What aspect of your condition has the... - Lung Conditions C...
What aspect of your condition has the greatest impact on your day to day life? And how?
394 VotersPlease select all that apply:
BECAUSE OF BREATHLESSNESS I HAVE TO PLAN EVERYTHING I DO AND ALLOW EXTRA TIME TO DO IT.
IT HELPS ME TO USE OXYGEN TO ACHIEVE WHAT I WANT TO DO .
I CAN DO MORE AND RECOVER QUICKER USING OXYGEN
I am pants (that is not the word I used at first but I thought this is a polite website!!!) at planning thingsin advance. I try to bring everything from the bedroom downstairs so I don't have to go up again but like normal healthy people once I get up there I forget what I have gone for!!!
The constant feeling of tiredness and lethargy mean that, quite often, I can't even be bothered getting dressed, let alone make arrangements to go out or to exercise. I'm not sure whether this could be depression.
hi i have just joined this website so im new i know how u feel i cant wait to go to bed i sit on the side of the bed get my breath back lay down O wow i can breath but dont sleep very well looking at the clock all the time as really really dread getting up in the morning i wish i could stay in bed i feel so bad but come afternoon i start to perk up a bit i would love to have the energy to go shopping and clean the house like i used to cant even hoover etc have to pay someone the same with the garden what i used to love doing i think a lot of it is depression but does the doc ever listen i know what i feel like please someone give me a pick me up to just help take care
Hi Nikki
I can assure you that we all feel as you do from time to timme, but we must fight against depression as it is almost (maybe as much) as the disease itself. Speaking for myself, after 13 years with E, the mornings are always a trial, but as the day progresses I begin to feel better. I would say that Exercise, however much or however little, is a key factor in feeling better - maybe its the endorfins or some such. I always try for a little exercise. Best regards Martin
thanks martin1945 i must admit afternoons i start to feel a bit better but mornings i cant handle i really dread getting out of bed because i know what its going to be like i love going to bed once i get me breath back O joy life must get better surely been out for a slow walk round my estate ha ha if only u new what i used to be like but now will just have to cope but i think friends do not understand never mind take care
I am the opposite I open my eyes in the morning and think today is going to be a good day. Downhill by afternoon. All over by early evening.
whenever I think about a PJ day I throw it out the window. Being clean, fresh and dressed is as much a part of my non-days as it is on a good day. Any way a good coughing fit will bring on leaks in my bladder so regular baths and change of clothes keeps me part of the human race.
I feel exactly the same way. I am becoming very depressed because I'm feeling unable to do anything or even be bothered. My children aren't supportive because they don't understand, I'm going to join a breathe easy support group. Take care my friend.
would like to just go for a walk without stopping every few yards.
hope i get onto oxygen in april.
I have the same problem and awaiting an appointment for oxygen assessment. Just got home after a walk round the shops and really feel ill and depressed glad to get my feet up and breath again but left me with a headache as well. I,m new to this on line sharing of feelings so have found reading comments more useful. I have I P F and Asthma as well as other problems.
At present if I start to cough I end up nearly chokling. Hence I have cancelled a number of engagements recently just in case, Hopefully when the new medication kicks in this will ease. I commenced taking Mucodyne 4 days ago. I also have Sjogrens Syndrome so all the questions apply with the exception of oxygen.
Not knowing who is infectious and having to constantly educate people to be considerate about this. I take as many measures as i can - hand washing, not touching public surfaces/handles etc, avoiding crowds. Friends are very sensitive to this and always warn me, but family assume they can kiss me whatever infection they are carrying, and get offended when/if i refuse this. This issue is not given enough prominence in copd and general health education imo. Some of my exacerbations just happen, but some could be avoided.
For O2Trees....I always used to get angry when the family would kiss and hug my Husband whenever they had colds and bugs...people just don't think do they. I tried everything to keep him away from other peoples infections. Sadly he developed his own and didn't recover from it. I understand exactly how you feel. xxx
When I have my chest exacerbations my normal life stops. I am in so much pain, coughing, so so tired and struggle to get about my flat. With each exacerbation I am off work for an average of three months. I do have other health problems which probably contribute. It's sould destroying and makes me so unhappy although I try to be positive.
Breathlessness - so frustrating because only 2 years ago I would walk up hills easily with my walking group -now just a gentle slope is challenging & I can't keep up with the others. The mucus is embarrassing. The coughing is so tiring.
I have great difficulty walking up stairs and having a conversation. Any form of hill is a no no. I am permanently tired. All I seem to do is work physio medication and bed!
I have problems with breathlessness when walking distance up and down stairs hills/inclines.
I have had cough for near 7- 8 month constantly through day.
Bringing mucus up each time I cough awaiting appointment with specialist at. Hospital as I went to lancaster hospital but they want me transferred to blackpool as it nearer so may have to wait another 6 month how going to cope don't know also waiting to hear from COPD clinic for assessment that just my lung problem.
As for walking that's partially to do with my arthritis and perosis in legs and back. But I been told walking daily will help
I get breathless when lifting or moving heavy objects, coughing to clear the mucous can be an effort but once clear it lasts for some hours. I am taking Symbicort and a Salamol
Easi-Breathe. But I am able to do most things with thought
I havent realy been diagnosed yet,
but seen my xray and fev 1 results sent to the appeals court.
for anxiaty and panic and deprassion
doctors had my xray results for 10 month now,
i just found out about them last month.,
doctor sent me for another xray and spiromater test
get the result on friday.
breathless is the worse for me and the embarressment
of not been able to keep up with the pensioners when i
try to go to the shops
I live in a flat and walk from my lounge to the bathroom to wash and shave and i am breathless
and i am prone to chest infections
Breathlessness is the worst thing for me, not being able to walk at the same pace as others, and doing housework is difficult (or is that just an excuse, I ask myself !!)
Breathlessness is a big problem.Its like trying to breathe through a plastic bag especially
when walking in the wind and when it's humid.
Infections are a pain, especially when planning to go away and the next thing you know
Is that you have an infection and into hospital. Your plans gone haywire.
As for coughing. It is so embarrassing. People do no understand.
Like others I have to plan,having had a nasty complete loss of breath (+ otherthings) I rarely go out as I am limited to about 20 metres and I am out of breath and it takes some time to recover,even with oxygen. At least I have my faculties and spend at lot of time on the net.So its not too bad.
I am having flare ups every 3 to 4 weeks and have done for the past 2 years,I am constantly coughing, and choking is a real fear for me, aswell as an embarrassment. The exacerbations hit me hard and I struggle to walk the few yards to my bathroom. Antibiotics and steroids get me up and about again and then a week or so later the cycle begins again. I am sick and tired of always being sick and tired.
That's me exactly coffalot, i feel for you. Love Kin Xx
Like hawkeye being breathless so easily means lots of planning. And lots of no's also. This year is better than last as I now have oxygen, which means I recover much quicker instead of any activity knocking me out for a day. Using oxygen does not stop me getting breathless, but does mean I can do more. The stairs used to have me gasping, but now I use oxygen up the stairs I am not gasping at the top, only breathless. I could never have imagined the new me. Everywhere I go oxygen is with me. Everyone now sees me out with a cannula. But a small price to pay for feeling better.
It is the lack of mobility that causes me most angst. That and not having the energy or stamina to travel.
Always breathless but Constant infection causes breathlessness to become more severe which results in me not being able to do much, although I keep trying. I get that I don't go out unless I have someone with me.
Everything takes so much longer as you get tired and have to rest. What used to take me a couple of hours now takes me all day.
Breathlessness:
My life has dramatically changed in the last three years. Severe Emphysema, Oxygen 24hrs a day, too breathless to even dress all in one go. One minute jobs now take 15 minutes. Friends have 'disappeared' and don't really understand. Extreme loneliness.
Chest Infections:
Every Winter, continual chest infections. Thank Goodness for the wonderful GP's and Nurses in my Surgery. Two or three months without being able to go out or drive the car. Too weak to lift the portable oxygen concentrator on my own. Live on my own.
Oxygen:
This isn't meant to sound ungrateful as I would probaby be dead now without the oxygen. My ears continually sore from having glasses, hearing aids and piping to canular over them - I'll be like Dumbo soon. Dragging a lead behind me everywhere and tripping over it at home. I don't want it piped in as I found this even more awkward and time consuming and need to move the concentrator in Summer months to the rear of the house so I can go into the garden. It's restricting but I am grateful to have it.
Generally: Constant Steroids impeding the medication for my extreme osteoporosis. Five spine fractures and being fragile making lifting portable oxygen in and out of car impossible. Living on my own I am stuck.
Generally:
Totally debilitating and demoralising as I can't do much at all. Can't even walk across the cemetery to visit my husband's grave - that hurts an awful lot.
It's the coughing that gets me. My consultant told me I have cough variant asthma along with my copd. I'm on and off steroids because my lungs get full of inflammation. I get tired easy and when you put this with the lupus sometimes I feel like giving up. I'm lucky that I have two grown up children and 1 grandchild to keep me going. I'm 55 I watch the few friends I have go swimming and run on the the treadmill they also work I would love to just be normal for my age. I would also love for my hubby of 36 years to care.
INFECTIONS ARE MY NIGHTMARE WHICH OF CAUSE BRINGS ON BREATHLESSNESS.
in fact I see every thing on the list as an interchanging as COPD, I seem to be picking up infections month after month, am as careful as I can be but then if we wrap ourselves up in cotton wool that would do either.To be honest Guggi has written everything I feel although as yet not on 24 hour oxygen. I f Guggi lives near Devon I would happily be in contact, I also have osteoporosis, and have 3 compressed fractures!! life is never easy with COPD that is for sure.
Breathlessness and the use of oxygen mean everything has to be planned out to avoid problems relating to anxiety and panic attacks. The constant tiredness can result in nothing being done and a day is totally wasted, leaving me feeling useless and unimportant to society.
Becuase no one doctor seemed to be able to diagnose the cause of the cough, so I was passed around hospital departments and back again, trated like a hypocondriac whilst they all thought it was caused by something else.
coughing leads to breathlessness leads to tiredness
Stop the cough and then I'll be better
Tiredness and lethargy i go through my life day after day permanently tired and worn out buti i do have other longterm health problems other than copd and one does not help the other. I am knackered before i am even out of bed in the morning
Breathlessness - limits all activity - only 3/4 metres from the brick wall some days. Unable to do almost anything for myself. Totally dependent on my wife.
Thank heavens for my community nurse.
Chris
I'm 72 and have COPD and picked up MRSA of the Sputum whilst in intensive care and intubated about 5 years ago which makes me cough more, I coughed so hard that I caused a umbilical hernia.
So now if I cough a lot it makes my stomach swell putting pressure on my diaphragm making it hard to breath, it's like someone is squeezing my heart, when at its worst I get a resonance in my head and have passed out. This has caused me to stay away from people as much as I can as I can't afford to pick up even minor infections
Breathlessness -
Nearly all the time, have to plan every little thing to allow extra time to get my breath back.
Cough -
Almost every time I lay down, makes going to sleep in my bed a rare occasion, usually have to try and sleep propped up.
Frequency of infections -
Like now, finished AB's at the weekend, already blowing out green gunk - fed up of it. Never ending.
Mucous/sputum production -
Not always a problem, but distressing if you're out in public. Sometimes wish I could get more up.
Tiredness/lethargy -
Always, keep forcing myself to do things rather than sit and watch TV. That's the easy option.
Use of oxygen -
Nope - that's the only one I didn't mark
Other -
Feeling helpless so much, people around me not understanding how I feel, expecting me to carry on as normal - whatever normal was. DWP being such a pain in the rear about benefits, which I not only find restricting but quite offensive. If I was able to work in my condition I would do, there are many days I can't even set off out of the house, regardless of any good intentions I may have.
Te breathlessness and coughing mean that I can no longer carry out woodwork or minor house repairs. The production of excess sputum is embarrassing when you go to a restaurant or even out shopping - people stare
Pete gets very breathless at night when he comes upstairs and he has good days and bad with the coughing. He is also tired most of the time and struggles to stay awake at times. He naps at least once during the day if not more. Sputum production varies from day to day, sometimes just a small amount morning and evening but generally quarter cup morning and half to three quarters in the evening. He hates the mornings most because the mucus is sticky and harder to get up even with the help of Mucoclear. Every day is a challenge really but I know there are others so much more worse off. Pete can also cough very hard and pass out especially if he has a chest infection. I try very hard to keep him well and family and friends know to stay away if they are ill.
Because of exercise intolerance am struggling to lose weight and every little chore seems to take forever.
Soeey was not able to leave commernt on my cough re survey
I get a tcikly annoying cough which evenatully turns nasty. I find it very annoying
Whoops that should have said sorry and not sooey
Like most people here I could click nearly every box, they all interrelate. Breathlessness is there all of the time. Everything has to be planned to avoid stairs and hills so visits to friends’ houses can be tricky if they have an upstairs toilet
The cough and the sputum seem to come with the almost permanent infections (My G.P. jokingly suggested this morning that I move into their spare office as I am there so often) the cough is not only embarrassing it’s very loud and it can be painful once the stomach muscles have been pulled.
I am an Oxygen retainer so I can’t have it at home, my main problem is Emphysema but this is aggravated by the pseudomonas bugs that have taken up residence in my lungs. These are being kept at bay by two nebulized antibiotics every day. Two saving graces I get free prescriptions and as yet I am not hooked up to an oxygen bottle.
Breathlessness is the main problem followed by sputum production and how it must be for others around you. Also frequency of infections involving hospital visits for introvenus anti biotics. If these could be administered at home It would surely save money for the NHS and I would be happier too.
Breathlessness ! It's annoying. What Is REALLY frustrating however is that two years ago, when I was smoking I could do anything, Chop wood, walk for miles, swim and amateur surfing, etc. About three months after giving up smoking ( I gave up after being diagnosed with angina so I blamed the fags ) I found I couldn't walk a hundred metres without getting very short of breath, like drowning in fresh air. I then got diagnosed with COPD. Now that is the most annoying thing out of the whole business
Exactly the same for me Puff. Not a single problem until I stopped smoking. Of course, I understand the damage was being done but it was a huge disappointment to get so breathless and be diagnosed after quitting. Nobody ever says that might happen!
My GP said, if they told people it might happen, nobody would stop smoking.
And exactly the same for me you two. Gave up smoking end of last March as a result of last budget and feeling the government were fleecing me! Breathing problems (never had any before!) started soon after and have finally been diagnosed last week as suffering from bronchiectasis. Have always been very active and will find it hard but realise I'm going to have to learn how to cope with this and live with it.
6yrs i quit smoking,then diagnosed with asthma,then had a CT scan discoverd i had Bronchiectasis. It's been a nightmare , also diagnosed with sleep apnea , i have to use CP machine on my 3rd mask,it's so unnatural to sleep like this and there is times when i cant use it, when i'm coughing and spluttering,i feel like i am going around the bend,when you try to explain to doctors,they look at me as if i'm telling lies.I've been on antidepresant's for donkeys year's, they have been changed umpteen time's.also have cronic reflux,diabetas,high blood preasure and IBS,I am tierd and fed up, i'll be 56 on 12 April ,my sister who is 76yrs can run rings around me.(do you think i have any chance claming PIP so i could pay for a cleaner twice a week).
Yet another ticking all the boxes except the oxygen but suspect that is the shoe I am waiting to drop.
Given this is a forum where we are talking to the converted i.e. fellow sufferers I think each of the choices is sorta self explanatory because they are all self evidently life limiting and I'm not surprised that breathlessness tops the charts given the ability to breathe is the most emdiately fundamental requirement of life itself.
That brings me to my contribution to the "other" catagory which I would sum up by the impact on the mind and one's sense of self perhaps partly because in my case I lost the ability to pee properly at more or less the same time marking a watershed in the degree of disability I experience and this is from someone who has been dealing with the impact of a progressively disabling genetic connective tissue disorder. (Ehlers Danlos Syndrome)
So my comment for that is in the form of a question:
If I can't breathe or even pee as well as I would like and need to do what chance do I have of doing pretty well anything and everthing else that defines one as a person rather than a patient?
like many others i have to stop on my way to kitchen ,bathroom etc i live on my own and often dread the phone ringin because if i have just walked from another room i wont be able to talk . i need wheelchair now only go out onc a week but some people dont get out once a weekso im lucky
BECAUSE OF BREATHLESSNESS I HAVE TO PLAN EVERYTHING I DO AND ALLOW EXTRA TIME TO DO IT.
IT HELPS ME TO USE OXYGEN TO ACHIEVE WHAT I WANT TO DO .
I CAN DO MORE AND RECOVER QUICKER USING OXYGEN.
Being on oxygen 24/7 is of course veeeeery inconvienient especially if one wants to go to a restaurant or cinema for a few hours .
I seem to be in catch 22 i have always been a bad sleeper, due to a bad childhood, and if i do not sleep well my chest gets worse, i do not use oxygen and try to walk everywhere but plan in advance to alleviate stress... I have been diagnosed with Lupus as well not in a bad way but it has seemed to knock me for six, but the tablets i am on seen to be making the symptoms less tiring
Although I don't think I am as bad as others, I do have to plan work trips, holidays and even outings with friends so that I can minimise the worst levels of breathlessness. So things like distances to be walked, whether uphill, number of stairs etc.
I don't have a problem with the other items on list.
Lynne xx
Because of breathlessness and tiredness/lethargy I have to remember I can't do things at my usual fast pace. And the persistent cough just gets annoying
Any exertion gradually makes me more & more breathless & tired. It has slowed me down in most aspects of my life.
The breathlessness is very frustrating and I am sure many others feel the same way. I find I have to plan what I do now more than ever. The flare ups are just awful, The symptoms make me feal worse than ever. I find that I have two speads now, slow and stop!!!
i love walking, but Also, tiredness and exhaustion prevents me from doing all the things i would love to be doing, and that causes depression, as someone else mentioned. its a vicious circle. But... we must be grateful for what we can do, there are some good things in life, we must make the most of what we can do.
That came out with some missing, sorry. It was meant to say, breathlessness is frustrating when walking, especially in hills, i love walking but have to pace myself.
My condition is bronchiectasis.Although I do get breathless when doing something suddenly its coughing which really affects me.Its particularly bad and can be quite embarrasing when doing something such as shopping.I do exercise as much as possible (mainly running) which I have always done. Again I am coughing a lot of the time but it is brilliant at helping to clear my lungs
What is there to add as it has all been said in the previous replies
I get breathless just doing light housework,,and can,t stand and do the ironing,,,but go out twice a day with the dog,,as long as i,m on level ground,i can puff my way round,,but the village i live in is on a hillside,,okay walking down to get the odd paper from the garage but getting back home is a killer,,but i have my pit stops,,have not had a chest infection since getting the dog,,maybe all that excercise opens my lungs a bit more,,i like to think so anyway
I AGREE WITH dvdrust ITS ALL BEEN SAID NO POINT IN REPEATING THINGS
Breathlessness is such a shock to the system when previously you have been perfectly fine. Adapting to it has been just as bad; a period of anger followed by grudging acceptance and then finally dealing with it as well as you can with as much humour and positivity as you can.
I cannot get around as much as I used to - I am so slow I feel a burden when in company. Think twice when going anywhere as to difficulty getting to/from places etc.
My youngest daughter hasn't got any patience with me because she says i'm so slow. I used to spend time with my grandson but she won't let me now. It's awful not to be wanted.
get breathless after just a short walk,cant plan what I will do next day,have an embaressing rattly cough,always tired,and when I have an exacerbation all I want to do is close my eyes and not wake up."so much pain"
Breathlessness when meeting new clients, stopping halfway through a sentence because I run out of air. Not walking with my wife because she simply can't go that slowly, she gets too cold too quickly so goes ahead then I try and rush to catch up and make myself worse.
But I can still breath, don't need oxygen and sort of enjoy gasping for breath when I'm on the Derbyshire moors because without some pain there is no gain!
So, overall, I guess I'm really quite lucky.
Compared to a lot of people on here I am in fairly good health so far....
in 18 months i have had 17 lots of anti biotics for infections, it's very hard going with an infection, 2 kids and daily life.
The other issue I have is tiredness, I tried to fit in some chill out time in the day but it has made me change what I do for fun.
My cough has always been a problem even when I was working, it is frustrating and causes embarassing mishaps and todate no one has been able to find a cure as they say.or something that releives it completely. Tiredness is a constant problem that causes reduced ability to do things and slows you down. I,ve found ways to cope with the breathlessness but it is another symptom that restricts ability.I get pain round the lower areas of my ribs and midrift if I hasten whioch only adds to the arthritic pain in my joints which can stop you smiling some days.But still my health is far better than some others with lung conditions so we have to take the good with the bad and keep soldiering on
Breathless just sitting here in my chair. Wondering just how bad I actually am now after reading so much about people going for walks!
Did half an aisle in Tesco today and back to the car, gasping for 20 minutes or so, leaving my wife to shop alone. Looking at the Preseli Hills later and wishing I could run along them like I would have done 10 years ago!
But hey ho! A nice nap and trundle back to my chair here in the kitchen... where I sit and gasp again! Thank god we live in a bungalow!!!
Perhaps I'll go see the gp!
I get very frustrated because i cannot do the garden easily or help much on the allotment, I cannot cook for the family without help, and although I loathe ironing it annoys me that i cannot do very much in one session which means i seem to be ironing all the time. I cannot walk uphill easily, and holidays abroad are limited. Also get very tired but I am not one for sitting doing nothing,I have to learn to slow down but it is very hard. Generally though i'm not too bad, no antibiotics for a year or so (touch wood) .Also on oxygen 15 hrs a day which can be a pain when the tubing wraps itself around your ankles, or your other half trips over it and strangles me.lol,
Can't walk more than 20 yards without having to stop and have a 'blow'. I slow down everyone with me, even my wife goes on ahead before she realises I am way behind! Just rubbing dry after a bath is an ordeal - my wife has to help with lots of 'normal' activities! Yet everyone thinks I am doing fine. No one knows what it is like unless they are experiencing it for themselves.
Breathlessness is so restrictive in everything that I do. I get up in the morning and have to sit on the edge of the bed before I am breathing evenly to start getting dressed and this can take about half an hour and that is with everything laid out to hand. I use a stairlift to get downstairs and that puffs me out getting off it and parking it then to sit down again. I eat my food and I get breathless so that puts you off eating. It is a vicious circle. i do do my exercises to help with the recovery of breathlessness. I have just spent 8 days in hospital with pneumonia and another 7 days under the district respiratory nurse at home. Excellent service and it does get you out of hospital quicker. I can only walk from one room to another and then have to sit to recover.
i cant do anything i use to do i cant play football with my grandchildren because i get out of breath to quick i cant get on and do my house work with out having to sit down regular i also get infection after infection and i don't use oxygen all i have is inhalers which don't always give me re-leaf i want so siting down at regular intervals is only way
The main things for me are breathlessness, tiredness, poor mobility . depression and frustration at not being able to do simple chores etc.
But at 73 I suppose I must not moan too much there are people worse than me who are a lot younger. I plod along with my tin of medication and my oxygen!! and keep as well as I can,
my grandchildren keep me going.
i find even getting simple tassklike going to the loo is mkingh me gasp i panic cant do any thing sitting indoors most of the time and very nasty to hubby in which its breasking my heart because hes a dream but just so down and depressed i get so scared
Being breathless most of the time becomes very embarassing when out and about, can't walk very far without stopping to catch my breath. I feel tired all the time and cannot perform normal household duties or shopping without my husbands help. I am on seratide 500, spiriva and small blue inhaler which I use whenever needed, whiich is more often these days. Coughing takes me by surprise at the most awkward moments, especially while eating and feels as though i am going to choke, phlem is difficult to bring up.
As above ... Dont seem to have lung function yo comment ... And everyone as said 
My son Marcel who has asthma & excema has improved with not coughing so much since being prescribed Singulair and he can sleep through the night without coughing but he can't go without this medicine yet as has been proven lately, his prescription ran out so before he would go without I had an appointment for Marcel the same day,once we got to the chemist I was told they had none in stock of the above & to come back in the morning, well my son went without that same night & was constantly coughing untill he was nearly choking! so luckily there was some anti-histamine leftover so I gave him half the normal dose because of his other med's & he calmed down & went back to sleep, have let the doctor know about this & he said he won't take him of the singulair yet untill at least the weather gets warmer but to bring him back for another check in two months time.though he's alot better without the coughing he still has an irritating sound from his throat every now & then like he has mucous stuck in his throat it sounds like he's trying to clear his throat!Does anyone else have this problem?I know he can't be the only person with a sticky throat best way I can describe plus his throat is constantly sore looking most of the time & he always looks tired, though he has boundless amounts of energy & looks quite skinny but the doctor isn't concerned about it even though it's been seen how thin he is! It's really worrying! or now he has to keep taking his brown inhaler, the singulair & the blue inhaler when needed! I have gone through the list of people on here & it's terrible how many people are struggling with their health,I wish you all well!
I hate being so breathless, can't walk far without puffing and blowing, husband gets really frustrated and is always about 100yds ahead of me LOL! I am ok at a very slow pace.
The cough can be awkward - recently went to see a friend make a pilot radio show and had a coughing fit during one of the guests numbers. Tried to cough when the music was loudest - I wasn't able to leave as I was on a table in the middle of loads of others.
I do seem to be tired and sluggish all the time. This could be due to the weather - don't want to go out when it is so cold and the grey skies are just depressing.
Breathlessness is embarrassing for me when I am out as people stare...all you are concerned with is getting breath back and sometimes I have to bend forward (like a runner) I wish.People do not know much about this illness, I did not till I was told !! I also have very little energy and really force myself on good days to try and do things,only to get soo out of breath I have to stop and recover.It affects every area of life for me from going out planning where to park,checking the weather as cold and heat bothers me.I am only in my fifties and see people much older than me doing everything.Still I have a lovely husband who looks out for me all the time,so I am very lucky.
You sound like my husband, he is 61 and I am 59 still employed full time. He is still on sick leave since before Xmas when he nearly was'nt here due to a very severe exacerbation, he will not be returning to work. we are adjusting at the moment to a whole new life but it is very hard because out here in the world it feels like we are the only ones going through this, yet from what I see on this sight (thank god for it!) we clearly are not.
I get breathless during exercise and this often triggers my cough
I did get infections easily but this winter, I've been taking Azithormycin 3 times a week and I've been much better.
I get tired and feel drained of energy quite easily although, I sleep well at night (8-9 hours).
I get a lot of headachees these days too
Getting breathless when doing minor activities. Need to be more positive then I think I would go out more, tend to have given up a bit. Get fed up constantly dragging my oxygen tubing behind me, get annoyed with it. Worried that I didn't feel like this last year really feel that I need to pull myself together. Sleep well, no cough, and don't cough much up. Feel very guilty that my husband has to do the cooking, cleaning etc. and he still goes into work, he is great and for that I am thankful.
Up till 4th Feb (since Nov 2011) I have had one infection after another with all the debilitating effects various anti biotics and steroids brings. Since my referral to a consultant and subsequent treatment I am hoping that this cycle has been broken. However, I now feel that the last 18 months have resulted in a big deterioration in my condition.
I think we need a questionnaire to cheer us all up. How about " What aspect of your day to day life makes you happy ! "
I have lots. My partners cooking for one. She does good healthy tasty meals. Feeling the sun on my face when it decides to shine. Watching the new spring growth. Going to see my grown up kids once in a while and having a good laugh with them. I could go on. 
Well said.
Awaiting placement on lung transplant list, so one of the very lucky ones - that is not to say scared stiff. Back to the poll, breathlessness, coughing and recurrent hospital admissions are main issues. Until a couple of weeks ago, managed to stay clear of hospital admissions for 11 months after 10 in the previous 12 months.
This was after I was referred to Harefield ( for transplant assessment) and Royal Brompton where I was prescribed and continue to take Azithromycin ( one tablet, three times a week). This would appear to have helped me, but I am aware would not be suitable for all and, indeed, I believe there may be very differing views amongst experts because of possible side effects.
Apart from obvious effect on mobility, my main problem (living alone) is motivation and mood swings, though I have good friends and family. I can get about with difficulty on ambulatory oxygen, but my walking is severely impaired on exertion.
The other main thing is difficulty in making 'phone calls, particularly to unhelpful call centres!
Additionally, I find I become very irritable, very quickly, due largely to frustration at shortage of breath. Unfortunately and only to add to my guilt feeling, these episodes are very often directed to those who love and try and help me most.
I am also pretty much IT illiterate and found my laptop particularly frustrating. However, with the possibility of a long stay in hospital if transplant proceeds, I persuaded myself that an iPad or other tablet device would be useful. So it has proved, I can manage nearly all my affairs from my bed, with much greater ease than a computer. It took a lot of help to set up accounts, on line banking etc, but once done what a difference.
I am of course lucky to have been able to treat myself to this, after considerable self persuasion and not everyone is so lucky.
Keep your chins up all, good days and bad - easy to say,I know.
BLF and everybody, keep on the fight for DLA and against DWP. Who needs all that extra anxiety when going through this.
Love,
Charlie.
After reading your story Charlie... I feel so less hard done to!!!
I know that getting the benefits that one should be entitled to is VERY frustrating and is NOT what we need to fight for with all we have to cope with already. Luckily I am Ex Forces and had fantastic help from the British Legion through the CAB
I hope that all goes well for you on the transplant front, and keep ya chin up 
I hate being breathless when trying to do the smallest of tasks
If there is a bug doing the rounds I alwas seem to catch it
I permanantly feel tired and lethargic.
Being breathless all the time slows me up and I always seem to have a lot to do! It doesn't help at all when partner yells at me to stop doing whatever I'm doing because I am out-of-breath! It's true you learn to live with it and adjust to doing things at a slower pace, I am eagerly awaiting my oxygen assessment for ambulatory oxygen so I can carry on doing as much as possible and I am over the moon as I am on the list for Pulmonary Rehab!! whoopee!
I've heard nothing but good about it and I have recently bought a great book called The Tao of Natural Breathing, it is inspiring and the breathing exercises are helping I'm sure.
Luckily for me I live out in the sticks and manage to avoid infections well. I also ticked tiredness, I am exhausted most of the time and I am always falling asleep by ten!
Shall try find that book - could do with a bit of inspiring at the moment - it breaks my heart when my little grandson copies my breathing noises. At two year and 5 month though he instinctively has taken over the laundry, by pulling all the wet washing out the washer and pushing it all in the tumble dryer for me. Lol but he likes helping at the moment, let me hope he enjoys that for a long time
Its the depression, the sadness and the remberance of things that I use to do and enjoy but can no longer. Its the continued complaining and the stoic demeanour of my spouse without whom life would likely be impossible.
My complaining not my lovely wife!
Being on oxygen 24/7 stops my husband going out as much as he would like.
Being constantly tired really gets me down. I wake up feeling like I never had a wink of sleep. And no amount of exercise gets me any fitter.
Not being able to get out and about more and as I used to do!
Another weekend arrives, another chance to do the jobs i need to do, but at a pace that i can control,now we can hope the sun shines, and my nippers come over with their smaller nippers, hope they don't expect me to play football
The constant tiredness and feeling of lethargy is frustrating, along with barely being able to walk anywhere without having to keep stopping. I feel like I am grieving everything that I was once able to do. Watching my husband busying himself to do the jobs that I once did makes me feel utterly useless. Oh and the depression! It comes and goes with some days worse than others. I am sure this horrible weather is not helping all of us in this situation. So looking forward to a bit of sunshine.
you have just summed up exactly how I feel. Easter has been hard for me this year and I have spent a lot of time in my room crying, sorry you feel like this but somehow reassured that I am not alone or a freak for feeling depressed. x
I often have difficulty breathing and must use a rescue inhaler. I DO NOT that my lungs are incurable. Others have been healed or have healed themselves and I know that I can also.
Does anyone have anyone have experience with AIRNERGY. I have seen testimonials.
Please let me know.
The breathlessness is my biggest issue - mainly because I find it so frustrating! I am 42 and I look enviously at 85 year old women bent over with sticks walking more quickly and barely drawing breath! I can cope with everythign this disease has thrown at me except the frustration of not being able to do the things I did 10 years ago. I hate that my husband treats me like an invalid and won't let me do stuff when I am perfectly capable, yet I also hate it when people look at me and go, you got asthma? I hate that I live with what I have and have got used to it and then sometimes, just sometimes I will have the rug pulled out from under my feet with the realisation that my lungs are knackered. I recently filmed my nieces jumping on their trampoline. Playing it back I was mortified at how loud my breathing is - not because I am breathless but because this weird narrowing of my tubes makes me sound terrible - little things like this force me back to the realisation that I have lung disease and makes me think how others view me. I find being breathless the most frustrating when I have to go to a meeting and I have to set off earlier than others or when colleagues book a meeting room two flights up with no lift. I'm lucky, I don't feel tired, I have a fair bit of energy and I am lucky I don't suffer from depression. Sorry this has turned into a real rant - mainly because I have no one to rant at. Thanks!
marie x
Hello Marie, I was always fit and healthy and NEVER smoked... It takes a great deal of getting used to being breathless for no real reason other than going about your normal daily life. I had a thoracotomy about a year and a half ago and suffer alot of pain along with the breathlessness...... Double whammy Lol
It's good to have a good old rant luv.... Get it off your chest... Pardon the pun x
Having spent the majority of my working life (ex trawler man and ex armed forces) outdoors I got very used to all sorts of weather. Nowadays with shortness of breath, I find myself unable to walk the distances I used to walk and have had to curtail my time outdoors. Areal pain in the a.. !
Know what you're going through matey.....it's hard to get used too ain't it.
Hello readers,
Blah, blah, blah and to a long story short.... the Hospital found lumps and a collapsed lung on my left side, I had Thoracotomy Nov 2011. Diagnosed with Bronchiectasis post opp' I have found life a bit of a struggle to say the least... not only with the condition and other medical issues , but fighting with the Welfare system..... Ha Ha!!! what a joke that is!!!...anyway, I digress.
I look to the outside world, to be a healthy strong individual, but I get very, VERY breathless doing the smallest of tasks. I walk like an octogenarian in treacle, so I don't get out of breath and bring on the sharp stabbing pains that accompany the breathlessness like a jealous bride. To all watching as I make my way down to my destination a shot distance from my car.... they must think that I've messed my pants and going to the nearest convenience to clean up!!! I'm making light of this only to hide my embarrassment.
To be honest, I am finding it hard to cope with. I always been quite fit and worked all my days from leaving school 'till all this happened. It's painful to the extreme, I'm left breathless all the time and the amount of infections would leave Carol Vordaman confused. I feel completely knackered all the time but find it hard to sleep..... explain that Einstein!!
So, that's my moan for the day out of the way.....
Seriously though, who has been through a similar experience and feels like me... Let me hear your story so I know I'm not alone!!
Hugs, Darryl63 x
hi darren163 im new to this but im no where as poorley as u but i was a very fit person kept ponies and horse my husband passed away 2 years ago plus my mum but then copd hit me why i try to walk around my land but o well i go to the clinic 2 times a week when i think i can do it dont think they are very happy with my attendance O well i try do u think life can get any better ?
Hi there Niki,
So sorry that you're going though such a terrible time kidda, you have such a lot on your plate at the moment... I imagine it is such a struggle to cope when you're on your own. I'm lucky as my 18 year old son lives with me and helps quite a lot, but he has his own life now with college and working part time at the weekends etc.
I'm sure that things will get easier, given time..... It's not as simple as it sounds though I know, but try and stay positive sweetheart...... AND keep on with your clinic appointments Niki
Hello Darry, yep, guess most of us can relate to the breathlessness including me - I so hate that it can stop you in your tracks - literally, even when walking at the slowest speed, makes conversation difficult, if not impossible and can take the edge off even the tastiest meal. I used to be quite active once and living in the countryside had always enjoyed long walks, horse riding and looking after my rather large gardens. I then had two severe asthma attacks back in 2000/2009 and now have copd. Stopped smoking for good 5 years ago.
Again most of us here are likely doing battle with jolly old ATOS and other benefits to which we're probably entitled but always have to fight so hard for.
Have a lot going on this end just now , both with circumstances and medically and I can definately feel another blog coming on , lol. In the medical sense there appears now to be an added issue regarding the copd which is to be investigated further.
Meanwhile I was wondering what caused you to have a collapsed lung? I guess the op itself and the the bronchiectasis has took its toll and left you more open to infections - which must be hard to deal with.
And remember...you're like the rest of us here - We never moan...we just express ourselves : -) Lovelight x
Hi there Lovelight, thanks for your reply..... it looks like we all seem to have the same underlying problem.... namely ATOS and the Welfare system. I think that its probably a big factor in prolonging any recovery process, as the bloody frustration and stress can almost send one to the point of saying a swear word...... oops!!! I already have!!! Lol 
Well Lovelight, I have never touched a ciggy in my life.... the only one never to have smoked out of 6 kids to my heavily smoking parents. I think when I was born and the Doctor slapped my arse, I took a 10 minute cough to clear my lungs. The 60's were like that I suppose.... mothers still smoking during pregnancy. I'm not for one second blaming that by the way... just having a laugh.
What caused the collapse (as far as I can make out) was non-malignant growths in the upper left lobe which restricted the lower lobe causing infection and collapse. The Thoracotomy was and still is painful to the extreme, after poor service from my local pain management team I have only just recently transferred treatment to The RVI Newcastle.... they seem so much more switched on!! Hip! Hip!
You keep fighting and keep your pecker up okay Love....light xx
: -) Like the sense of humour...it sure can help keep us going. It's too bad you have these kinda heath probs, especially as you've never smoked. Aawww - life really can be a bitch and then we....oops, .just keep on going on!!! Here's wishing you all that's good xx
It is the breathlessness that really gets to me I can cope with the tiredness and lethargy and my infections are no where near as bad since my meds were all changed. Because I live on my own I get very frustrated that due to the breathlessness I can't do things and have to get people to help me and this costs me money which I should be spending to enjoy my retirement.
hi jandan i know how u feel im on my own now but u have to pay for everything because no one will do it for free or a drink its all money my d/washer has gone wrong read the book tried to sort it out but alas no joy O wow more money dont know if u feel like me but we need a sugar daddy dust his head off give him cups of tea etc try and smile and laugh cant do it in the mornings but as the day goes on i feel a little more myself x
I bought myself a second hand electric scooter ( there are plenty on the web or EBay )
It was a great decision, giving me that extra freedom and the ability to travel without gasping for breath all the time.
I could even take my dog out for his sorely missed 'walkies', keeping him on a short lead.
My Oxygen bottle I can stand in the wire basket on the front, just in case......
Highly recommended way, to help combat breathlessness....
this year at my annual lung function review my result was mild to moderate COPd which I am very pleased aboutmy GP and surgery nurses are excellent ican refer to them at any time and can get same day appts they make sure I have reserve supplies of Prednisolone and antibiotics in case I have a flare up which I have had this weekend and I know when to go to my local hospital.i know I am lucky to have all this support I can do all I want to do I try to exercise and do lots of walking my advice would be not to be afraid to exercise and get breathless its doing you good and also try to get on a breathe easy course if your local NHS pr..ovides one the one I was fortunate to go on provided me with lots of advice and support.its just the coughing which annoys me can be very embarrassing at times but just got to live with it
After a viral chest infection which I contracted in November and a recent bronchoscopy,I've been diagnosed with a partially collasped lung my medication is Mucodyne 375mg but the cough spasms persist producing green plegm.Will only see consultant in June. What can I do to help myself?
When I get SOB+++ not only does it significantly reduce my mobility but it plays out a senario in my head that this breath is my last one because I can't get it past my throat into my lungs
Am I the only one that would answer this totally differently in say, January to July. January's answers: coughing, sob, exhaustion,depression,infections,immobility ,mucus all really bad
July's answers: breathlessness, tiredness. Roll on summer
Breathlessness is so frustrating and frightening. I often have to force myself to wash, dress, make food, etc. It takes so long. It would be so much easier to just lie down and rest!
But I do feel so much better when I've achieved any of these.
its not so much the breathlessness that bothers me just the coughing can be very embarrassing at times usually exacerbated by change of temperature or being near someone who smells of cigarettes some public places can be a nightmare eg buses cough when exercising but that's ok always cough when wake up in morning but count myself very lucky when I resd what others are experiencing
I am a newbie to BLF. After leading an active life both at work and socially / sports i find that shortness of breath makes me angry. I will not give in to emphysema so i try and keep busy most hours of the day and exercise as much as i can. I am at stage 4 with FEV1 23% and i am 69 yrs young. May i suggest the following web site (org) I have found so much inspiration and knowledge from the members.
I try really hard to be independent but in fact I have to ask for help in most parts of daily living . I'd love to go for a nice brisk walk. More like a slug. Always tired and sleepy except at night in bed. Oxygen does help but I'm always getting caught up in the cable or taking my nose off when it's caught on something !
Tiredness, if I catch a cold now it turns into something more and takes longer to get over, always short of breath worse in the winter time.
I get so breathless i have to stop what ever I'm doing regain my breath and try and carry on it is the only way I can do anything and that is when I am in familiar surroundings, don't go out much, only to hospital or pulmonary rehab which I am just starting.
Tiredness because cough breatlessness mucous I can cope with but fatigue I find a pain. Infections I'm lucky with, so far not many.
ok when i am just sat doing nothing , i was very active , now slightest exertion and i`m s o b
Breathlessness. Doing the day to day things that people take for granted. I don't find the oxygen hepful but seems to just make me cough. I
I find with my RLD the breathlessness is the worse part as I do not know when I will suddenly be empty. I pushed my limits once and blacked out.
I cough quite regularly, regardless of whether I have an infection or not. I produce excess mucus on a daily basis, several times a day. I have had 19 chest infections in the last 24 months. Due to the number of infections and the coughing I feel tired a lot of the time. I have had to change my job so that I now work shorter hours and work from home rather than going into the office daily.
going up stairs takes me half an hour
Not being able to do the garden and walk. Anytime I try i just end up so breathless and frustrated.
Annie
I hate this illness as I can not do at least 80 percent of what I use to do mornings are the worst and night times as the cold weather is a lot to do with it so heating is on most of the time and doing wife's head in as all I keep asking her is can I help and she says no as she rather do it her self as she do not want to go to a and e
I cannot go traipsing like I used to- a day out exhausts me and I have to rest the whole of the next day. Given up dancing, my work which I loved, and housework and gardening are hard to do. I just do not have the breath or energy.
Breathlessness is my biggest problem, I seem never to have enough to complete the simplest of actions
In a nutshell I am (I feel) permanently in a state of having just come off a course of steroids and antibiotics,
Oxygen is my other big problem at home and connected I can function. Out and about without I am a wet rag. waited since Easter to get an assessment date for ambulatory. am on 4lp/m . continuous don't have much carrying power for cannisters.
