Just wanted to throw this into the mix to see what people think. Talking about smoking and COPD and how the best thing you can do is stop which will prolong your life expectancy. Without being too melodramatic, is prolonging this life a good thing. I know we all have personal reasons and family etc but do we all want to prolong this sort. Of existence. Now I am still able to get to the bathroom and make a cup of tea but my abilities are diminishing. I am looking at some sort of care (live alone) and although I am in no way depressed or suicidal I wonder how much worse it can get and whether I will want to carry on.
What's the verdict.
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Eve3066
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That's a tough one Eve but I suppose it does depend on your outlook on life and your positive mental attitude too. Living alone can be a bit isolating and depressing for some yet others lead fairly full lives, so far as they can with copd etc. Everyone will have a different point of view and you may get to read some on here.
I care for Pete (sarcoidosis and copd) and am so pleased that he is happy to be alive. His ongoing back problems are debilitating and depressing but we try and get through as best we can. Take care and wishing you well. xxxx
I agree with Sassy. It is a very personal subject. As a retired nurse, I hated to see patients suffer but of course with the proper pain control, life can be made much easier for them. I think as we get older we do think about healthier times and give a sigh, but times move on!!
But as I have said, it is very personal. Some people wonder what is the point of living and possibly for them, they are right. I think religion can play a part for some folk and give them comfort. I am upfront and dont know what I believe in - honesty is my policy. There has been talk of Buddhism and meditation which can give people peace of mind. I do believe that life has been planned for you and deal with what happens. XXX
Morning eve, this is a toughy, for me personally I find this illness very depressing and hard when unwell and always think to myself I can't cope with years of this, then there's the other side, I want to live aslong as poss for my hubby and kids......but....... I don't want them to see me gasping for breath in the final stages either. So, somewhere in the middle will do me , let my kids be at an age where they will cry and grieve but can manage with their lives ( I have 2 still school age ) but take me b4 I can no longer do anything for myself, why are things like this so much easier in ur head but when u write it down it don't sound right. Oh well, suppose what I'm trying to say is I don't want my kids to see me suffer horribly so no I don't want to prolong my life after that. Hope this makes sense lol. X Sonia x
Hi Eve, this is such an anguishing thought.... It's really tough!!!!
I come from being a full time carer of a wonderful man who has now died.
Everyday he amazed me with his courage and strength that held me up and our 5 adult children,(they are scattered round the UK and abroad.
We were, and l am now, fortunate to have church support and a good G.p.
In the middle of this l found BLF.
It's been my best and continues to be so, particularly early am and evenings.
I'm aware that you are on your own, and hope you have support, whether friends, or the professionals( nurse,gp,specialists,support groups like here.
Do use all the resources available.
Take care Eve and do stay on this site,the folk here come from a lot of different backgrounds, but there is much in common through different lung conditions.xxxxxx
Don't worry, there are lots of things they cando to help you and you can help yourself by being knowledgable about what's wrong with you and what works and what doesn't. You will be ok.
wow now thats an emotive subject and all i can say is for me i can get up one day and think i dont want to spend another day like this and by dinner time think its not so bad and to be honest i wrote a really long message to put on here and deleted it all because i just cant look ahead its too hard
Well I am gratified by the responses, some of us really want to carry on regardless and others not so sure. I think having a faith/belief helps people, but I don't have that. I certainly have friends and family close by and for some that is good enough reason but like Sonia I don't want them to see me so disabled that I cannot cope. It must be awful to have school age children, I wish you well. The trouble is when is enough, enough as they say. Art pats, you need to stop worrying, nothing is going to happen overnight and in a strange way this illness is slow enough that you almost become accustomed to doing less as time goes by. I am. Dry much of the live for the moment type of person but I have just cancelled a trip to India with my son. I have been going there for 20 years and though this might be my last time. Why have I cancelled, am I scared. I know I will need oxygen on the flight but after that I should be as I am here. Sort of coping.
However back to the subject, is it worth prolonging this life ? When I read about some of the extremes that sufferers go to to make sure they don't catch an infection, I do wonder if I would ever get to that state. At the moment I see the grandchildren every couple of days with their runs noses and coughs and colds. I still sit in the gps surgery surrounded by ill people and I don't have hand wash or worry about opening doors. Does that come ?
I am 73 and have IPF which was stable for over 10 years but took a nosedive nearly a year ago. From being reasonably active for my age I went downhill and onto oxygen, first 16 hours per day but after about 6 months I am on 24/7. I can still get about, accompany my wife shopping, dine out, cinema, drive, etc but any exertion will reduce me to a panting wreck, so I try not to do it.
As long as this continues, even with increase oxygen flow I will continue to do it. As long as I can get up in the morning, eat, normal bodily functions, read , use the PC etc. I can feel 'content'. However, the idea of being confined to my bed with EVERYTHING having to be done for me is NOT my idea of living. What happens when I eventually reach that stage, which I probably will, I do not really know........but it is something I sometimes think about.
It's really interesting to hear about how you manage and although I am not on oxygen (yet) I have done a 2 month stint on it about 4 years ago. I applaud your honesty about looking at the future. Is this what we all do. Wonder how it's going to end up. How does everyone cope ?
Hi I think stopping the smoking etc. will enable you to stay healthier for longer. If you don't stop I think you would go sooner rather than later. But if you are very severe now or end stage then maybe doing what gives you pleasure is more important than prolonging life? x
Hello Eve, I am so envious of your Indian trips, I have been thinking recently how I would love to go and sit on an elephant, visit ancient places etc, maybe one day if.. we could save some money or win some!...everything is crossed! I think it's good and wise to be careful about contracting germs and infections because it's not fun being sick, I really hate it when it happens .... but anyway that's not going to happen because I'm using my positive thoughts to prevent myself from catching any germs plus some nhs help with flu jab! its exactly a year since I've had AB's and steroids, it is vital we ALL Love and look out for ourselves because we are meant to enjoy and appreciate our lives day by day, and when our journey in life is over we will return to pure energy....but why worry about the future? I'm not going to let being on oxygen stop me from going on a holiday if I can, we are trying to save up for a holiday to Portugal, but I should be okay with my Imogen1... hugs huff xxxx
I intend living as long as I can, as well as I can. I have been to a few funerals this year and to put it bluntly those who had not been taken 'suddenly' (by severe pneumonia or heart problems etc) had lived with severe/ very severe COPD to a reasonably ripe old age eg.84/ 86. They also still got out and about and enjoyed life pretty much as anyone of that age would do - except one had been on oxygen for many years and one went on it in the last year. One used a scooter one did not although both had cars. Both came to a local weekly support group and joined in the exercises, came to parties, outings etc and other interests besides COPD.
There are also plenty of COPD'ers worlwide even on oxygen who travel independently - whether to visit relatives or do 'coast to coast' across the USA!
My own plan is more modest - I don't have the finances for world travel but I do the occasional day trip by train, alone, with my 02. I live alone except when my daughter is home from uni. I don't drive so am dependant on public transport . My son lives a 25 minute drive away and will always come if i need help and ask, but as he is extremely busy with 2 jobs I generally only see him once a month or so. I don't mind this as I may need to call on him and my daughter in law more as I get older (I am 60).
In some ways I enjoy life more than ever before despite being alone and doing most things alone. I think it's because I am just so glad to be alive and finally have realised just how precious life - all life on earth - really is. It's a hoot and a priviledge to be here for this brief time on this wonderful planet.
All the above doesn't mean I am always a happy bunny - in fact last night when I sat down alone as always to eat my dinner I was near to tears when I discovered that the TV wouldn't work - it is part of my evening ritual now - I eat sat on the sofa, my dinner on a small T.V table and the TV is my company. Eating alone in silence without it last night my dinner became something to rush through and get done with as I suddenly found it so depressing sat there in the silence that the tears were welling up. But that was then, and I got up and pottered around for a bit and was soon ok again.
I have 'loosely' planned ahead - that is why I moved into this tiny council bungalow as I know I can manage on my own for as long as possible. My family know to leave me here even if I go a bit eccentric with age and end up living in chaos with 20 cats - so long as I am not a danger to myself or anyone else. I know 'hospital/hospice at home' is becoming the preferred way to see out our final days if that is what we want and that suits me fine - my bedroom window looks out on our little front gardens with a stretch of grass behind and then a public footpath along which I see the mums and children to'ing and fro'ing from school each day. Their are the flowers, birds, cats etc. all going by and I have had venetian blinds put there so that whether it is an exacerbation next week, or the slow winding down with age in 20 years time, I shall lay in bed with the blinds partially open so that I can still see and feel part of the world until the end. In the meantime I am doing all that I physically am able to while I still can even daft stuff like fling down zipwire's with my oxygen on my back.
When or if I become housebound I will return to doing things I used to love, like crosswords and jigsaws - and 'talking' to folks n the internet more. How lucky we are compared to people even 10 or 20 years ago to be able to stay connected to the outside world with the internet.
As for infections I do all I can to reasonably avoid them. If anyone in the family has a cold they call me and let me know. A few years ago we even 'cancelled' xmas day as my son and daughter in law both had colds - we had it about a month later instead when everyone was well. I did get upset the very first time my son refused to see me just because he had a cold, but he told me that if ever it happened that I caught a cold from him and it developed to a chest infection he would never forgive himself - he said 'imagine how any of us would feel if we knowingly had a cold and passed it to you and you caught it and ended up in hospital- or worse - because it developed into pneumonia or something'. So know I don't mind if they ring me with a 'cold alert'.
When my daughter is home from uni she has had a cold before now and I was amazed that I never got it. We were both careful not to hug or kiss - though we did forget and hugged a couple of times. We make sure we have separate towels, flannels, cups plates dishes etc. and she doesn't touch anything of mine and I don't touch anything of hers. The only problem has been the keyboard that I am typing on right now - she invariably forgets and plonks herself down at my desk before I have a chance to say stop! That means no internet time for me for a few days, just to be on the safe side. And it works. I rarely get a cold these days.
So life's not that bad even with COPD for most of us, most of the time. It really is what we make of it - so I will go on doing daft things, or things that I find pleasure in, even if it is something small, as well as working hard on things I care about. It does take some thinking about and conscious planning - it doesn't just happen - especially for someone who was always a serious and pessimistic person like I was. Most of all I will keep walking and doing things for myself wherever possible as this really is a 'use it or lose it' disease. So I am gong to get up from my chair for a few minutes now, turn up the 02, put the kettle on and have a dance to the music that's playing on Radio 2 while I wait for it to boil Vanessa
PS Just looked back and saw how much I wrote! Sorry!
I loved reading your post and I hope your tv is sorted out, I have to confess to doning my oxy and shaking my booty to the radio ( 6 ) as well! huff xxx
Hi Eve3066 what a thought provoking post and the $64000 question.Its something that probably crosses most of our minds the more severe we get.Life is precious and everyday a gift,thats not to say there are times especially when we have the dreaded CHEST INFECTION we can struggle so much with them and can feel fed-up enough to question our existence .Fortunately we recover and continue to live our lives thank-ful for feeling so much better,enjoying our families friends,laughing again and taking part.I have a very small circle of people and loved ones and do feel fairly lonely at times.Since I started with meditation I do feel far more relaxed and comfortable with me and my lot .Whats great is we have here to come and talk and share exactly how we feel ,I believe that talking helps so much.I dont want to be a total burden to my children and hope my time to say bon voyage happens before that, as I dont want my childrens memory to be more about suffering than happy memories.So Ihope wish that we all still have many happy times ahead of us before the inevitable. Stay well Eve be happy Janexx
You are allowing your body to fail. A change of mind set and you can reclaim large areas of your life back...those that you can't achieve, change for something different. Push for rehab and then you will find out over six weeks how important it is to exercise and keep control of your life. My giving up smoking came at the same time as rehab. The first week I had just kicked the fags into touch with the help of magic pills but the second week I noticed a massive improvement and that carried on throughout the course. The course finished, unfortunately, but with my new learnt breathing control and no fag smoke, I hardly ever use my ventolin inhaler.....before I was using one a week on good weeks, more when I was poorly. Since the PR, I have maintained a small amount of exercise, kept away from fag smoke and carried out breathing control when I am SOB....I could almost go back to work, but thankfully, I have reached retirement age. I am still Severe COPD but my life is certainly not sliding downhill as fast.
Brian I have done the rehab course, it was brilliant. I am not so bad at the moment. Friends are coming to see me and my son and family here at the weekend. Still managing to do most of the things I want although rather more slowly. The question was to find out how people thought about this prolonging life thing rather than a personal thing to myself. I am not sure how I feel about it and of course because we, none of us know how thingsare going to turn out there is always speculation about the future. I know someone says they don't think about it but I think most of us do.
I am determined to stay alive for as long as I can. If I feel that I may be loosing total control of my life and heading for 100% dependency route, then I have my little "get out of jail free" kit stashed away and will then take the cowards way out but don't want my grand kids to remember me as a frail old guy , wasting away in bed. Having had COPD for 25 years and now at the severe stage, I still fight on. Have been through a cancer treatment this year and have another lot coming up but it just makes it even easier for me to fight back. Had to replace motor bikes with mobility scoters and all other types of adjustments but I just find a substitute for every thing I have to give up. The need to get out and annoy people drives me on. In the past, when getting over an infection and house bound, I found sites like this were a God send but...and it is a big but, sometimes you can come on here and if you aren't very careful, the big dark cloud can descend on you. You read other folks posts, take on their complaints and ailments and once you get down there, it takes a lot to get back up and so I don't do that any more. If I have an infection, I wrap up, dose up, get the scoter out....go to the park, a local woods, around the canal....in fact anywhere where there is fresh air and a little bit of wild life going on. I had a respiratory nurse, who was quite blunt about it. She said, yes you are poorly but you aint going to die in bed.....the worse think you can do with a chest infection is lie down...get up, be sensible but do as much as you can. It worked for me. The fresh air etc, has kept me free from infection for over a year. My family all know not to bring bugs and sniffles into the house, thanks to PR, I know how to self medicate and keep a good stock of medicine available, the freezer has got ready meals in for when I don't want to eat much or can't cook and my scooter has saved my life. I am convinced the best place for picking up infections is our modern air conditioned busses...certainly some one with powerful body spray or deodorant can get me coughing but on m scooter, I avoid it. May get wet and cold at times but my skin is waterproof and when I get home a good warm shower and change of clothes revitalises me. Me, no, I'm not an advocate of giving up....life is for living....go to art classes, reading groups, natter and knit, whatever but not the wooden over coat.
Your bang on regarding reading posts on here and taking them to heart. I love this site, but, I did notice I was getting very down about what I was reading.
I know we need to remember what BLF say's, that everyone is different dispite having the same disease. But, I still jump to the conclusion that whatever anyone is going through, I will too, which then starts my descent into the dark pit. Posts like yours, give me hope that it may not be so bad a life, after all.
I love posts from people like you that have had many years of experiences with COPD. To a newbie or those in the early stages, who can only imagine what lies ahead, your input is invaluable. Thank you so much.
It just boils down to the old saying "Laughter is the best medicine"....and laughs and enjoyment don't usually come looking in a bedroom...well sometimes but trying to keep it clean. I also believe that a stranger is just an enemy you haven't made yet and I haven't enough enemies yet so I shall carry on grabbing life by the horns and giving it a good kicking. On a little more serious side, a lot of folks think that being SOB is a danger sign...well it isn't. May be a sign for a little caution but it just showing you that your body is using oxygen faster than you are grabbing it in...you are in fact exercising your lungs. It's how you recover that is important. Forget your ventolin and other chemicals, get into a comfy position, if possible leaning over something with your arms dangling free, breath in through your nose and out through pursed lips and a couple of breths you are back to normal. If you watch any athlete that has trained hard for an event, he or she would be very disappointed if after the race, they weren't gasping for air...it would mean that they didn't give it there all. So, when outside and you get short of breath, find a railing, or better still a gate, hang over it, do your breathing control and admire the view. You have now done some useful lung exercises, cleared out the lungs of stale air and increased your capacity for clean, fresh air. If the air is polluted with exhaust fumes, I wear one of those snood type things. Put it around your neck and you keep warm, fumes getting to you....pull it up over your nose and mouth, ears cold...wear it over your head...shoplifting....no, no, don't try that. The reason we always feel cold and tired is because we don't move around enough and get fresh air. SOB, go outside the back door and door 2 minutes breathing control...house will feel a lot warmer when you come in. If you want to go to the hairdressers and find the fumes too bad, make your appointment first thing in the morning after they have been closed for Sunday and then flaunt your new hairdo in a café for breakfast...any thing to keep life ticking over and the joy of living in you bones. Adapt and change but don't give up...simple.
Well, next time I am climbing the ancient steps up a walk I do with the dog, I won't try 'pushing' past the breathlessness. I thought doing that was good excercise for my lungs lol.
Your so right, nothing beats a good old giggle. As for feeling cold, I'm constantly freezing, especially my hands, it aggravates my Fibro too. My son has been trying to tell me exactly what you just said, a walk will warm me up. He then usually gets a gob full, only joking.
Thanks again cornishbrian, I will take your advice on board. x
Great post Brian, great outlook if I may say so. I thoroughly agree with you and although I am not using a scooter yet I have planned walks that take me past seats and railings to lean on. A few minutes and you are away again.
Hi Eve3066, just seen your post as I was busy yesterday. I appreciate your sentiments. Just recently I crossed that path with an elderly relative, they no longer can care for themselves even at home due to frailty and it jolted me into thinking like you how will I cope alone with no state care facilities, should we be trying to prolong life as you say when we are already incapacitated, it is not my idea of living or my elderly relatives. It is frightening to even consider how the future could end up. All we can do is take each day as it comes and try to be optimistic.
I used champix the reason I chose this was because you take the tablets and continue to smoke I was petrified of giving up my cigs they were the cure for everything or so I thought within 10 days of taking champix I gave up my cigs that was 10 years ago and thank God I did, 7 months ago my daughter gave birth to a beautiful baby girl I might of not been hear to see her
I admit I am guilty of wondering the same thing at times. I exercise. I try to eat right, take all my meds. I keep every doctor appointment. Basically, I’m obsessed with it all. I see people who can barely walk, have to be cared for and have not much quality of life and I wonder is this why we do all we do, so we can live longer and longer to that existence? But I’m not there yet, so I will be thankful for each day. I will keep up the fight of this disease and try hard to get on. I will love my children. I will take my grandchildren for walks and enjoy being with them. If (when) the time comes that I am too feeble, I will have these memories.
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I have been thinking recently how I would love to go and sit on an elephant, visit ancient places etc, maybe one day if.. we could save some money or win some!...everything is crossed! 
I think it's good and wise to be careful about contracting germs and infections because it's not fun being sick, I really hate it when it happens 
.... but anyway that's not going to happen because I'm using my positive thoughts to prevent myself from catching any germs plus some nhs help with flu jab! its exactly a year since I've had AB's and steroids, it is vital we ALL Love and look out for ourselves because we are meant to enjoy and appreciate our lives day by day, and when our journey in life is over we will return to pure energy....but why worry about the future? I'm not going to let being on oxygen stop me from going on a holiday if I can, we are trying to save up for a holiday to Portugal, but I should be okay with my Imogen1...
Vanessa
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