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COPD symptoms

JulyAugust profile image

Hello everyone, I’m feeling really down tonight. I get out of breath when getting dressed or having a bath and even walking from my house to my car (about five metres). My husband and son don’t seem to realise how difficult it is for me and my son even thinks I exaggerate my ‘hyperventilating’ (his words). My symptoms don’t seem to accord with the norm..I’ve never been hospitalised nor have oxygen therapy. I work from home as a paralegal which can be very stressful especially if we have a litigation matter that is my responsibility and any stress makes my breathing worse. I’m on Trelegy Ellipta and Salbutamol inhaler. I actually feel exhausted a lot of the time and try to hide my condition from everyone and that just adds to my feelings of extreme loneliness. I try and be strong but the fact is I get anxiety about leaving my house.

83 Replies
Damon1864 profile image
Damon1864Volunteer

Please ask your GP about medication for your anxiety it willale a difference As for your husband and son not understanding so many of us know how that feels. Give them time I'm sure they will come around, get some information leaflets from this forum that they can read to help them understand

And please don't ever feel lonely we are always here for you, and by the way welcome to the site sorry I didn't say at the start. You have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

JulyAugust profile image
JulyAugust in reply to Damon1864

Hello Bernadette and Jack, I’m overwhelmed by the responses to my post and really appreciate everyone’s replies, support and kindness. My husband understands to an extent but my son will never understand…apparently he has googled COPD and has decided it is no big deal. When he came to visit one day and I was particularly out of breath he said “what’s all this drama about”. It really hurt my feelings and since then I’ve never let him see me breathless nor mentioned my condition.

Thank you again for your kindness x

Damon1864 profile image
Damon1864Volunteer in reply to JulyAugust

That is really shocking the worst thing he do was goole it. He needs to understand that you need all the help and support you can get. Please get some leaftlets from the forum they are free and full of information, you should be able to do it if you scroll down to the bottom of the page. I do hope this helps you, you and your hus beans have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

Xxx

Hello Jan. 🙋‍♀️

Oh gosh. If your lungs were working at 39% in 2015 by now they have definitely declined. May I ask why you have not been assessed for oxygen therapy? Do you see your lung consultant regularly, because you should be. No wonder you are hyperventilating. I'm afraid you need to see a lung consultant and check where you stand now. At 39% seven years ago, I think this is quite serious and your family are either totally ignorant or because you just carry on with day to day life and haven't been hospitalised or fallen flat on your face , they take it for granted, you are fine. But you are struggling terribly and you are expected to (literally) suck it up and carry on. I'm sorry to be blunt. 😔 I had a similar experience with my family. And I'm afraid I had to change my attitude before they changed their's. "Mum is fine" No, actually she's not. 🙄This is an uncomfortable process but necessary. To put it plainly, if your people just sit and watch you struggle, they are not your people.

I think the next step would be to make sure they ( and you of course) get the full facts of your medical condition and subsequent treatment by taking them with you to speak with your consultant.

You need not be isolated. You deserve to live a full and happy life even if you are put on oxygen therapy. You ARE NOT ALONE. All of us here know exactly what you are going through. Please remember you have a supportive group here and we have very broad shoulders. We are here for you. Do not suffer in silence.

Life is too short.

Much love.

Caspiana xx ❤️🐕

JulyAugust profile image
JulyAugust in reply to Caspiana

Hello Caspiana, thank you very much for your reply. I have never seen a lung consultant. On a telephone consultation with my GP about four months ago I mentioned that an acquaintance said they knew someone who has COPD and was under the care of a pulmonologist and I asked why I’ve never been referred to a pulmonologist and he replied “that’s for someone who is REALLY ill”. I’m not sure how ill I’m meant to be but recently I had another telephone consultation with him and asked if I can be referred for pulmonary rehabilitation and he said “well, there is a long waiting list”. I was in tears at that so-called consultation with my GP and I get the impression that as I have never been hospitalised my condition is not considered to be serious. Every now and then I get a text for a review of my condition which involves stating my symptoms on a scale of 1 to 5, mine almost always being the worst (except for sleep, phlegm and cough) but nothing further usually happens as a result of completing that ‘review’. However as a result of that recent tearful telephone consultation I had my medication changed from Braltus Tiotropium and Duoresp to Trelegy Ellipta and I think it has helped very slightly. I never really cough at all and never have any phlegm or sputum whatsoever that I read others have. Sometimes my chest feels like cobwebs are building up - once in August 2021 I woke up in the middle of the night and literally couldn’t breath at all…cobwebs had taken over my lungs and I opened our bedroom window wide and tried to inhale the cool night air and gradually I could breathe again. That was the only time I felt like asking my husband to call an ambulance and fortunately it hasn’t happened again. I’ve never had a chest x-ray either which I see other COPD sufferers have had. Sorry for rambling on Caspiana. Do you think oxygen therapy would help? I read somewhere it’s not a good idea and really only used at the end. Take care dear x

Caspiana profile image
Caspiana in reply to JulyAugust

I am aghast. You MUST see a lung specialist Jan. There are many lung conditions and you need to know precisely what you have going on. My cough is non productive. I do not have COPD but I do have a lung disease called Bronchiolitis Obliterans a manifestation of having Rhuematoid arthritis for decades. I had a single lung transplant in 2019. Without it I would not be here today. To be on oxygen therapy you must undergo an evaluation. I was on oxygen for a few years before my transplant. Hypoxemia (low oxygen in your blood) can cause hypoxia (low oxygen in your tissues) when your blood doesn't carry enough oxygen to your tissues to meet your body's needs. Although not everyone is suitable for oxygen therapy. Many of our members have been on oxygen therapy for a long time. I don't see any of them leaving us very soon. So, no it doesn't mean because one is on oxygen they are about to keel over.

I don't live in the U.K. In Japan we don't have a backlog of people waiting to see doctors, so I cannot begin to imagine how difficult it is to see a specialist. But I urge you and encourage you to advocate for an appointment. Do not ever worry about rambling. We are here for you. *HUGS*

Cas xx 🌱🌻🌿🌷🍃🌸

JulyAugust profile image
JulyAugust in reply to Caspiana

Hi Cas, thank you for your further reply. I Googled your condition and it seems to be more serious than COPD. I’m glad you got your lung transplant without which (as you say) you would very likely not be here so I’m very happy to e-meet you. I wonder if you would have got your lung transplant in England? I’m sceptical that you would have done. Do you pay to have healthcare in Japan? I feel more than a little disgruntled with my healthcare…I’ve been paying my compulsory national insurance for over forty years and now I need healthcare I’m deprived of it. Your English is amazing. I’m currently learning Spanish, which I’m really enjoying but it is a slow process!

Re my oxygen level, it’s always normal according to oximeter…as I mentioned my COPD doesn’t seem to conform to the norm. I have days when my breathing is not too bad…today and yesterday I’ve been almost out of breath all day even at rest. I can honestly say the only time I feel totally at peace with my breathing is when I’m in bed.

Due to your advice I am contacting my GP and insisting on a referral to a pulmonologist. I think I will also see a consultant privately…I could be dead by the time I actually get an appointment to see someone via the NHS!

It’s lovely weather here in the south of England and I sat in my garden today enjoying the sunshine.

Janxx

Caspiana profile image
Caspiana in reply to JulyAugust

Good on you Jan. Yes! Do it. You cannot leave your healthcare up to them anymore. And yes, if you waited for an appointment I am afraid it will take too much time. I had my transplant in Japan and my mother is British, she lives in the South by the sea 😄, most of my education was in English so I cannot take credit for my English. 😂 I was lucky to have a good education and my mum who made sure we read books, lots of them. Are your oxygen levels normal when you are walking, moving around? I am guessing when you see a consultant they will want a six minute walk test to see if your O2 drops. I don't think you should assume you have COPD until you are properly assessed, which it seems you have not been. There is a myriad of potential other conditions you could have.

In Japan people will pay about 30% of their medical bill the rest is subsidised by the government. But I pay nothing because I have had a transplant and all transplant patients get free health care.

So glad you are having good weather. We are going on a short holiday in a few days and I am hoping the weather will hold. Please do keep us updated. I'd like to follow your story.

Many best wishes.

Cas xx ☀️🐕

I can sympathise with the breathlessness and anxiety .

First step , make an appointment with your GP …..explain your symptoms , ask for help. I had to try many inhalers before I found a combination that eased my breathlessness. I have problems some inhalers , and if I take too much Ventolin …..but others are fine with it .

Medication for anxiety , I was prescribed some to help initially .

I also reread Claire Weekes book on self help for your nerves ….published a long time ago , but she advises letting the panic pass without feeding it with more panic .

There are also tips on YouTube on pursed lip breathing to help anxiety and breathlessness….gentle gentle breath in through nose …..gentle gentle breathe out through pursed lip mouth for a slightly longer time …repeat a few times.

Also Patrick Mc Keown on gentle , gentle nose breathing , and Jud Brewer videos.

When you are working at home , stop from time to time to check you are still nose breathing , still with relaxed diaphragm and shoulders .

I found meditation helped calm me ..first with a teacher then with an app..I use Calm or Jon Kabat Zinn videos often .

Gentle slow music to relax.

It can be difficult for others to understand breathlessness and anxiety ….the circle that is hard to break ….but concentrate on loving yourself ( sounds trite and ‘ new age ‘ , sorry for that …..because you are worth it ) .

There is help .

Again , contact your GP…..write down your worries if it’s easier.

Also ring the ALUK helpline on 0300 222 5800 ….open during office hours for UK residents.

Many people here can understand , keep in touch .

Sending best wishes .

JulyAugust profile image
JulyAugust in reply to knitter

Hello Knitter…I will definitely ask my GP about medication for anxiety. I do pursed lip breathing and that does help if extremely out of breath. I will also check out your recommendations for Calm/Jon Kabat Zim videos. I watch some ASMR videos on Youtube which I find very relaxing (especially some of Whispering Red) and also ocean waves sleep videos. Thank you so much for taking time to respond. Jan

Hi I was just like you !!Same meds, same family issues.

I was getting anxious going anywhere and sometimes breathless from car to house - very small distances and felt vey low

I went to GP in Dec 2021 & started sertraline. GP advised I would have to stay on it for at least a year- I agreed as I was so low I would do anything.

Sertraline is for anxiety & depression.

The anxiety improved first and it REALLY improved my breathing, over about 3 months depression improved too and I started doing more.

Family are a real issue for me too- they cant see/feel what COPD is like - I am now going to apply for a disabled badge- not just to help when Im out , but hopefully (if granted) show my family that I have a difficult disability, that I try to hide, but sometimes need help

Good luck X

JulyAugust profile image
JulyAugust in reply to KC2222

Hello KC222, thank you for replying and for the recommendation of Sertraline…do you have any side effects to that medication?

Yes it’s hard having to hide our symptoms from friends and family. My husband is generally supportive thankfully, but I think no one really understands except fellow sufferers.

I applied for a disabled badge and was turned down as some occupational therapist who has never met me concluded that I “still have access to services” (whatever that means). I just applied again and in my recent consultation with my GP he implied he would support my application if they write to him. Let me know how you get on and I will let you know the outcome of my second attempt.

Best wishes, Jan

KC2222 profile image
KC2222 in reply to JulyAugust

Hi Jan, I actually got diarrhoea for about a month or so (not urgent just loose ) , I kept on it because I was at my wits end and was willing to put up with it- it did stop though, and is a common side affect apparently.Good luck in whatever option you choose X

KC2222 profile image
KC2222 in reply to JulyAugust

Hi Jan, cant believe it. Got an email yesterday asking me to reply yes to a load of statements about my application being honest/accurate etc, then another email saying could not process as no payment received, followed link paid £10 then another email - I will get badge in 5-10days. As these badges are approved by local councils I guess it may be a postcode lottery as to who gets one or not. Message me if you want any more details- and goods luck with your application I truly hope you get it this time.

JulyAugust profile image
JulyAugust in reply to KC2222

Hi KC2222, I’m very happy that you are getting your badge. It will make life a lot easier for you. When I go to Sainsburys (which is rare as I get Ocado delivery every week), it’s so frustrating seeing all those empty disabled bays and having to park some distance from the store. I only buy a small bag of stuff as that’s all I can manage to carry. If I get turned down for this second application I’m going to appeal.

I agree it probably is a postcode lottery and entirely dependent on your local council.

KC2222 profile image
KC2222 in reply to JulyAugust

Thanks JanEverything you say sounds like me! When the form asked how far from a to b that I could walk I did say I rarely walked anywhere apart from to and from the car. I had to walk up my road to five them a time which they probably check on route planner.im sure with you go help you will succeed xxx

Hi, Caspiana has said it all.Please don’t feel alone, we know exactly how you feel and many of us have gone through the experience of not being understood.

Copd is very frightening and it’s difficult to find the right medicine to make us comfortable. We are all different though the ‘same’ in a lot of ways. Speak to your GP,

Anxiety makes us worse and i am always trying to lessen my anxiety.

I hope the best for you. Always someone on here to listen, it’s good to air your feelings.

Take care.

JulyAugust profile image
JulyAugust in reply to Collie4

Hi Collie4, I really appreciate your reply…I agree COPD is frightening and sometimes lonely. I sometimes reason with myself that it’s better to have this than having ALS, Parkinson’s or Alzheimer’s - those would definitely be worse…what do you think?

You also take care dear

Yeah i can relate to what your saying i feel knackered most of the time but i try not to let it get me downI have a blue and green inhaler they help a bit go for short walks etc

Just do your best like the penguins lol

Thank you for your words of support Eastend555…yes I do feel a bit like a penguin these days in terms of walking speed 😉

Hi JulyAugust and welcome to the site. I would do as suggested by everybody on here and go back to your gp. I would also ask about having your heart checked, breathlessness isnt always just your lungs, you could discuss this with your consultant as well. It must be so difficult if your family dont understand, would it help if you sat them down and discussed how this has affected your life and how you really feel. There are plenty on here with copd who can answer your questions, this site has been a godsend for me, when I was first diagnosed with bronchiectsis I knew nothing about it and the gp was a waste of time, in fact my consultant was no better. I learned more on here than anywhere else. But I did my research and read everything I could as the more you learn the better you deal with it, never give up x

JulyAugust profile image
JulyAugust in reply to Izb1

Hi izb1, thanks for your welcoming words…yes I have little faith in the medical profession myself. I do think my heart is fine though. My blood pressure is always normal. I’m so glad I joined this forum as I think I’m going to benefit from all the love and knowledge from all you lovely intelligent people…I’ve never heard of bronchiectsus but will google it. Night night

try having a shower in stead of a bath you can buy chairs to sit on while having a shower have the bath taken out & have full length shower in i had my shower chair from argos they do help xx

Hi ghousrider, thank you for reply. I do have a shower too but I find a soak in the bath helps all my aching muscles. x

Hi to all glad you can get out of bath i have a tecky in kneck have panic attacks if i can t get my breathe i live in a low rise flat been modififed for me cheers

Hello July August, keep up the good work, right now I could do with a paralegal. Its very hard to cope with your feelings and also those of the family and others which can at times cause severe anxiety. However if you find just walking to the car ,or batheing ect is bad try asking your GP for a breathing assessment this might help you and your family to know how good or bad it is in medical terms. I find the breathing is worse if you are putting more effort into things like maybe bending to pick up things or carrying things to the car say ? I understand what you are saying I find it very hard to explain what living with constant pain is like , plus the breathing problems. But this site is very good as we all have similar problems and understand .

Hi. KatieOxo60, yes I would really like to have another spirometry test as I haven’t had one for years. I agree that bending down or carrying things to the car makes breathing worse. I now keep the bare minimum in my handbag when I go out as even carrying that seems to make matters worse sometimes. It’s amazing how the human body can adjust and cope with so many symptoms.

Your right there JulyAugust, It amazes me how our bodies cope . But by coping others think there is nothing bad wrong when COPD & other lung conditions are life changing illness along with side effects from drugs and inhalers for long term use. I like you have not had a spirometer test in yonks just annual reveiw but feel chronic illnesses should be rechecked if only every few years. I do have an annual reveiw by my surgery but no spirometry or scans ect of my lungs .Many drugs given for varied things can worsen the breathing. As asked of me the other day how do we cope with all the health issues along with other difficulties in our life styles. Enjoy your day

Hi katieoxo, the NHS is such a disappointment isn’t it. I just had a ‘review’. It was one of those text reviews…the response was that my “condition is stable”…couldn’t get my head round that since I have increasing difficulties. I have my husband to look after me but if I was on my own I’d truly be panic stricken. The ‘review’ didn’t even ask if I had family or whether I might need assistance. Just shambolic really.

It’s interesting you say various drugs can worsen the breathing. I actually wonder if I stop taking my COPD prescription whether my condition will stay the same or deteriorate. My current medication that I have been on for couple of months has steroids and my lovely feminine voice has become hoarse and people keep asking me if I have a sore throat. Many years ago I worked for the NHS and the drug companies are in competition to supply the consultants etc…they would take them to expensive restaurants and send gifts…just remembering that makes me wonder if we’re taking this stuff as beneficial to us or just to keep the drug companies rich.

To be fair, not all consultants would succumb to being (essentially) bribed by the drug companies.

Take care dear and hope we have more exchanges x

Good morning Jen working from home must be very stressful as home is usually the place we feel safe and relaxed and people that have never experienced being short of breath won't understand . I've worked as a therapeutic horticultralist and being outside in nature as definitely helped but know I can't even chase my grandson but bake and garden with him .I tell all my friends and family and still feel isolated even thou my son lives with me we all been through a 2year period of high alert with the pandemic and this can't of helped anybody stay strong spend so time each day in green space the people are very supportive on here if found it usefull and easy to communicate and reach out

👍

JulyAugust profile image
JulyAugust in reply to Lindon

Hello Lindon - thank you for replying. Being a therapeutic horticulturist must be very rewarding…no office politics I would imagine! I love my garden but have gardeners now. I can still dead head the roses and water the garden and I managed to plant a few small plants the other week (which left me puffing like mad). I expect your grandson loves baking with you so it doesn’t matter that you can’t chase him around the garden. Jan

Oh it's so hard when people don't understand. When my cough is bad people are kind but with breathlessness I've had comments such as "well surely you just breathe it happens automatically -don't think about it" This site is so good, we all understand in our own way how it feels trying to deal with the breathlessness, stress and panic circle. Take care xx

JulyAugust profile image
JulyAugust in reply to Nula2

Hi Nula2, that comment made to you was so tactless and thoughtless. I’ve come to the conclusion it’s human nature when people are fit and healthy to be unsympathetic to those with ailments. COPD is an invisible disability really and that’s why they can’t conceive of not being able to breathe. I hope your cough improves. x

Nula2 profile image
Nula2 in reply to JulyAugust

Thank you, take care of yourself xx

Poor you... Breathing issues are a nightmare. Sorry you're struggling. The hotter weather makes things harder I find, and the cold. Sorry your family can't be more supportive. :(

JulyAugust profile image
JulyAugust in reply to BennyC

Hi Benny, thanks for taking the time to reply. To be fair my husband is generally supportive..he does his best to look after me and does a lot more in terms of chores etc than he used to. It’s my son who is totally unsympathetic and that has come as a shock to me. Fortunately he only visits once a month which is when I work hard to act ‘normal’.

I don’t mind the hotter weather…however I try to avoid going out in the cold if possible.

Jan

BennyC profile image
BennyC in reply to JulyAugust

Well I assume your son is old enough to know better... Breathing issues are the worst.. Life changing! Keep going sunshine!

JulyAugust profile image
JulyAugust in reply to BennyC

Yes my son is 36…we used to be very close. I never wanted him to look after me in my old age but I expected kindness and thoughtfulness, but it apparently is not to be. It took me about three months to recover from that realisation but fortunately I have quite a nice life despite not being able to breathe!

Hope you are doing ok Benny 😉

Your post really helps me understand my hubby more who has COPD and whose symptoms sound just like yours. He’s too nice to complain and a lot of people really do not understand how difficult things are for him. I’ve realised too how anxiety and stress make it worse for him. As a former paralegal myself I understand too how your condition is effected by work demands, usually all the same demands and responsibilities of a Solicitor without the high salary, perks and prestige! Is there any way you could take time out to focus on your health and qualifying? By ILEX route? I really feel for you and hope things get better soon. Loads of good advice and support on the site. Putting clients (and employers) first is a helluva stress on most legal practitioners who find it hard to put their own self care first.I know many whose health has deteriorated including mine.Hang on in there, You are most certainly not alone and you deserve good treatment, care and understanding. Show your husband and son this post? They will be so upset if you have a crisis..or worse x

JulyAugust profile image
JulyAugust in reply to battison

Hi Battison, yes you are so right…my boss gives me all her lawyer work to do and then puts down the time as if she did it and then charges the client £550 per hour for work done by me! I hate being a party to such dishonesty, sometimes I comment to her about it but it falls on deaf ears. No I definitely don’t want to do ILEX…I did the first year of that years ago and realised I wouldn’t get paid much more than my existing salary and it was two evenings a week of attending evening classes. Actually I really want to stop doing legal work. I’ve just seen a job as a proof reader I’m going to apply for. Thanks for replying and best wishes to you and your hubby. x

battison profile image
battison in reply to JulyAugust

That is always the way! I worked in social welfare law, legal aid, so there was more integrity about charging but unbelievable stress. I didn’t even realise how much stress until I got out of it after cancer. It’s taken me years to switch off and relax! I still dream a case is in court and I haven’t done the preparation! Really hope you get the new job! Your legal skills will make you a great proof reader. You can begin to really take care of you and your health. Good luck and keep us posted…

JulyAugust profile image
JulyAugust in reply to battison

Hi Battison, I do company commercial and employment law. I also have dreams about what I need to do at work and sometimes can’t sleep due to the worry. My boss has sometimes ranted at me “we’re going to lose this case because of you”. Fortunately we never have. Sometimes I resign but she persuades me to stay. I’ll let you know if I get the proof reading job. x

battison profile image
battison in reply to JulyAugust

Oh how awful! So much pressure and worry! Tho of course it’s great when we win. I specialised in housing and homelessness. Great feeling to stop an eviction of win judicial review to get someone homeless a roof over their head. But the paperwork and strain!! Get out if you can!

JulyAugust profile image
JulyAugust in reply to battison

That must have been an interesting aspect of law…years ago I did criminal law and that was really interesting. I’m glad you recovered from cancer and hope it never returns. x

battison profile image
battison in reply to JulyAugust

I started off in criminal law. That’s how I started smoking! Everyone and their dog smoked in those days, robing rooms thick with fug!

HiI’ve just joined this group only just diagnosed but felt just like you

And my husband certainly doesn’t understand!!!!!!!eventually I went to my gpas I was at the end of my tether I kept saying I’m Not fat and I’m fit I walk 3/4 miles daily

Had a diagnosis of very mild copd so I’m frantically looking for things to keep the condition mild!!!! Take serious care of yourself and SHARE

JulyAugust profile image
JulyAugust in reply to Looddog

Hi Looddog, you are so lucky to be ‘mild’ COPD. I don’t know if you smoke but you should give up immediately and don’t think about vaping instead. I vaped for three months after I stopped smoking and I think it’s more harmful than smoking. I hope you stay healthy x

Hi JulyAugust,

I really feel for you and would definitely recommend that you ask for a referral to a respiratory consultant to see where you are with fev1. I am assuming that you have been to pulmonary rehab course if you exercise daily. I am 2 years older than you and was also diagnosed in 2015. My fev1 on diagnosis was 49%. I recently had another spirometry test and am now at 30%. I did stop smoking in 2015 but started using ecigs which I managed to kick 3 years ago. I can honestly say the ecig seemed to make my breathlessness much worse and I noticed a real improvement when i stopped. I can manage OK at 30, everything just takes a bit longer. I do know that any anxiety can make me very breathless but it's not something I'm really bothered with. Please speak to your gp about the anxiety and for a referral to a consultant to see what the situation is with your lungs. My very best wishes to you.

JulyAugust profile image
JulyAugust in reply to ABBA2

Thank you ABBA2, no I’ve never been to pulmonary rehabilitation but I’ve asked my GP to refer me although he advised me there is a waiting list. I do exercise as things get worse if I don’t. I agree vaping and e-cigs are just as bad if not worse than smoking. I ‘m going to try and get a spirometry test with the practice nurse. Take care, Jan

battison profile image
battison in reply to JulyAugust

There is indeed a waiting list! My hubby finally has a (telephone) ‘triage’ appt with pulmonogist (can’t spell it!) next month - after 2.5 years of waiting as he’s got markedly worse. Only happened after I contacted GP on his behalf. I have to do everything for him so was at my wit’s end. He is the (lovely) type of person who pretends all is well.. sometimes we need our nearest and dearest to speak up for us when we can’t. That is why you need, and must make them see (by showing son this thread?) you need their support and understanding.

JulyAugust profile image
JulyAugust in reply to battison

Dear Battison, your husband must be bad if you have to do everything for him. I cook and empty dishwasher etc and even vacuum. Everything is done in a state of breathlessness to a greater or lesser degree depending on a bad or not so bad breathing day. My husband does do stuff too and if I’m having a bad breathing day he does take over and help. When I vacuum I literally do it in spurts…vacuum for five minutes and then sit and recover…rinse and repeat. You are lucky your husband is such a nice man as it would not be a pleasure to help someone who is moody and snappy. Do you know what your hubby’s lung capacity is? Take care dear x

battison profile image
battison in reply to JulyAugust

Doesn’t help that he’s partially sighted too! We don’t know his lung capacity. Gp’s are not much help. Like you he gets reviews - but none in last 2 years of lockdown. Recently he went onto Trimbow inhaler which has helped a bit, he’s started doing a bit more. Last few weeks he’s taken the bins out! Like you - in spurts, breathless, then stops to recover…. X

ABBA2 profile image
ABBA2 in reply to JulyAugust

Hi Jan, I just wanted to say that although my lung function has declined it doesn't seem to have affected my oxygen levels. In fact after getting prescribed a steroid inhaler by my consultant they actually improved. I am on Spiolto Respimat, ventolin, and low dose clenil (steroid). I am not generally breathless unless exerting myself on hills or walking on the flat for longer periods. I was smiling when you mentioned clearing out your handbag when going out as that is me when I go out!! I have seen a lovely consultant to investigate getting valves and although not suitable for this he agreed to keep me on his books for regular checks. It might even be worth your while to pay for the first consultation and hopefully you would be moved to his/her nhs list for the tests that would let you know where you are with this disease. Good luck.

JulyAugust profile image
JulyAugust in reply to ABBA2

Hi ABBA2, if you are 30% and not generally breathless my level must be a lot lower than yours…that’s really scary to me - I would like to be around a few more years yet! I’m almost always constantly out of breath except when sitting and in bed. However my oxygen level and blood pressure is always normal. If your consultant is in or around London please give me his or her name as I’m willing to pay for private consultation. Take care (and keep that handbag light😉).

Charlie_G profile image
Charlie_G in reply to JulyAugust

If it’s any reassurance, breathlessness doesn’t necessarily reflect lung function. There are people with objectively very low lung function (fev1 of 40% or below) who get about with few issues and relatively limited breathlessness, and then there are some with an fev1 in the 60s who really struggle. On top of which, spirometry (lung function testing) is only ever a rough guide on the day: it’s the best test we’ve got but far from perfect, and something that takes time to become proficient at undertaking consistently. Spirometry is best suited to monitoring stability over time rather than a spot check of how someone’s faring once in a blue moon.

battison profile image
battison in reply to Charlie_G

Thanks Charlie that is very reassuring time and I hope it is to July/August too x

JulyAugust profile image
JulyAugust in reply to Charlie_G

That’s interesting Charlie, it’s amazing that someone with fev1 in 60s struggles. Thanks for the helpful reply.

ABBA2 profile image
ABBA2 in reply to JulyAugust

Hi again apologies if I've alarmed you but I just want to say before I went to PR I was breathless walking to the loo and going out anywhere was an ordeal. I did PR 3.5 years agoI have kept doing the exercises we were shown 5/6 times a week and think this really does improve my quality of life immensely. PR exercises seem to be about increasing muscle strength as I can now feel 3 muscles in my arm that certainly weren't there before!! My consultant is based in Scotland but if you start a new thread asking for a name in London I'm sure you'll get plenty of recommendations. Very best wishes.

JulyAugust profile image
JulyAugust in reply to ABBA2

Thank you, your experience has made me feel very optimistic about pulmonary rehabilitation.

Hello Jan

My wife is in a very similar position. Extreme SOB after just a few metres. She has no cough or phlegm and has never had a bad exacerbation requiring hospitalisation. I think it means there are some people who can’t see her struggle, as she puts on a brave face when they meet her. She started to get increasingly anxious about going out in case she became stranded. A wheelchair has given her confidence to get out and about, although that could be tricky if there is resistance from your family.

My wife eventually got oxygen, which also gives her added confidence when we are out.

I would endorse, completely, what Caspiana has said. Insist on seeing a consultant and take the family with you.

Wishing you all the best

Hello hillclimber, I’m glad your wife is more confident to go out with a wheelchair. I really don’t want to get one until I absolutely have no choice. I have decided to insist my GP refers me to a consultant. I prefer to go to hospital appointments on my own although my husband would be very willing to accompany me if I asked him. Do you know what your wife’s lung capacity is (some people seem to call it fev1)? Thank you for your kindness. Jan

Hi Jan. Her Fev1 is currently 24%.

Just saying hi and welcome Jan, I have nothing to add to all the helpful replies you have had. There will always be support here whenever you need it. Best wishes Carole x

Thank you Carole, take care x

Hi and welcome to this friendly, funny and informative forum. As you've seen there are lots of supportive people here. I concur with everything that's been said. I was hospitalised with respiratory failure (copd and asthma) and the consultant told my hysband if he tried to run upstairs whilst breathing through a straw he'd have an inklinking of what our lives are like. You could tell your son that!

Dear Karen, I’ll find an opportunity to tell my son that when he visits. Best wishes and thank you for taking the time to reply. x

You're welcome. Hopefully he'll be a little more understanding. Unless of course he's being dismissive cuz he's scared.

Hi Jan. Welcome to the forum. It looks as though you have had some very helpful responses from the members here. My only suggestion, if it hasn't already been said, is would it be helpful to go down the private consultation? You would be seen quickly but could incur more costs, like X-rays and CT scan. Wishing you all the best xxx

JulyAugust profile image
JulyAugust in reply to HollyBoyd

Dear Holly, yes I’ve decided to see someone privately…I really begrudge that in view of paying towards the NHS since I left school but as the advert goes “I’m worth it”. 😉

HollyBoyd profile image
HollyBoyd in reply to JulyAugust

I'm sure it will be money well spent. Good luck with the consultation xxx

Hi and welcome to this forum it is hard when nobody understands how you are feeling my family think I panic when I can’t breathe

Hi shortlungs, yes that feeling of panic is the worst. I’m so grateful I’m not living alone, that would be even worse.

First of all huge hugs-many of us have family members who appear unhelpful or indifferent to the difficulties we face on a daily basis.Each family dynamic is different -my families response was fear based ,as long as they could say it was"all in my mind" even post resus itation they didn't have to deal with their fear.Please do seek help for how you are feeling -you a worthwhile unique and special human being.

Your dodgy lung buddies collectively have a wealth of knowledge ,hints and advice Never think you are alone cos you aren't.

Please do reach out to your medical team.

I wish you well .

Hi Cloudancer, thank you for replying. I’m not sure it’s fear…I think they just think we are somehow attention seeking or being melodramatic, at least that’s the impression I get with my son. Anyway I honestly don’t lose sleep over his way of thinking. I understand he has his own life to lead. I am glad you recovered from your serious exacerbation…must have been very scary. I’m very glad I’ve got some really supportive people on this website and I’m hugely grateful to know I’m not alone. x

Hi, and welcome to the site. Some families are the pits. I noticed you were thinking of doing proof reading. Check out Goodreads which has message threads for authors looking for editors and proof readers. You might be able to pick up some work there.

JulyAugust profile image
JulyAugust in reply to Ergendl

Thank you Ergendl…is your name of German origin? I will check out Goodreads. Have a lovely evening.

Ergendl profile image
Ergendl in reply to JulyAugust

Thanks for your comment. It's a corruption of the business name I publish under, to make sure the comments I make here don't turn up with the business listings on Google searches. There is a lot of symbolism in the different syllables, and the second part of the name is also a Cornish surname.

JulyAugust profile image
JulyAugust in reply to Ergendl

Oh I see, yes it’s a good idea to keep anonymous if possible . I have a really unusual surname (my married name) and if I used it on the internet everyone would know it’s me.

Hi JulyAugust ask for a walk test to see if the dr can recommend anything else to help you. Often as in my case my oxygen was dipping unbeknown to me (I think we just get on with the struggles) and it wasn’t picked up by my consultant until I pushed for a walk test. To be honest the consultant was alarmed and abandoned the rest of the walk test as the oxygen dropped to mid 60%. She explained my symptoms didn’t necessary show obvious signs of my oxygen dipping and it may have been an idea to have checked via the walking test earlier. You are the best judge of what your body can do and it’s limitations… share those with your consultant. Hope you get some relief soon x

Thank you dear…I most definitely will ask for a walk test and will let you know how I get on. Take care x

Hi, a lot of my family don’t realise how debilitating lung issues are. When I used to go to our rehab maintenance exercise classes, our physio lead would often ask the physio students who would attend as part of their course to do a 5 minute exercise with a straw in their mouth to breathe in AND out of to give them a sense of what some of us felt like when moving/exercising, most of them lasted no longer than a minute, try asking yr son to do the same and then to report back on his theory of ‘hyperventilating’! He WILL understand one day but the young and healthy, indeed oft’ the older and healthy have no idea until they get covid or break a rib. Just have a straw ready for his next thoughtless quip! Good luck n hang on in there x

Aww you’re lovely…such a nice response to my woes. I thought my son and I were so close but in the last four years he’s got rather negative towards me despite making so many sacrifices for him to have private education, help to get on property ladder etc. but then he is a millennial and they want it all. I will most definitely get him to try the straw test at some point - let’s see how he gets on with that one!

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