Third post not sure it's ok to express on here but frozen in fear ...is that normal reaction to this.
Facing life being over : Third post not... - Lung Conditions C...
Facing life being over
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37 Replies
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You are not going to die from this for years if not forever! I’m Fev1 25% end stage and still working!
• in reply to
I get bit puffed walking up stairs getting out the bath...got a very physical job that really takes it out of me guess I know why now. It's not death well it is but more the quality of my life that concerns me
offalot• in reply to
ok, I'm 69, end stage cold, can't walk or get out of bed, some days I don't have the breath to lift a bottle of water. I have a couple of testicular inguinal hernias, from coughing, and one of these is the size of a melon - when I sit cross-legged as I do 24/7, my scrotum fills the gap between my thighs, is in constant contact both sides. This little bugger presses on my colon, closing I so tightly not even wind can get past. So I've cut out all dairy, and recently all brassicas, legumes - anything that creates gas in the gut, bloating. That boring diet combined with enough laxative to treat a hippo, keeps me regular and prevents constipation which could be fatal. I live alone, make bets with myself whether my lungs or my gut will get the credit / blame for seeing me off, which means both that I'll win the bet but won't be able to claim. But that's life.
I can only quote Spike Milligan, who said "I don't mind dying, I just don't want to be there when it happens." Spot on - only Spike had genius like that. (So why do some people credit some colonial unknown, Woody something but not Woodpecker, with coining it. Obvious plagiarism.) Spike's gravestone bears his epitaph "I told them I was ill". Mine will be simple too
"(My Name)
Dead Good"
I think that covers about everything for everyone.
which brings me to the point of all this rumble (typo, but apt, so staying!).
Things are his you perceive them, and that's rarely how you expect them to be.
For example, independence. Nobody can take that from you! Nobody except you, that is.
I had an electric wheelchair, but resisted getting one for ages. The stigma, the step towards becoming an invalid, another chunk of my independence eroded. Until the real truth dawned.... The only thing I had to overcome was the perceived stigma, because a wheelchair didn't destroy independence - it enabled it, prolonged it. It was a tool, a vehicle, not something that advertised Look, Disabled Bloke! I decided I'd get away as much as I could, while I still could, and travelled all over the country, in buses and trains. From North Yorks and Lancaster in the north, to Devon, Cornwall, Kent in the south. Seaside towns out of season, cities to explore, people to visit. That was fun.
Independence is an attitude of mind - and you'll be amazed at how incredible your body is at adapting to change, no matter what. If you let it. You'll find out.I would never have believed I could tolerate, let alone enjoy, life as it is for me now.
For years I resisted having carers, until I could not manage without. Then I refused "Personal Care" because I felt a freak, having a massive hernia, and I felt that being washed was another step down. I could wash my face, and in good days my chest, but the rest made me too breathless. And doing my groin was literally a three-handed job, two to hold scrotum away from thigh, and third hand to get in and wash, to do it properly.
Then I notification that I had to change from my existing DLA to the dreaded PIP, and I'd score a lot if points if I claimed for being washed. It could make a big difference. So I gave in, reluctantly. My fears of my hernia causing offence or labelling me a freak were unfounded, it was no problem, and I realised that, in my mind, being washed was akin to being fed, the mark if a total invalid, and I wanted to remain valid! Then one carer said "just think of it as being pampered". Wow. I did! Now I lie back and thoroughly enjoy it, just kick myself for refusing it for so long.
As for independence - that isn't in question. I'm still in control, I still make the decisions, and with many things it's like taking a taxi instead of driving yourself, and you'd not see that as eroding your independence.
Another long ramble I'm afraid, but I hope it might help. You have incredible reserves, resources to keep you going when some bits flag. Survival is the most powerful resource, will find ways so learn to trust it, and stop worrying. So easy to say!
Last year I didn't think I'd see Christmas, was pretty sure. Then I doubted I'd make it to a respite break at end of Feb, and anyway reaching summer was impossible. But I'm still here, still breathing, still horrified by the stupidity of the world leaders, governments, health services...Don't get me started
Enjoy life - just take each day as it cones - after all, the present moment is all that any of us actually has.
good luck
Accolades to you, offalot..for your fortitude and determination, and for taking the time to share your experiences. Thank you, J.
Normal reaction, yes. Education will help take the edge off. I was diagnosed moderate 3 years ago though I probably had symptoms 5 years earlier, just chose to ignore them. Quit smoking for 3 months after diagnosis then foolishly started again. Quit again a year ago. Feel better, breathe better, more energy than have had in years. No decline in lung function. Work full time, go to the gym, live a full life. No amount of reassurance will reassure you at the point you are at. I’ve seen dozens of newly diagnosed people come on here all with the same questions “how long do I have?”, “will I end up on oxygen?”, “is this a death sentence”, etc.
Who in blazes knows ? It depends on you, your behavior, environment and genetics. So no one here can answer for you because everyone and every emphysema case is different. You can help calm your mind by realizing the truth of what people on here are saying about their particular stories, most of which are not doom and gloom. Then do all you can to take good care of yourself and take each day as it comes. Exercise, water, good diet, no smoking, taking meds as directed, getting flu and pneumonia jabs, avoiding contact with cold germs, frequent hand washing, limiting exposure to irritants like exhaust fumes, all these things and more tips others may add - this is all any of us can do. No crystal ball, no tarot cards to tell the future, just being aware of how many others have got on with their lives long after diagnosis, which should give us all hope, and taking the best care we can of ourselves. You will get there and I hope this initial scary time passes for you quickly. Warm thoughts for you.
• in reply topepapod
Thank you you are so correct. This is a honest response ..can't avoid colds as work in a school.but the rest yes I can do...had a few tired days..
Lemon7• in reply to
Pepapod has just given you such good advice. Good wishes to you. Don't waste a good day worrying about what might be. I did worry about rapid deterioration when first diagnosed, but the more you learn how to take care of yourself, the better you will feel.
Well Said pepapod, I'm Still here, Still Alive, and Doing everything to stay that way. xxxxx
• in reply toHacienda
Just read your profile you are amazing I see no hope for me
Hacienda• in reply to
Oh Jann, Why No Hope, We all have Hope, it keeps us going, plan for a day to do something you like, I plan that Tomorrow Sunday I will give myself a Relaxing Pedicure, a small thing but a Good feeling. I go to Rehab every Mon/Fri. I go to Breathe Easy Exercise Classes twice a week, We are all the same at different levels, We have to Plan Ahead. Please stay Strong Hun... Love n Hugs xxxxx
A brilliant reply. We all get down sometimes so it's nice to be reminded that there are some things that we can do to slow the progression. Thanks pepa, have a lovely weekend
Your life over? Come on now, you have many years of good quality of life. Like Apeter, I am still working too, full time and I will be 69 this year. My FEV1 is 28% and not on oxygen with my emphysema. Not only am I still working. I have just finished a weeks holiday sailing a 14 ton yacht, almost single handed, with my partner, daughter and 14 year old grandson.
I understand your fear, most of us, inc myself, suffer shock on the diagnosis of a chronic disease, it is normal. I can assure you that you are not anywhere near to dying. Strange as it might sound, exercise is key to having a better quality of life. You should not let anxiety take a hold on your life. You can and will acclimatise to your condition, you have absolutely no cause to worry once you have made changes to a healthy lifestyle.
You are very lucky to be diagnosed at an early stage, you have time on your side to enable a healthy lifestyle and minimise the impact. Many of us do not get diagnosed, like me, until we are severe and even then there can still be a good quality of life to look forward to.
Getting breathless can be very frightening, but the bummer is the more frightened you get the worse the breathlessness will get, it is a viscous circle. You must relax and slow your breathing down with long, slow deep breaths, breath in through your nose and then breath out slowly through your mouth as if blowing out a 100 candles on a cake or whistling a tune. Getting anxious will make your breathing shallow and fast, the exact opposite of what you should be doing.
• in reply to2greys
I have looked on your profile are the other conditions a result of emphysima or in addition to it. very inspiring..
Am I correct you gained lung function then lost it.
2greys• in reply to
All my health problems are as a result from smoking. Yes I did regain lung function for a while until I developed lung nodules and ultimately lung cancer, one of the nodules developed into a benign tumour that has restricted the airways to my top, right lobe, it is still there, this is how I lost what I had gained. The malignant tumour in my top left lobe has been treated and has been shrinking since, hopefully cured.
• in reply to2greys
Thank you for explaining...so possible to gain lung function but not capacity...
2greys• in reply to
Yes, exercise, deliberately getting breathless, improves the efficiency of your lungs and also improves the efficiency of your muscles, to perform better with reduced available oxygen, think of it as the high altitude training that athletes do.
Yes. I had panic attacks for about a year they have calmed down. I just lost my best friend so feel lonely and again panic. I just try to keep myself calm.
• in reply toRoessner541
Sorry for your loss
I don't know, I must be a different sort of person! If I thought I was going to Die..I would throw the biggest goodbye party I could! Yes I believe in God and what he has waiting for me! I have Congestive Heart Failure from a damaged Muscle in my heart, from Chemo for Non Hodgkin's Lymphoma. I also have a paralyzed diaphragm from chemo. My left lung cannot fill because my diaphragm is stuck in the middle of it! I have COPD, a nodule in my lung (?) I have a hientel Herna so I cannot eat a whole lot at one time! I constantly fight UTI,s! Cataracts are coming and I have varicose Veins, which 2 were stripped because of leg ulcers and infection. I also have PTSD and ADHD, now i have chemo brain! I am also ACOA..Adult child of a alcoholic! and the other night at 1;00 in the morning my leg started SPRAYING out Blood! Oh my. I used Pepper to stop it and clot it! Thank God it worked! Now why am I telling you all this? Because with each of my ailments I too thought I would die! But I am still self employed working in my Hair Salon. Sometimes with Oxygen on! GOD IS NOT GOING TO TAKE YOU TELL HE SAYS YOUR TIMES UP!!! Look what he does with me! Uses me to inform people of different things! Like Pepper clots blood! G
reat to know. And look at the pic of me..yes I look like that..no one looking at me even knows I am disabled! So when you get afraid of dying...just remember Jesus Loves You! Janet127
Oh my goodness Janet, my mum had that a while ago, where her leg started spraying out blood. It was horrendous, like something out of a horror movie. It only ever happened that one time thankfully. It’s strangely reassuring to know it happened to someone else too. I hope that doesn’t sound too weird! I’m sorry it happened to you. I can’t remember what the doctor said caused it, I think I’ve blocked it from my mind! It may have been something to do with varicose veins.
Your picture is amazing and so are you 👍
Thank you for your post! I am so happy that someone knows what happened! I don't know what it was, but I got it stopped! Think..what did the Doc say it was, to your Mom!! You made my day! Thank you so much and if you remember...post it!!! Hugs Janet127
• in reply toJANET127
He does thank you xxx
Wow, you look amazing Janet!
I just saw a trailer for ‘Catch 22’, the TV adaptation of the book about a US bomber base at the latter end of WW2. It is a black comedy and one of the best books I have ever read, bits of it made me cry with laughter.
In the clip two of the main characters were walking together and one said to the other, who is obviously not happy at the chances of getting shot down and killed, something like:
‘This is you; worry worry worry die. This is me; happy happy happy die’.
I don’t live with COPD; I care for my Mum who has stage 4. However, I was diagnosed with Hepatitis C in 1998 and spent a lot of time at night trying to make deals with God about living and generally worrying about death. That feeling did eventually subside and I am still here. And I don’t think God paid me any more attention because of my bargaining.
I think fear has got to be a natural reaction but the shock will recede and when you keep on being alive you will adjust to the knowledge.
And I wouldn’t have been the ‘happy happy happy die’ character, I was the other for a long time.
Wish I had been though, what a great attitude. But then he will probably be one of the many insane people in the story.
It’s on Channel 4 on Thursday btw.
Regards
• in reply toPhil40
I believe God answers prayers I truly do he must have answered yours. You are wonderful people I don't want to get to a stage where I can't look after myself. I don't want that I want to look after myself this is what scares me. I pray that God heals me as I can't stop crying. It's wonderful you all push through I can't. I see progression and death maybe I will think differently one day. For now I just pray God hears my prsy
I just see not being able to work losing my home, independence I have nothing I not being able to sleep having rapid breathing think sleep apnea Dr won't listen to me
Having heart scan not sure why scared scared scared
Janet your story inspirational but very scary. Are all your conditions related to copd I see a few who have copd and cancer oh father Jesus help me
Hacienda• in reply to
Hi Jannb54, Lots of Good advice here for you. Read mine and a few others on Here, who have Stage 4 Emphysema and on Oxygen. I like to think I believe in God, But I honestly don't Rely on him, I get on with my COPD myself with the help from My Wonderful Hubby and my Consultant, My Rehab Nurses, My Friends on This fantastic Forum, and my Sense of Wanting to Live with Positivity. Stay strong Hun, and Learn to accept and make Better. Love n Hugs. xxxxx
Hi Phil, I read a book called A Contract with God, it was quite some time ago so I can't remember exactly how it went but pretty much like you said, bargaining with God. Needless to say it didn't work. I think many of us do that at some point, try to make a bargain either for ourselves or for a loved one. I do believe God saves lives but I guess we can't make deals with him. I love your analogy of happy happy happy die, I'm glad you're more like that now, I try to be too, worry worry worry die does sound like a waste of life when you put it like that.
Hi Jannb54, I really hear your fears and anxiety from what you write.
All I can offer is keep talking and seeking help and advice from good positive people, such as on this forum, people who are experiencing similar worries and can offer relevant accurate advice.
I am jealous of people who have a strong faith because I don’t; I am not sure about my prayers being answered but I am still here and do have hope that there is a Higher Power of some sort.
My Mum is on oxygen 24/7, is 82 and just pulling out of another flare up, and is testimony to the resilience and fortitude of the physical and mental capacity of our being.
I hope you have a better day,
Regards
Wow Phil, your Mum is doing well. Very inspiring. By the way, God listens to all our prayers, whether you believe or not!
Thank you, I appreciate that.
Very natural response!! The first year I was diagnosed I would only buy plants in flower(wasn't sure Id live to see anything come up the year after!!) I did tell my consultant that I felt this way . He tried to reassure me but if you are a worrier,you are a worrier!!
Like the others,I do my best to look after myself but still push the boundaries! I have had a lie in this morning, I didn't get in till 1.00am! I love Live Music and go out to our local pub twice a week. A few real ales and a good band and I'm happy. You do'nt need much lung function for that!! 
Find the things that you enjoy doing and can still do. I also read and paint. All of our lives can change in a nanou second,even healthy people! It does make you live in the present more which is good!
I "froze" for 3 years and went thru all the stages of grief--I thought my life was over--I was devastated. Yes I think your feelings are normal--But work on getting better and stronger...I know its painful and a shock . You are entitled to that and some sadness. Just totally educate yourself. Listen to people who have dealt with it longer and get movin. I laid around for wayyy to long and it just made me worse--You will adapt and even feel better if you dont dwell to long--Been there done that!!!! Hugs,Mmet
Hidden, I am sorry if my post was scary for you. No..I don't think any of my other conditions are caused from COPD. My Cancer/chemo created a lot of my conditions! So please don't focus on that! Just focusing on COPD is enough! I was just telling you what I have lived thru to have you understand, no matter what, God will not let you die...until he decides your time is up! So if you can LIVE...LOVE...HAVE FUN! Cry when you need to! Scream when you need to! Get angry when you need to...Go thru your feelings and on the other side you will find your Joy! Everyday, find 5 things you are grateful for! Hugs JANET127
Very normal reaction. Welcome to the family. Just relax and listen to our experience.
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