and don't worry too much as it can vary from reading to reading. Mine was 22 at point of diagnosis, rose to 30 when I stopped smoking and has declined again since then, but that has been over several years. Spiriva is the inhaler most people are given when COPD is diagnosed, though of course some change to different ones at a later date. Once they get you sorted out you should feel more positive.

    P.S. I also worked for Social Services.

  • healthunlocked.com/blf/post...

    One thing I didn't say on the original post was that a couple of months in I phoned the Helpline as I suddenly became aware of my own mortality and was very scared and weepy. They helped put everything into perspective. I'll be 60 shortly and there has been virtually no deterioration in the 5 years since diagnosis.

    Cx

  • That is so good to hear Carrieme. I will be 60 next March. 60? Wow where has that gone? Certainly don't feel it. Scared me that I had in deterioration in 10 weeks.

    Could that be the illness settling?

    Appreciate you giving me advice. Take care xx

  • It just takes them a while to work out the right medication to suit you. I'm now on Seretide 500, Spiriva, and Ventolin. I usually get a flare up at some time over the winter, but apart from that I very seldom have the chest pains that I used to. I still get breathless, but I now try and remember to take my time, I can't rush around like I used to. More tortoise than hare, now - however it's amazing how much more of life and the world you notice when not running from pillar to post.

  • That's true Carrie me, I enjoy really looking now.

  • When they diagnosed me end June/July.......... the heatwave just started so my breathing was awful. I know they are testing me out with inhalers and totally understand that. They put me on Qvar and Subotemal to start with. Now on Symbicort. Gp referred me to Consultant because she said she cannot understand why I am having these symptoms at moderate stage. I feel breathless sitting on sofa

  • You did the best thing, twinks, but coming on here and getting loads of good advice. Simply no good bottling it all up. I have read your posts and cant add much to what has been said. I just want to say good luck with everything. Love Annie xx

  • Thank you Annie. That means a lot. Hopr you are well xx

  • Twinks1954, I know exactly how you feel. I am 54 and I was diagnosed 2 years ago and went into complete denial. (I stopped smoking last year as people at work were commenting on how persistant my cough was and I was sometimes finding it difficult to talk on the phone due to my cough).

    However, on a walking holiday with my partner in August we went walking up Snowdon (yes, I said I was in denial!). I started getting breathless and feeling sick about a third of the way up. I managed half way but then I decided to go back down on my own (of course my partner didn't know I had COPD).

    When we got home, there was a letter for me advising me that my application for life insurance had been denied. What was I thinking?!

    Since then, I have finally had to realise that I have COPD. I looked on the internet, and as you have found, information is not entirely clear. I have felt dreadful this last month, depressed, unable to sleep or eat and completely on automatic pilot when I'm in work.

    I found this site and joined a month ago, a couple of weeks after the dreaded Snowdon incident. It is helping me a lot.

    Carrieme, I've just read your original post, bless you, that has really helped me, I hope it has hepled you too Twinks1954.

    Thank you all on this site xxx

  • Hi Poppyness, sounds a bit like me at the mo!...been struggling last few years...diognosed tues with copd!...had the test a few months back, but been too busy to go back to gp, thinking if anything was wrong, they would ring.....wrong!...gutted! Waiting for X-ray results now etc....still in shock.. You take care, Baz

  • ha mrbaz,dont hold your breath on em ringing,you will get heaps advice on hear,just ask anything ,someone will answer,what level are you im mod,bernice

  • Hi Bernice, that's the problem at mo!...not been told how bad it is yet....was up most of last night with it though!.. ;(

  • ha get back on to them its your life there chancing with,why you up all night,what with,bernice

  • Fat chance!... Lol ;)

  • Coughing with a chest like a culdrun!...hopefully tonight will be easier!...'fat chance' of any other 'action' lol ;)

  • Actually just re-read your post.....up all night what with Bernice?......oops! Lol

  • was referring to your nightly symptoms,of your ill health,bernice

  • I agree carrots. I would be lost without people on here

  • ha same as me,im learning from all of them,im mod but some days after work well ugh,still run and walk am not stopping that,bernice,

  • Sorry to hear that Mr Baz. So glad that you have found this site. Of course it has helped me.................... still is whilst I struggle with this diagnosis. What a site is all I can say.................. the strength and advice they give has been so much more than gp ever GP me. Now I have rehabilition course to start and would never have known if not for this site. Take care xx

  • Twinks, I think you will get a great deal out of the rehab course because I did today. xx

  • Carrotts, PR went well. I have made two comments already so wont repeat myself, but thanks for your interest. Think the posts were on chell's and longlungs posts.

  • ha all read them,keep well,bernicexx

  • Thanks twinks, take care too xx

  • I am so sorry to hear that. What was your reading? Sucks that we don't know what questions to ask.......... all a learning curve. Please stay with this site because I wouldn't know half the thing without them. I was diagnosed July '13. Dread to think if there was no site like this. Take care my friend

  • Oh MrBaz! I'll be thinking of you - keep in touch with this site, it really helps. I've been very much of a wallflower since I joined, but I know the people on here are lovely and it helps just knowing you're not on your own. You take care too xxx

  • You made the same mistake as me. I had the breathing test in July 09. I didn't go looking for my results until Feb 2010. I was then told I had moderate copd. I knew something was wrong but I was still smoking so decided to bury my head in the sand till I could do it no more and became ill.

  • Thank you Poppy. I haven't got over the denial yet. I know that. Had too many mixed messages. |Ah Snowdon................... love it well. Married a welsh man and we lived overlooking snowdon . Are you feeling better now? xx

  • Well Twinks, I still get a sick panic feeling in my tummy every now and again - almost as if I'm just realising what is happening, but I think I am now coming down to earth and hopefully ready to accept this. You lucky lady - overlooking Snowdon! Take care Twinks xxx

  • I know what you mean Poppy. My tummy does some weird and wonderful flips. Cant wait to get to the stage of acceptance. I don't overlook Snowden now. Overlook the Solent (Southampton) * smiles* xxx

  • twinks ,at 1st I didn't accept it/as was never a big smoker,had phenm 3 times different ages,other illnesses along the route,then told copd was like a smack in the face it was,but sfter I thought well/its not going to go away so ive adjusted to it,wish sometime I would wake up and think oh yeh but no,but now I wake up and think yeh its another dawn get on with it girl.thats what I aim to do,wont get wed cs of copd but still got to live,and I am,bernicexx

  • Love your spirit Carrotts xx

  • Hi Twinks. Poor your heart out ,we all need to do it at times and as is said 'It pays to talk'

    Sweet Dreams

    KOTC

    Your daily tonic

  • Twinks, please don't apologise. Being frightened, confused and not wanting to believe what is happening makes sense really. Who would want the fear, the waiting around, the prodding, the trying to get doctors to properly listen. If we tell our families how we feel, we are worried about worrying them. Sometimes it is hard to be positive but we are because the alternative helps no one. Since finding everyone here I feel better in myself, less lonely and scared but i know if Ihave a melt down or need a moan, someone will help. Having a laugh with each other is also important because nerves dissolve with the smiles. I wish you well and hope to hear about you progress. Good luck. :-) :-) Alison

  • Thank you Alison and King of cocktails. On happier note. My wee daughter Natalie is on holiday on Keftalonia (Greek Island). She went there last Sunday with her boyfriend. Well Richard proposed on the sunday. I am so happy for them. They have been together 18 months and prior to that Natalie was in 8 year relationship which ended 2 years ago and her wee heart was broken. Do any of you remember you first broken heart? How intense was it back then? I remember mine............. Billy Babes. Yep that was his name and I was 17. Natalie just phoned me a minute ago............. she tries to take on my Scottish accent.............. och wee mammy she says. She phoned me last sunday when Richard proposed and her wee voice was all shakey and happy. Bubble wrap those moments.

  • Don't apologise I was exactly the same when I was first diagnosed 18 months ago, terrified sums up how I felt. But then slowly things get sorted. I saw a consultant so got a clear diagnosis, then I was put on a PR course which was brilliant. And the best thing was finding this site, the doctors might understand the medical side but everyone on here understands how it really feels so we help each other.

    You will get used to it and learn you just have to adjust your life a little.

    Good luck

    Kim xxxx

  • Thank you Kimmy. It's fear of the unknown I guess and not being fully armed with the knowledge to deal with it. What enforced the denial for me was that blood tests and 2 chest x rays came back clear. That made me think my breathing problems was something else as I thought x ray would have showed something. Thankfully I start PR next Friday and hear good things about that and cant wait to go. Now waiting to see Consultant and once he finds out what is wrong, I will be more accepting of it and get on with it. Have wondered why people who are at same stage are on different and maybe 2/3 inhalers. I'm now on Symbicort 200/6 and ventolin. Take care Kimmy xx

  • No need to apologies, a lot of people have all sorts of conditions and it is a case of trying to live with it and not let it rule you. I have found on these forums there is always good advice from like minded people. My father was diagnosed with leukaemia when he was 50 as far as my mother was concerned that was it he was going to die not long after. He managed to keep going to 84.

    I have fell off a roof, knocked my self out on the bottom of a swimming pool, was thrown out of a car on its first roll and it went over 3 times and I was still past the car when I got up. Had a heart attack while driving, My wife was told twice I was not going to survive the night while I was in a coma with my lungs. My outlook has changed but never keep your concerns to your self.

  • Thank you Offcut. You have been through a lot and still here to tell the tale and no doubt a stronger person for it. It's thanks to this site and great people like yourself that I have found out the things I need to know i.e. PR - so asked GP for it and start next Friday. GP certainly didn't tell me and I would never had known. Many thanks again to you and keep well

  • Hello from me too. I am always amazed that the treatment we get from our GPs can have a huge impact on how we deal with diagnosis.

    I was diagnosed after I had given up smoking as I didn't have any symptoms whilst I smoked. My GP is a COPD specialist and has his own dedicated respiratory nurse. I had all the tests and x rays done straight away at the surgery, he explained all about it to me and stressed that it was not a death sentence.

    He encouraged me to increase my fitness and I now go to a gym as others on this site do, and explained how important exercise was.

    As a result, I left armed with the medications I needed (spiriva, seretide 500 and ventolin) and with an attitude of feeling more positive. I have regular check ups with him or the nurse and have not got any worse through doing all the things he suggested.

    I am very lucky compared to the experiences of some of you.

    Lynne xx

  • Hello there Lynne and yes I agree that it does make a big difference how it is all explained to you. I was given ventolin and sent on my merry way. I was unlucky to be hit by 2 infections in a 4 week period and had 2 lots of antibiotics and steroid pills. My FEV1 was 73% and nurse had me back for another reading after my infections and it was 69%. That worried me but I now read that shouldn't have spirometry so soon after meds. Sure hope it hasn't gone down that much in so short a time.

    Have you had another spirometry since diagnosis Lynne?

    Must up my exercise as its the way to go.

    Take care xx

  • Yes and another due in October. No change since I was diagnosed.

  • That is brilliant news Lynne. Gives me and others hope xx

  • Hi thank you for the aknowledgement... glad I have been of some help.

    Its just a query about the Ventolin, I am one of the people who sadly it seems that Ventolin and Bricanyl seem to make my chest tighter and breathing more difficult if I take them for more than a few days. But then I need a reliever to open my lungs and a vicious circle starts.

    I don't know if anyone else has the same difficulty.

    Don't worry about your posts...this is the place to discuss your worries and get help to go forward.

  • I feel the ventolin does nothing for me and even questioned if it was making me breathless. What inhalers help you most Knitter? Take care

  • The Ventolin (and Brycanil) made my breathing worse. Most of us COPDers start out on Spiriva, and Seretide, though quite a few are moving off Spiriva onto newer long acting medications because of the costs.

  • One of the hardest things that I had to face when I was first diagnosed was "COPD". To me, that was a phrase that meant I had brought it on myself. I was quite happy whilst everyone said I had Asthma but COPD was a different ball game. Yes, I know I smoked and had smoked since I was 16 but the difference to me came about by dust. Dust was my downfall but could I say that I had COPD, could I Bob. Things are different know. People say that is smoking related but I also know that my work has contributed just as much to my condition as smoking. Strange how hard we can be on ourselves at times for no reason.

  • Totally understand that Brian. I felt so ashamed and also that I let my family down. Only told a couple of people outside of the family that I have COPD and first thing they say is.......... Is that due to your smoking? From now on I am going to have no qualms in saying yes it is. COPD is hidden too much and people need to be aware of risks and maybe things will then change.

    Yes Brian its not just through smoking. Did you work in dusty environment? Hope you keep well

  • twinks,its not all down to smoking,illnesses alng the way damages lungs to,plus work places,but simple answer of the meds you smoke,2 of my friends are severe copd,did they smoke.no never,i smoked a pack of 20 lasted me 3week,loads of peeps smoke 60 daily,nothing happens to them,ive got copd and really couldn't give a rats ar,e who nos,stop worrying that makes it worse for you,please,ps you out tonite,bernicexx

  • atsjournals.org/doi/full/10...

    [Quote] A classical quote from the U.S. Surgeon General Reports is that “90% of COPD can be attributed to smoking”. However, recent studies have reduced these estimates to 44–45% only [worldwide], and it is now suggested that, even in developed countries, cigarette smoking causes COPD in only 50–70% of patients. [/Quote]

  • Absolutely Carrotts but I am pretty sure it was down to smoking in my case. Have you managed to give up the cigs now? xx

  • twinks give em up on the spot 18 month now,never bothered,just few sweats and shakes but 3week was fine,only ever had 1 pack lasted me 3week,then another pack and so on,was not a big smoker, I laugh as I get stopped loads time,excs have you a light reply no store there,as 1 said I,ll never light up again if I was on fire,bernicex

  • goldcopd.it/materiale/gr_la...

    [Quote] . . . Unlike previous NHANES studies, NHANES III diagnosed COPD from postbronchodilator spirometry ... Findings from the study also suggested that a quarter of COPD cases in the USA were in never-smokers, which was supported by similar proportions in the UK (22·9%) and Spain (23·4%). . . .

    . . . In NHANES III, Behrendt identified several occupations that were associated with high prevalence of COPD: plastic, textile, rubber, and leather manufacture; transportation and trucking; manufacture of food products; automotive repair; and some personal services (eg, beauty care). The proportion of patients with COPD attributable to occupation was about 19% overall and 31% in never-smokers. . . .

    . . .. Non-smoking causes of COPD were conventionally estimated to contribute to a small proportion —10–15%—of cases in developed countries, but results of later studies suggest that the true contribution is much higher. Findings from the Swedish OLIN and US NHANES III studies reported that the population-attributable risk of COPD from smoking was 45% and 44%, respectively, indicating that more than half of COPD cases were due to non-smoking causes. [/Quote]

  • cdc.gov/mmwr/preview/mmwrht...

    [Quote]For this report, we defined COPD as including chronic bronchitis and emphysema when we used survey data based on clinical diagnosis. In doing so, asthma and bronchiectasis were excluded . . .

    . . . NHANES III was conducted during 1988--1994. Subjects were asked, "Has a doctor ever told you that you had chronic bronchitis;" "Has a doctor ever told you that you had emphysema;" and "Do you still have chronic bronchitis?" Subjects were regarded as having COPD if they reported a diagnosis of emphysema or current chronic bronchitis. . . . [/Quote]

  • Of course tobacco smoking is a major risk factor for COPD, but do you want to argue it's the only RF?

  • Wow twinks you have generated a lot of replies! Don't you go apologising because you have no need to. Everyone has their ups and downs and this site is so good at getting everything in perspective. I hope that things improve just as soon as your meds are right. You have a good family and they offer love and support plus you have everyone on here too. Take heart and hear from you soon. Lots of love, Carole xxxx

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