In what way(s) has your lung conditio... - Lung Conditions C...
In what way(s) has your lung condition most affected your life? Feel free to select multiple options.
Hi folks,
Thanks for your input into our latest poll above. It's not a definitive list, so please feel free to mention other ways that your condition affects you too in the comments section below.
Best wishes,
Ben
Much less energy now and have to allow more time to get things done.
and just a thought - will someone please notify the delivery men/women that it takes much longer to get to the door..... thank you
Worth asking your regular postman if there is a way to register that you need more time to answer the door, I am registered with Morrisons for home deliveries , my electricity company and have the option of asking companies when buying on line to put the information on the parcel . I wouldn't put it on the front door though.
Thank you Joyce74 - I will certainly take your advice.
All the best
Mary x
I have an external disabled lift plus there is also grab rails it’s very visible that a disabled person lives in the property. I have an entrycom I answer the buzzer and say I’m coming despite all of this they will again knock and use the entrycom in a very impatient manner, when I finally get to the door they are not interested in seeing disabled equipment their response is that they only get so many minutes for each delivery, so my response is that I have choices and I certainly won’t be using your service in a hurry I now also ask who the courier that will be delivering if it’s one on my list I say no thanks please cancel my order and request that the courier company staff be given disable awareness training at the end of the day as disabled people like all others we have choices
I have been there myself so completely understand your frustration.
I now have a note on my front door, letting delivery persons know that I take longer to get to the front door.
I also have an outdoor cupboard next to my front door where parcels can be left, if I'm unable to get to the door, there is another note on the door telling the delivery person about the cupboard 😉!
I also have a note with my phone number on, telling the delivery person to call me if they need a signature. I can be so unwell that I am often in bed during the day. When this unwell, I won't get up to open the door unless I really have to! God bless the outside cupboard! (I'm in a very secure place but an outside cupboard might not be an option for you.)
My notes are attached to the inside of my front doors window but if you have a solid door then best to either laminate the note, or tape it inside a clear plastic bag, so it won't get wet.
Hope these ideas will help, Claire 😀
Thank you and I will certainly take on board some of your suggestions. It occurs to me that many of the delivery people working as couriers don't speak or understand English and are also only concerned with getting their deliveries finished as soon as they can.
Thanks again
Flossie20
You must use Amazon??!! 😉
Yes your right, that is a major issue but the notes on my door have definitely helped.
If it is amazon thats the issue, then please raise a complaint with them and insist on being called back by a UK customer service manager. I mean absolutely insist on someone in uk dealing with your complaint. Explain that you are in poor health and that you rely on the things you need being delivered to you.
I had a uk manager tracking all of my amazon deliveries for a while and he also contacted the delivery company and had them put notes on my account. It's definitely helped with my deliveries from amazon but you're right, there are still some drivers who don't speak English, or some who are just in such a hurry trying to deliver far too many parcels in far too few hours!
My landlords are my neighbours and have often taken packages in on my behalf, do you have any friendly neighbours who can help perhaps?
Ha ha ha....Amazon how did you guess!! Xxx
They were fine when they used DPD but once they made their own delivery company the main courier, it all went to pot!😵
Yep you're so right there....I buy and sell a little on eBay so regularly use couriers and can't say one good thing about them. If their faces got any longer I wouldn't be able to close the door! Lol
Xx
It also takes longer to answer the house phone! I find I am usually at the top of the stairs when it starts to ring.... 
Hello everyone,
I don't feel confident enough to go out anymore and as I live on my own I get quite lonely.
I fill the day with housework - it takes a lot longer than it used to, sewing, reading etc.
I potter in the garden but what was once my pride and joy is slowly going to pot!
I am just so tired all the time.
Same as you re the pottering in the garden, I used to love it! Now I have a Gardner who does all the garden stuff and I have to be content with just sitting and looking at my garden.
The trouble is, even with my oxygen on just getting myself to the garden chair is still a major struggle! 😢
I am the same as you. I used to be able to look after my own big garden but now my friends help. I am very stable at the moment but the word stable means different things to different people.
I judge how well I am doing by my near death experience in 2015 which means that even when I have some problems, like being slower than others, I still assess myself as being stable .
It is very difficult for healthy people to understand the draining effect of lung disease.
Oh Grandma C
I used to love my garden but like you I became less and less able to look after it. It is now desolate as far as I am concerned. My son has cleared it up and keeps the grass down. No shrubs no bushes no trees. No dead leaves making a mess. For me it just means nowhere for birdie tweets to gather and eat and bathe and even squabble. I also don't leave the house and haven't for a few years. I am so sorry you are lonely do you have any carers or a day centre that could help you.? What about age uk or the salvation army or the red Cross. Please keep in touch. Patsy xxx
Patsy,
I am so sorry about your garden. It is terrible that there is nothing left growing except grass. At least I still have the birds visiting both for food and water. The young ones line up on the fence watching mum and waiting till it is their turn to have a bath. Whatever possessed your son to dig everything up ? Have you considered having some evergreen plants / shrubs in large pots. They wouldn't make a mess and there would be minimal weeding and pruning.
I do not have any carers as such. I have a mobile hairdresser comes weekly as washing my hair is something I struggle to do myself. I am currently exploring the possibility of getting some regular help in the garden but finding someone reliable who is not just a man with a mower is not easy.
Carole xxx
It very debilitating and I'm out of breath all the time. People around me Don't seem to understand how I am feeling
I don't feel my doctor is very understanding.
Less energy
after being fit for years it is even hard to watch other people exercising.
Extreme tiredness on exertion along with muscular pains
I was always independent,busy ,loved walking . I looked after my mum as she grew older and frail . I feel very lucky to have a husband and two loving daughters who do their best for me . Life can still be good ,just in different ways . I just wish I could breathe better 😁
My life is restricted in as much as I'm nervous of crowded places, i.e. cinema, theatre, buses and trains, etc. etc. etc.! I have a cold at the moment and no idea where from but it affects me more than healthy people and I'm just knocked out. I'm underweight so not strong and a dietician came up with all sorts of solutions which has now sent me into pre-diabetes! Just feel I can't win.
I hate everyday, as everyday is the same as the day before. A person says, be thankful for what you have not what you have not. It sounds awful but I will say it, I have four walls. Usually the person ,people who say that have very busy lives.
Constantly feel under the weather.Flu like symptoms
Early all of the above replies it effects us all in all the same way as discribed ! x
Less energy. Often feel abnormally tired. But keep cheerful. lots of people much worse off.
Very tired all the time ,less energy on excersion takes longer to do simple chores .
I feel embarrassed in public places as my coughing sounds horrible to others
I'm the same people are so rude and stare ,even say things like you should give the cigs up, I've never smoked in my life but even if I had what gives people the right to comment , I'm now on oxygen whilst walking, and you see people stare , it does knock your confidence
I am a non smoker too, my best story after being diagnosed in hospital, many years ago, I kept meeting a young trainee nurse as I walked round the hospital. The consultant eventually told me he didn’t believe me that I didn’t smoke and had the poor girl follow me to make sure I didn’t go out for a crafty smoke...
It makes me mad , when they don't believe you x
What's with doctors who don't believe you?! It's beyond frustrating.
Please don't let it stop you from going out. Seeing the oxygen often brings out the best in people offering to help .
I agree linnie I have often gone home crying due to people's attitude, don't mind the children I asked them if they want to look as I don't want them to be ignorant like some adults are x
Extreme exhaustion.
Unable to clear mucus despite medication.
Hi Poppers.
I have a similar problems. I take Carbosistene two three times a day.
I also do chest clearing exercise at least three times a day. Every three or four days I use a nebuliser with saline solution.
This seems to work reasonably well Although sometimes my chest is still tight.
Hope there is some thing there to help. Best of luck
Malcolm.
My husband is the relatively recently diagnosed patient Steamer, he can't get on with carbosistene and as yet exercises haven't been suggested. . thanks, I'll check them out online. A nebuliser hasn't been mentioned either, but I'll put it on my list of queries for next week when we're due to see the respiratory nurse. Cheers!
From the age of 12yrs I played sax, clarinet, flute, trumpet and valve trombone. At 80, I've now had to give all of them up
I used to walk whenever possible, now I cannot. I find I get more frustrated at not being able to do all the things I used to do. I also feel pretty useless.
Lung deficiency affects everything because you need to breathe to live. It affects my social life because I am prone to infections and people think a little cold or chest infection is nothing so don't think telling me they are infectious is important, even though it not only near kills me but also diminishes my lung function each time. I fear people! Going to a supermarket, having family round (especially grandchildren), seeing a friend can be life threatening. So it's very isolating. Then when I do catch something I am left completely bed ridden and near death with pneumonia from a "little cold" and completely isolated because I'm too ill to let anyone know. And by the time I'm well enough to contact the doctor I can't get an appointment because you have to sit on the phone all day trying to get an answer, and by the time I do get through all the appointments have gone.
Holidays, outings etc can never be sure il be well enough to go so can't plan ahead.
Everything is hard work!
You need to be really strong to have a lung condition so I don't recommend It!
Walk of 12 yards feels like 100 yards flat out. Doing anything needs planning. Can go out but takes about 20-30 mins to get ready but once in the car and 'breathing regularly' I can drive quite comfortably. Coughing leaves me absolutely knackered. Clearing mucus is hard sometimes, usually at night, despite being hydrated, and medication. Aches and pains of various kinds and intensities. Spent a week in hospital in May for really severe back and chest pains which curtailed my breathing even more, Turned out to be 'musculo-skeletal' but it was agony.
Told by two different doctors that I have reached the end stage of this disease. Only remains to be seen is the when and the manner of my going. At 82 years and tired of struggling I'm ready. Only drawback is I won't realise any benefit from not being breathless.
That's life..............
Lots of love coming your way xxx
Many thanks for your thoughts. In a way I am lucky in that I get to put my affairs in order and appreciate family and friends more. Can't all be bad.
Oh that is sad I am sorry xxx
Thanks for your thoughts but don't be sad. I'm not. I've had the chance to put my affairs in order, which needed doing, and the chance to appreciate family and friends more.
Sending love to you dak1507 xxx
I'm much more restricted in what I can do. No holiday for 5 years. I have to plan exactly where I am going and how to get there. Anxious about crowds and catching colds.
Can’t make a cup of tea without trying to get my breath and it’s getting harder I have worked most of my life on the farm and that was hard but not as this is making it hard
I get out of breath more easily and Holiday insurance is much higher
ive found that. why should we be penalised.
Feel very controlled and unfree by it. Am I on the right medication, hope I dont run out, hope I dont forget it going out, my coughing attracting the wrong attention, can the neighbours hear me coughing, I could go on and on.
What about asking folk what they do to manage their condition with a number of tick boxes with statements like " I have taken up a hobby",I walk a little more each day,I try to learn new subjects.I try to exercise sitting down every day,I enjoy reading,I play board games wiith my friends.etc.
I may be talking nonsense but it seems to me there may be a case for incentivising your subscribers in some way?,
That's a great idea locheil. Maybe we can do one on what people do to manage their condition and one on what people do to stay positive. Watch this space!
Grieve for the old me
The shortness of breath makes some things a bit more restrictive but my strategy is called”push through” and some days I really look forward to it getting dark so I can just go back to bed and take my meds and knock out. Life is still good just have to adjust and adapt to things in a different way on some days. I laugh as often as possible I find it helps comfort.
Hi
Weight gain from lack of exercise and not working is my problem - it’s easier to sit down than go for a walk but just writing this down has made me realise I must and can push myself to to a bit more.
Taking so long to do anything .Can't even walk at a normal pace .Constantly tired and never seem to have enough energy.
Hard to cope with the tiredness.
I wish i had never touched a smoke this disease is awful not enough people u derstand how hard simple tasks are
I used to enjoy our garden, potting plants, until I developed blood clots in both lungs, twice, over 4 years, totally affecting my quality of life. Cause? Neighbour who takes delight in coming out to smoke every time I open the back door. Even her husband watches through a carefully partially opened curtain and tells her "shes out there", whatever time of evening I try and water plants! GP, Chest Clinic and Respiratory Consultant have all confirmed this was the cause and not a DVT. Neighbour has told me its a fake cough! From its worst earlier this year I have needed to wear incontinence pants as the coughing 24/7 damaged my bladder. This impacts on going out, holidays and outdoor hobbies. Previous neighbour smoked near our door, until I nearly died due to incorrect diagnoses by GPs then someone told her and she moved away to smoke. This one could not get closer to our door, and we get her butts in OUR garden, was counting, over 100 in less rhan a month. Not to mention the ones on our drive outside our fence. She even left a one burning on a plastic chair next to our fence, even my husband's breathing was affected by the smell, I could not even go into our bedroom for hours. Of course her windows are shut when she smokes. Sorry for rant but this is how my quality of life is affected in our own home!
Everytime I move I have to carry oxygen, the canister is heavy my shoulders and back hurt constantly from the weight of it
Ditto Linnie13
I have Ehlers Danlos Syndrome and so have very weak joints and pain everywhere. I find pulling my portable oxygen concentrator round the house with me and trying to carry the cylinders when outside, exhausting and very painful.
The extra exertion causes me to be even more breathless and also pushes my heart rates even higher. My carer jokes and says that I need extra oxygen to help me to cope with my oxygen!! 🤣
Speak to your respiratory doctor about the pain that carrying the cylinders causes you. I did and he prescribed me the infant size cylinders instead. I still struggle with these, mainly because of the poorly designed bag you get with them. The bag always tips backwards because the cylinders are top heavy but they are still so much easier to carry than the adult one.
Good luck from one very sore person to another 🤗
Claire
Weight gain! I have lost all my confidence and never want anyone to see me.
I used to be a very svelte uk size 8 but now due to hardly being able to walk more than a few meters even with my oxygen on, the weight has just gone up and up, despite having a very healthy diet!
I have other issues too with very high heart rates on minimal exertion, so it's dangerous for me to try and exercise.
My sister gave me her old Fitbit and it often tells me that I've burned 2500+ calories a day because my heart rates are up in the fat burning and cardio levels all the time! I eat between 1200-1500 a day and so I should be steadily losing weight but I don't, its soul destroying! 😖
Having to sleep upright
Hi Ben, for me, the hardest thing to cope with has been taking early retirement due to poor health. I absolutely loved my job, now I am at home, on 16 hours of oxygen a day, and hating it! Plus, I am finding it extremely hard to cope on my works pension.
I was always a very active self employed hard working person but I have been grounded by the illness Emphysema and COPD since respiratory failure and 19 days in intensive care and pneumonia of almost 3 years ago. I have learned to adapt and accept my situation and to be grateful for my wife's love and support. This site has been very helpful in educating myself and so coping better with the effects of the illness.
The most annoying thing is communication with GP, l can appreciate spoke are more fortunate than others. I believe this impacts anyone on their own. There should be a database for people a with lung disease.where all medical professional can gain access .
The gradual loss of independance is very hard to bear. Trying to stay cheerful and thankful for small things also becomes harder but important in order to retain some of the person you used to be. I am lucky to have a loving and supportive husband and family and my heart goes out to those who have no one to support them in this awful illness.
Hi, perhaps a database with information for all medical professional to gain access to view and advise.
This has been a really interesting read seeing how we are all affected in different ways. Fortunately each reply means a person hanging on in there one way or another! I admire you all for coping. xxx
Am mentally physically socially incapably or fit anymore AND it’s to let to drink 🥤 my self silly 😜 as can’t drink on my meds can’t eat good food coz of ibs
Everyday the list of can’t do’s grows and list of thing’s could vanashis along with my lung function.
So on a hole don’t think things could be any better as you try keeping fit then muscle have fits and go numb.
I worry about the future and the impact it could have on my family and friends.
My COPD has gotten much worse, so all those issues in your poll affect me today. I'm in the fourth stage and on oxygen but not 24/7...when I exert myself is when I need it. I need to get hold of a portable oxygen thingy!! I am currently having to carry bottles around which can be heavy for me. Anyway it is what it is.
No boxes ticked. The statements are mostly phrased too negatively for a milder bronchX sufferer and ticking them would result in an unfair representation of the disease's impact. EG I 'often' feel... / It's made it 'hard'
....................................................
I occasionally am concerned that symptoms of an exacerbation are pointing to a deterioration for the future
I do not regard my day to day activities as impacted, though I do have a routine now re meds, excercise and lung clearance that I must apply and takes up an hour a day that I would not previouslly have spent
Unpredicted spells of a week or more where I have a couple of hours of tiredness in a day can reduce my appetite to get things done I would normally elect to do (but do not prevent me doing things I have to do)
I understand of course that it is difficult to frame a survey that gives the right nuances for all sufferers, but I do think that stuff like this is in danger of painting an overly negative view of the impact of the disease to newly diagnosed patients.
Sorry - just realised this survey covers lung diseases generically. I can't see what objective of such a survey can serve, other than as some kind of "look how bad lung diseases are - give us more funding" tool.
Showing this thread to the people who decide if we need financial support might help! The main question asked by assessors seems to be "How far can you walk?". Most of us can walk a bit but it's not the only thing affected by our lung conditions is it? Even though we walk varying distances we all seem to be left exhausted afterwards.
I'm sure this survey will be of use. xx
Hi Santisuk. I asked Ben to post this - sorry if I phrased it all too negatively! A survey like this is really helpful to start understanding what the big issues are for people with lung conditions. The numbers are interesting, but the conversation it starts is just as important, if not more so! The polls on here can only have 8 answers so I know we can't cover everything. That's why I read through all of the feedback people write about the things that affect them.
The next step is that I'm going to ask our Patient Think Tank to look at the results of the poll and the answers people have given. Then we can discuss what are the issues that people most need help with. By understanding that, we can plan our work over the next few years.
It has affected my appetite and what I can eat
Diagnosed with what though roey? Bronchiectasis patients should not be told they are going to suffer in anything like the same way that is represented here and generally on this forum. Some might and some might be halfway there, but many live quite acceptable lives in spite of their chronic disease (I'm only going by the responses I see on another forum that deals more specifically with bronchiectasis patients).
Of course the broader issue that I suspect is raised by my observations is about whether the purpose of this forum is to cater for COPD and similar patients or those with a broader range of lung complaints.
I respect your response though and can understand that patients with significantly adverse symptoms of any lung disease would see that it could be used to some benefit. It is of course natural too that those with adverse impacts are more likely to look at, and comment in, forums such as these. We should IMO all be conscious of the effect that may have on newbies also. I'm not suggesting we should be portraying false hope, but there needs to be some balance going the other way
That wasn't aimed at you, when new people come onto here they get the comments about how you can live a long and happy life, how people don't die from lung disease these days, how it won't progress etc etc. I know people are trying to calm them down but then them same people read a few posts on here and the truth is very different.
I completely agree with what you say but 99% of the posts are pretty scary to read. Maybe those that don't progress much just don't post but this site pretty much shows relentless progression
Hello santisuk .
That's a good observation to make. I think many people (myself included) post when things are especially trying. I don't have Bronchiectasis so I cannot comment on that specific lung disease. I can only give insight to my personal experience with my lung disease, knowing full well that someone else with the exact same condition as I have, will very likely have a completely different take, experience and progression.
When I was a new person here, I found that the posts , although sometimes a bit worrying, were also filled with hope and with encouragement. I still find that today. I think it's important for people to be able to share their darkest days in forums like this, because for many, this is the only place people understand totally. There's no fear of vilification or ridicule.
I don't think it really matters what kind of condition we have, this forum is support for everyone with a pulmonary condition, whether they have severe symptoms or not. Good days and bad days.
I hope I'm not speaking out of turn and many apologies if I sound daft.
Many warm wishes,
Cas xx 🍀
Have Asthma and bronchiectasis, along with several other illnesses. Chest infections regularly and had to give up work as a combination of other things. Struggle with gastric reflux and panic attacks. Things i did before a lot harder and scarier now. Asthma from birth, bronchiectasis spread. very down and depression sets in
Hi Ben know how you feel I’ve not been on holiday for donkeys years,, yes it can be hard carrying out day to day acitives / chores but there is always a way around it I find ways if it’s too much I rest by resting I’d read, do a puzzle takes my mind off it then I start again etc, I’v also got incontinence, I wear pads day and night it helps, when I go out I wear those incontintency pants works for me but what I feel that tires me out the most is carrying the oxygen cylinder, the trolly thing is useless for me as I’m small in size my right hand don’t function properly I use a walking stick my left hand, so that hinders me, I just give myself a goal for the day it may take me all day but it does feel great when I complete my goal
I need help
I suffer with fatigue. If I try to make a cake i am exhausted and as for housework, forget it I am no longer capable. Pat M
Feeling extreamly tired some days
I have sense of being useless/a lesser human being, especially having my condition ignored by my GPS - they make me feel like I am a malingerer.
I take steroids 8 stone to 11 3 years skin like paper . I don't know me!
I can't visit any friends or family that don't have a downstairs toilet! I can't get upstairs anymore.
Hi Ben, thanks for taking the trouble of offering this poll to me.
One more thing that occurs to me is that I feel enormous grief at the loss of quality and, possibly, quantity of life. I feel that I can never fulfil my potential as a woman, mother, health care worker, dancer, etc.....
With kind regards
swimmer
I find it hard walking after 10 minutes or so, I have to pace myself. I gasp for air. I get so fed up with it. But I know my 2 walks a day benefit me. So I keep it up. Walking through the breathlessness.
