Dear everybody - I am here to offload - forgive the (possible) long post.
I was diagnosed, a year ago, with moderate copd. I have coped well - not having much in the way of exacerbations and able to go about my usual daily routine, with only occasional SOB. It has, however, been a difficult year. Firstly, by an unlucky fluke, last June, I caught my husband's cold and this developed into SOB and a lowering of my oxygen sats - a day before we were due to fly to Greece! Medication (antibiotics) given to me by my GP, seemed to exacerbate the SOB, rather than make it better! Anyway, we had to cancel our holiday. My GP then rather bullied me into 'giving up smoking', by putting on my records that I was not to travel for a year after giving up. Thus I cannot get travel insurance for subsequent holidays. Then my father contracted pneumonia and died in hospital. But even through all of this, I have kept reasonably well, apart from a slight flare-up a few weeks ago, after a trip to a wedding (everybody seemed to come away from that with either a cold or throat infection!) I was more SOB and was coughing up loads of (white) phlegm, so I took ABs as a precaution and am fine now. Or so I thought.
I went for my yearly check last Tuesday, confident that my condition had not deteriorated - in fact, I hoped it might have improved slightly, as I felt well, was exercising regularly, without distress, my O2 sats were reading 96-97 and I had cut back on my smoking (I was taking it slowly due to my underlying anxiety and because I am prone to depression). BUT, according to the spyrometry test (which I really struggle with - cannot blow out with my mouth open), I have dropped around 10%, to 42% FEV1 and am now classed as 'severe'. I was devastated. The nurse did not seem overly concerned - said it was 'just numbers' and she went more on the fact that I had not suffered much by way of exacerbations, my oxygen levels were good - and that my exercise capacity was good. She said that she thought the drop was partly due to my having not given up smoking and partly because it was only 2 weeks since I had stopped antibiotics. She told me to just continue as I was doing - with lots of exercise and trying to stop the smoking.
I have been in complete turmoil ever since. I am so anxious and I cannot sleep. Despite that I feel no worse than I have done for years, I see a terrifying downward spiral and imminent death! I am in such a state and terribly depressed. What's more, I am panicking to give up smoking - and hating myself for my failure to do so. I have bought several ecigs and I am struggling to get on with any of them - and, because of the high anxiety, I am possibly smoking more rather than less! I just don't know what to do, or what to think. My poor husband is distressed seeing me this way and I feel bad putting him through all this.
Any advise on how to cope with these feelings would be most gratefully received.
Many thanks
Frankie
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frankie42
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Hi there Frankie I seem to remember your post from about a year ago. Others will come on and confirm what your nurse has said, don't worry about the numbers it is more important how you feel. People with the same numbers can feel quite differently affected. And, your nurse may also be right that the decline may only be an apparent decline because of your recent infection. But please try and give up the smoking, but stop beating yourself up over what has been: you cannot change it anymore. Set yourself a goal: stop tomorrow or decrease one each day or whatever you can do. It may also be useful to see your GP to get a mild form of antidepressant to take for a few months to help you get over the giving up. Those antidepressants are non-addictive and help lots of members on here. Great to hear that you are exercising and keeping well- continue with that. Get the pneumonia vaccination and flu shot each year and avoid getting colds at all costs: wash hands, use handgel, use home remedies, boost immune system, use Vicks First Defence. Stay happy and healthy. Good luckxxx
Thank you, jenss, for your reply. It's calmed me slightly - thanks!
I've realised that I must CALM DOWN and approach giving up smoking calmly - not in a panic - or I will achieve nothing! I was (and still am) hoping to replace cigarettes with ecigs - and know that many on here have succeeded that way. Does anybody have any recommendations on ecigs? I smoke Marlboro Gold (low nicotine) - but the low nicotine ecigs don't seem to so anything for me. I'll persevere - but if I fail with ecigs, I will have to revert to patches *sigh*
Can you tell me what antidepressant people have used? I have had no success with them in the past - a long time ago - perhaps this is a new one? I feel that I need something, as it's not the COPD that's making me ill (at present) - but the flippin' anxiety! I've been knocking myself out with an extra glass of wine. Ridiculous, because I go off for a couple hours, then wake up and spend the rest of the night going over and over all the negative thoughts!
Yep, I had the flu jab and the pneumonia jab and I am very careful to try to avoid people with colds - and I do at least 3 km on an exercise bike daily as well as other exercises with weights. When I do get breathless - it is at odd times - it just creeps up on me and is not generally associated with exercise or anything in particular. And this breathlessness (apart from when I get an infection) is no worse and no more frequent than it has been for at least ten years! Strange!
Its the negative thoughts that you need to fix.....it sounds simple but you just have to stop them and with patience and practice you can.....every time i have a negative thought i can feel it in the pit of my stomach so thats clearly telling my body im making it feel bad....every time i feel that sensation i stop what im thinking of and think of anything at all thats positive or happy or funny.....it takes a bit of time but when you get use to doing it it gets easier and i rarely get that anymore....
as for your smoking please dont beat yourself up over it there are a lot of people who struggle i was telling someone on here the other day its easy to pack in smoking ive done it 5 times...its staying off them thats the hardest...if you stop smoking it can slow down or even settle things .....i would suggest the new vype e cigs that are advertised on tv...lloyds pharmacy have them on offer or they did they were under 20 pound if its the taste of the cigarette you miss then get the tobacco blend its the closest thing to a cigarette you will find in my opinion ....they are also on sale online x
Thanks, Mandy - I will have a look at those ecigs. (I'm worried about getting too strong nicotine - and worried about not getting strong enough .... worry, worry, worry)
Negative thoughts. Here's an example of mine. (My father left us a substantial sum of money - although we don't have it yet - been waiting for probate to go through and the completion of the house sale). We love to travel - but I can't go anywhere, because I can't get insurance - and, despite that my oxygen levels are absolutely fine, I would be afraid to risk flying anyway. So that's out. We planned to do a few things to the house - including a conservatory, where I can hide away for a bit of peace from the endless TV football and write (I try to write books, anyway!) - but, I think, what's the point. What's the point in anything, I think. Then I think, DON'T BE SO SELFISH - others would like these things. Then I think, perhaps, instead, we should spend some money on a downstairs loo and a car that'll take a mobility scooter, which I may need in the future. And then I think, DON'T BE SO SELFISH - and, that would be a waste of money as I wouldn't be around long enough to justify the money spent. And then I think, 'what's the point of ANYTHING!' LOL!
Excellent reply. I can relate to the negative thinking. I am having some issues with my job and my daughter. Totally effecting my stomach. I can hardly eat. Maybe releasing to much acid from my nerves.
Get on the high potency e cigs! 21 mg cartomisers at least. They give the required kick which is what you're missing. Most are 16 or 19 mg. 10 Motives (google it) do it online...Bob
Hi Frankie, good to hear that you are feeling a bit better about it all. With regards to the antidepressant, my dr had given me Endep and I took it for about 6 months and it really helped me. But talk to your dr they may recommended another one for you: they are just taken in low dose and not addictive. I wish you all the bestxxx
Hi Frankie I agree with the others. I wouldn't worry too much about numbers as it's how you feel which is important. And don't forget your lung function test can vary by quite a few points at any given time. I bet if you had one done now you will be higher than the one before. Keep on with the exercising and trying to stop smoking.
There are many folk on here with lower lung functions than yours who are still working and leading a relatively active life so please don't worry too much as I am sure you have many years ahead of you yet! x
Thanks, phillips, will take a look. At the moment, I've been (trying) using a UKECIGSTORE contraption (in Everton blue) which you have to keep the button pressed on and sends sparks into my mouth and jangles my teeth!! I got this one so that I could mix the liquids - so, currently, I have half 0% nicotine and half 6% nicotine in it - which absolutely clearly isn't strong enough - as puffing on it (carefully, so as to avoid electrocution - the thing scares me!) only makes me want to light up a real one! And it makes me cough! And it tastes absolutely vile!
You have had such great advice on here Frankie and I just want to wish you well and hope that you can come through this and live your life to the full. Your cup needs to be half full, not half empty and you will get there. Try and stay strong. Thinking of you. xxxxx
Hi Frankie, you sound so like me 18 months ago. I worried more because I couldn't stop smoking, then I would think, what's the point anyway. I couldn't eat, couldn't sleep. I felt at rock bottom.
I'd tried ecigs but it just didn't taste like real baccy. I tried patches, everything. In the end I knew I was never going to do it, until I could calm down. Eventually, I started with severe panic attacks that would last all day, till teatime.
Finally, I went to my Dr and and he gave me an antidepressant. It took a couple of weeks but the feeling of relief as the anxiety eased, was wonderful.
I had already started to cut my smoking down. I found a recommendation for a different ecig liquid from a poster on here called Totally Wicked. I got 3mg of tobacco flavour. I cut the cigs down to 3 a day using that and by the 4th day, I realised, I couldn't tell the difference. That was feb 2014.
You will stop smoking, but you need to get help with your emotional health first. When you feel calmer, you'll feel much more positive. Stop beating yourself up about everything. Find something to occupy your mind,play computer games, read, go for walks, just sloooow everything down. Every morning, decide to concentrate on that day only and don't allow yourself to think about the future.
Don't sit and stew on things that are worrying you, keep coming on here to voice your fears. That will also help you to worry less about upsetting your husband. We'll help you get through it Frankie and you will. xx
Firstly, WELL DONE on giving up. I'm so glad you found something that helped you. Yes, you are describing me almost perfectly. I think I've been in a state of shock over the last week (I was in some sort of 'denial' before that, I think). I definitely do need to sort out my head and I may well go to the GP for some medication (I just wish GP of many years hadn't recently retired - he would've sort me!) Meantime, I'll continue going the rounds of the ecigs! Thanks for the suggestion. I actually do have one of the Totally Wicked ecigs at home already, which I haven't tried yet.
You're putting yourself under a lot of self induced pressure by the sound of it, you're quite involved with all of your levels and figures. By the sound of it you are struggling because you are trying to treat symptoms rather than cause.
Yep, you're probably right! But the cause is the cigarettes and I'm trying to to get myself in the right frame of mind to fight the battle. I think half the problem is that I currently have very little by way of symptoms, thus my possible 'denial' - but the figures woke me up!
It sounds like you are putting your self under a lot of self induced pressure and concerning yourself with figures and stats is focusing you on treating the effect and stopping you from treating the cause.
Reading your post I think the absolute biggest problem in your life at the moment is quitting or the thought of it. Been there done that and know exactly how you feel. From my experience....you either smoke or you don't. I fail to see the purpose of "props" because its still in your mind and so is the relevant anxiety that goes with it. No one enjoyed a cigarette more than I did, geez I could even smoke in the shower (ashamed to say that now) But years before I was told I had emphysema (found accidentally on a CT Scan) I KNEW I needed to stop smoking. I liken the affects of smoking to sun damage. It sneaks up on us over many years but we KNOW.....some moreso than others. It takes longer to get over colds and infections, sneaky little cough. Tight in the chest at times. Knocked up during exercise. Although my lifestyle wasn't really affected I KNEW and I tried many, many times to quit. I spent a fortune on patches over the years. Only to rip them off and have a cigarette. The urge would always win. Till the day (following surgery) I was told I had cancer that had not spread and the chances of it recurring were minimal. Then in the next breath be told ah but you have emphysema. Now that can't be fixed BUT if you stop smoking hopefully it will not progress. I stopped from that life changing moment. That was in June 2013. It was tough (anything worth having can be tough to obtain) Not only did I have nicotine withdrawals but my ovaries had been taken out on the same day so all sorts of things were happening. My point is for years not only was I trying unsuccessfully to stop smoking I had constant sometimes low level other times over the top anxiety because I knew I needed to. Its a vicious, vicious circle. Your not just destroying your well being with smoking but also with anxiety. You read all this stuff about how hard it is to stop...how nicotine addiction is worse than heroin addiction....I sometimes wonder if one of the companies who sell quit products/ props was behind that hype. Its hard for the first few days and for months all you want to do is suck back on a fag but it won't kill you and the thought and the urge is gone within minutes. trust me if you just bite the bullet and do it after a few days you will be on track to feeling better and you will have a sense of achievement and your anxiety will cease! You will wonder why you stuffed around beating yourself up for so long. Suz x
Oh yes, I've known for years I should give up ... and, yes, I've tried the lot of 'props' over the years. I did manage, just over 10 years ago, to cut back from 40 a day to 10, overnight, using Nicorette inhaler - and that amount hasn't crept up too much since (though it's creeping up now!!) So the prop did work for me. I just wish I'd gone the whole hog back then.
You're very right, I am very anxious about giving up - especially now that I know that I MUST - but I'm not anxious because I've read about the symptoms of withdrawal, but because I know that there is a very real anxiety lurking and that the nicotine is holding it back. I spent 20 years agoraphobic - and 17 of those years addicted to benzodiazepines that took me 3 years to withdraw from (I believe that that is a harder addiction to beat than heroin!) To be honest, I would sooner be dead than return to being like that. But I will try my darndest to quit those evil weeds (I hate every one I smoke now, which is a good sign) - but I would be silly to ignore my mental health.
My poor husband has just retired and I owe it to him to be good company for him - he would hate for me to be as I once was again. Incidentally, he is also puffing away on an ecig and doing much better than me! He is doing it for me and has cut back a lot on his rollies. We will do this together - but I do think that casper is right and that I must see to my emotional health as well as my physical.
Thanks - you make a lot of sense and I am very glad that you managed to quit. Wish me luck!
I wish you every luck in the world my friend!!!! I hope I didn't sound like I wasn't sympathetic. As I most certainly am. But I was trying to let you know from my experience that the anxiety is WORSE while ever your thinking about or trying to quit with what I call "props" That if you can dig deep and get the RIGHT mind set and just NOT smoke the anxiety will GO very quickly. It will be replaced with a sense of well being and accomplishment. If you can stop smoking you can do anything. And its not that hard, all you have to do is not put one to your mouth. I would much rather put up with the urge to suck and inhale than be faced with a God awful struggle to breath. And if that day comes I would hope I have given myself years of quality beforehand by quitting. My feelings on what I refer to as props is that your replacing one habit with another. You still have that low level anxiety because your continually thinking about it whereas if you quit you quit....within days its gone. Your not reaching for the hand to mouth habit. Your not anxious about it your actually quietly proud! We have so much in common Frankie. I to was agoraphobic for 10 years. Many days I wouldn't venture as far as the letter box! So looking back I feel much of my early 20's through to early 30's was wasted! I was the queen of panic attacks so there I also know how you feel! One has to experience panic to have empathy. I have friends who just really couldnt imagine how it feels to feel panic! The flight or fight response in all its glory. Your precious, be kind to yourself and if I can help just let me know. Hugs Suz x
Oh, no - I did not think you were unsympathetic at all - in fact, I agree with everything you say! I didn't use the nicotine inhaler after the first day or two (gave me indigestion!) - or, only on long haul flights! And I tried a patch once (!) and threw it off disgust, swearing that that particular patch had no nicotine in it whatsoever! I burst into tears and lit a cigarette! And I agree that the manufacturers of NRT and ecigs are making profit out of others' misery and that replacing one form of nicotine for another is not ideal. However, I think I might need a prop to get me started!!
My late father had no time for me and my 'all in the head nonsense'! In his later years, he would say how unwell he felt and that nobody understood. He would then reel off a list of symptoms and I would tell him it was anxiety and he would poo-hoo that, along with any suggestion that he might be a little depressed! And I recall that when I owned up to my benzo addiction at my workplace, they treated me with utter contempt and I eventually handed in my notice to save what was left of my sanity. I later discovered that my boss kept a bottle of valium in his desk drawer!
I've found the best way to tackle anxiety is to boost my self-esteem. I did 2 x degrees with the OU while in my 50's - did me the world of good! Giving up smoking would, I'm sure, give a similar boost and be extremely beneficial in so many ways (I could even do with putting on a couple pounds in weight!) Hopefully, I'll eventually succeed as you did. I've often said that the only way I could give up smoking would be to be stranded on Lundy Island or somewhere similar for a couple weeks on my own - but I would miss my cat too much!
I really appreciate your words and offers of help, Suz - thanks! xx
Hi Frankie, you've received a lot of good advice so all I wanted to say was...good on you for posting... sometimes sharing halves the battle and knowing that people are here to listen and send u smiles, hugs and kisses is always really nice. Take care of yourself, take baby steps and reward yourself
Good morning Frankie, Don't beat yourself up about all the problems you are facing, Speak to your doctor and get a mild anti-depressant, As far as I know COPD can be managed and people live for many years with it, Of course smoking is extremely bad for you, I am sure you will achieve in giving it up and you will be so pleased, it will certainly cheer you up, Good luck, One day at a time Frankie, Eveyone on this site will be right behind you,and give you loads of good advice, Best wishes, Bulpit,
I read recently that omega 3 is good for treating depression. You might want to look into it.
Re the smoking...my other half, who I met 6 years ago, was a 60 a day man. He knew I hated it and tried various means to quit. What has worked for him are those small tobacco pouches that he places inside his upper lip. I know it's still tobacco but it's not being inhaled into his lungs. He feels much healthier now and doesn't reek of fags. There are probably health risks associated with them but for now it's broken the smoking cycle. You can't buy them in this country (UK) and he orders them from Sweden.
Re your feelings of breathlessness, it could have something to do with the air quality. I struggle with humidity.
I can't thank you enough for all your replies to my sobbing post. I am feeling sooooooooooooo much better than yesterday! I still woke too early this morning, but instead of laying there thinking negative thoughts, I was thinking through possible characters and plots (for a book I've already written, but not happy with!) and running through the itinerary for our holiday to Ireland in June (fingers crossed we make this trip, unlike last year's - but must keep positive!)
I will take all your suggestions on board and I thank you for all of them.
notlocal - I am confused about the ecigs. I was going for the lowest possible strengths, because I smoke low nicotine cigarettes. I didn't want to get myself 'wired' with high nicotine - but I will give higher a go - thanks!
Good morning Frankie. I'm so glad your feeling a bit brighter this morning. I found the coming of spring helped me enormously. The sun always has a huge effect on my mood. I took a lot of short walks, went into to the town centre more, (No Smoking.)
I calmed the anxiety over stopping smoking down by telling myself, I could have one if I felt really desperate. It took the fear off and made me more confident I could do it. I intended to do it over 3 weeks but, 4 days, and I was off them.
You'll do it, as long as you stop making it a desperate battle. As soon as you get used to the ecig more than the real one your nearly there.
I used to smoke the moment I opened my eyes so, I'd made myself wait longer in the morning to break the habit.
I got down to where I allowed myself one in the morning one at teatime and one for bed. The bedtime one was pure luxury and I thought I'd never be able to break it but, on the 4th night, I realised, I didn't enjoy it as much as I expected to and I knew, that was it.
What a lovely, supportive husband you've got. you'll do it - together. xx
Yes, the sun is always most welcome (I also suffer with SAD so just thawing out now!), though it could be the lighter mornings that are waking me up early!
We haven't smoked in the house for over 10 years, so there are no ciggie smells in the house, apart from ourselves! But I am in the habit of 'going outside for some fresh air' so often, that I think I'll have to take up pruning or something to replace the cigarettes (or ecig, which also aren't allowed in the house!!) We have a son living with us and he has never smoked (nor has our other son), for which I'm very grateful. I just hope we didn't cause harm to them with our habit.
I've just stood up and made a 3-meal batch of spaghetti sauce - lasagne tonight! First though, I must get on my bike for a few kilometres!
I'll continue to try out the different ecigs and try to find 'the' one - hopefully, I'll be as successful as you were - but, you're right, I must stop making it a desperate battle. Will report back with progress (or lack of).
Oh Lordy Frankie, just chill a bit! Your nurse is right - they;re just figures and figures won't kill you Am I right in thinking you are a creative and hyperactive person? Now, for what it's worth, I'm a 60+ year smoker, switched to e-cigs five years ago and never looked back and certainly never regretted it. I have a lovely guy who sorts my garden, has emphysema, smoked 60 rollies a day. He tried hard to use store-bought lookalikes and they all failed, so "e-cigs are useless". To my delight he turned up a week ago grinning from ear to ear. He'd gone to a reputable bricks and mortar shop (he's not got a computer) and they advised him on what mod and what strength juice to use and he's now down to 2 rollies a day, one in the morning and one at night. What really made me smile is that he's vaping banana, strawberry and a bottle of lemon on standby. As far from tobacco as it gets. Please remember the old adage - we smoke for the nicotine but die from the tar - there is no tar in your e-cig and nicotine is proving to be something of a woonder-drug. It cannot harm you in the strengths found in e-liquid. Now calm down, you know it makes sense!! Good luck dear & onward and upward!
LOL Dragonmum - I love that the garden guy has gone all 'fruity'!! Good luck to him!
'Creative and hyperactive'?? Certainly 'yes' to the second one (I'm also a Virgo and a perfectionist!) - not sure about the creative bit. I can't draw for toffees, but do like to 'scrapbook'. If you want to check out if I am 'creative' and you have an e-reader, you can download a short novel of mine (self-published!) for free from Amazon - I think today is the last day for the free download. Just look up Jane E. Frances!! There's a story behind this writing lark! About ten years ago, I did a geology degree. I was hopeless at science at school, so really wanted to test myself. After a lot of struggle, I came out with a 2.1 honours, which I was delighted with. When I told my brother, he accused me of showing off (he had a 2.2 degree), but then added that a BA was far more difficult to get than a BSc!! So, of course, I took the bait and did a BA - and got a First - lolol!! I did that degree in children's literature and creative writing - thus the efforts to put my learning to the test! The book up on Amazon at the moment is what I would describe as a 'yarn'. The one I'm editing now is a very weird sci-fi-type-thingie!
I am much calmer today - thank you for your calming and encouraging words. xx
Sorry you are feeling low - but you really should be looking at this another way - look how you were before you got these new figures - you were doing great and coping well - so given that the figure is showing lower than last year - YOU WERE DOING GREAT - despite that - so well done on coping so well - pat on the back - now it does seem a real pity to let these silly figures put you on such a downer - whatever happens in the future, your future - our futures the one thing we can do is try and learn how to cope with it - to cope the best we can - and YOU WERE DOING SO WELL (AND CAN AGAIN) - so put the figures aside, pat yourself on the back again and get back to how and who you were. Re the smoking do not beat yourself up it took me a year to the day from being admitted to hospital to actually giving up - you will know when it is right for you - I did it with ecigs and still use them but reckon they are better for me than smoking and this way I still get to enjoy my nicotine (I was a very heavy smoker) I use 18mg strength and that suits me fine. Again well done - you have already proved you can do well and cope well even on this lower reading so well done - take a bow and take care xxx
Thanks, undine. I'd had a few 'fraught' weeks and I think it all caught up on me and the dip in FEV1 was the final straw that made me crack! Started with a spot on my gum, I feared was cancer and was afraid to go to see about. It was actually onlt a bit of shattered bone, from a past extraction, working its way out. Then I got the throat infection that turned to a chest infection, for which I took the ABs. Then I had to go back to the dentist, because one of my bottom, front teeth broke off! Then I banged my head (hard) on the boiler, while standing up from clearing the cat's litter tray. That worried me so much, that after 3 days, I went up to A&E, who gave me the all clear! Then the cat had an infection from a tick bite ...... oh, it goes on and on!!
From my own experience your FEV1 can very pretty significantly both throughout the day and day to day so that could be why the nurse did not seem that concerned. I don't know if use inhalers or if you had used an inhaler prior to the spirometry as that can make quite a difference in your results as well.
From reading I have done they are working on a new way to classify people with COPD to take into account how well they function and what they can do before becoming short of breath as it seems there are people that are severe that can function better than some that are moderate so down the road you may not be considered severe even if your FEV1 doesn't actually change.
I know actually hearing the numbers that classify you in a group that doesn't seem to fit how you feel can certainly be concerning but pay more attention to how you feel and your quality of life that you still have. Of course it is always easy to tell someone else not to worry or be depressed as it really does more harm that good but it is different when it is you yourself so try to stay positive and stay as active as possible.
This sounds very encouraging, jackdup - thanks. I will try to remain as positive and active as possible. I'm overwhelmed by the kind and informative posts from all of you on here. xx
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