I got Pneumonia last year and got diagnosed with severe COPD and Pneumonia diagnosed via X-ray and Spirometry test I have a lung age of 83yrs and the only spirometry they have done since was unsuccessful but came out at 56% I had one successful blow.
This was a year ago I have been admitted a couple of times since with recurring pneumonia and have had 5 v bad flare ups this year alone resulting in me being in 6 x 5mg steroids a day with accompanying antibiotics .
My sons donāt seem to understand that when they see me well it is false its the steroids .
I have been snappy at times and my husband is not very understanding , he is in denial totally .
He said well if you had cancer they would understand ? I explained again to him that it is progressing rapidly thatās why Iām getting more flare ups ? Also my GP is being so kind itās scary in itself , I said to her I was scared because itās progressing quickly , she nodded, smiled and said āI knowā . I said it is getting worse fast isnāt it , she nodded and said yes .. I am scared very and have nobody to talk to.
My sons and wives are very busy but they donāt realise that when they see me itās the drugs that are giving me a false mindset ( I feel well then) and my mood is not stable ( worse on a lower dose) .
Their Grandad became confused as I am but I am told by husband , thatās different he had cancer but he was on the same drugs Prednisolone , I am also at high risk of infection whilst on and off the steroids again Iām not sure anyone understands.
I have nobody at all to talk to I feel alone and very scared, Iād be grateful of any advice . Itās also impossible to get into the GPās however she is very good .
Iāve got a leaflet here but tbh as their dad ,who is great , doesnāt understand they get all their information from him and as they are busy I donāt want to bang on about it all the time I just want them to understand and appreciate I will be up and down.
I also have v bad associated arthritis and got diagnosed with ALCL right breast last year , this was an initial diagnosis from an initial preliminary biopsy , I have enlarged lymph nodes under my arm and although I got a Macmillan nurse and all the leaflets , travelled to east Grinstead and got told I would have to have a double mastectomy , when I got there the more extensive lab tests showed it to be reactive only .
I did get told by one son he felt I had been āless than truthful regarding my healthā I have not at all , they have had a lot of trauma bereavements in their lives but Iām sure they donāt understand my life expectancy is shortened quite drastically and I only found out last year .
The steroids do make me kind off āhighā and then when off not low but moody for a few days , massive apologies long post I feel mega lonely at the moment, I donāt live with my husband but he visits a lot not sure if itās just because he cares or is worried he doesnāt talk ever.
Thank you to or if anyone reads I have physio coming out next week and meals on wheels š, Louise x
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Louise3131
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I'm so sorry to hear of your struggles. Wish I had some answers. I'm having a bad day today and fit for nothing so forgive me for just sending you light love and big hugs x
Hi Fizzy31, welcome to this friendly and helpful forum. You have an awful lot to deal with and are understandably scared. Your family are probably scared too and certainly in denial.
Please ring the helpline during office hours on 03000 030 555 they have nurses who can talk to you and give advice.
Thank you so much x I have called before because my memory is bad and they donāt understand Iām in tears , and also because I was eating so much sugar but the nurse said itās because Iām trying to ge energy Iām drinking a half a crate of low sugar red bull a day minimum 12 cans a day to try and keep tidy Iām so sad x
Thanks thatās really interesting I do take quite a few supplements but this looks interesting I do think my initial post has been a little misunderstood but I was upset typing and if Iād of explained everything youād still be reading now or asleep lol.
This isnāt usual Iāve been like I said on steroids for quite some time and theyāre wearing off so Iām topping up temporarily on sugar free caffeine drinks I know they dehydrate but I also drink a lot of water and fresh pressed veg etc , this is purely because Iām trying to tidy and clean because I will be back in bed last week as even my fingers have doubled in size in the last couple of days due to dose reduction and finished tomorrow so all the anti inflammatory effects will be reversed and I canāt be in that bloominā bed again without being at least straight , otherwise Iāll be going mad and getting upset because I can barely stand when just taking pain killers , thanks and hugs will def check out note xx
Oops that shouldnāt read they donāt understand Re nurses it means my family apologies it reads wrong š
Hi, it's my 1st post too. I have had 3 Pneumothorax, have Emphysema, lung age 96(I'm 58),Lupus, and Rheumatoid Arthritis. My son lives abroad, and will never 'get' I have anything wrong with me. He often sends messages and says are you better now. š¢
Oh bless itās a total bugger , Iām going to phone the help line now but Iāll be back soon I think we can follow each other but I can work out once Iāve called , see if I can get some literature, keep in touch , Louise xxx
HI Louise. I have same problem with my family .I been trying to stop smoking and they know that yet they all light up their fags smoke over me and yet when niece pops round whos pregnant they straight away throw the cigs and open windows for her.How come they understand not to smoke with my niece their and yet carry on lighting up cigs when im their..I know I look fine and I tryed explaining about the condition and they still ignore.Im glad you got good doctor you also have on here which is so helpful as we all are in same situation having long term lung condition.Take care
Ah thanks for answer yeah I got a bit kind of fast with my answers and they were , well stop taking them then they have no idea and their dads not really good at explaining but the king foundation have been really good and sending me some packs out for me to give them they were quite shocked as Iāve been actually on medication/ steroids since end of June and 3 dual lots of antibiotics xxx crazy they couldnāt have done enough for their grandad x
Hi Louise, of course they did everything for their grandad but you are mum, you go on whatever the problem is, that's what mums are for, mums never tired or poorly, doesn't feel like playing,cooking,cleaning or being fun because she's mum.
I live alone except for my dogs and am quite poorly with different things but I have realised everyone has problems and lives, so no matter how lonely I get sometimes, nothing is going to change, they will come and see me at some point and ask how I am without listening to the answer of course but am I going to be bothered, no, I'll do what I want when I want and that includes feeling very sorry for myself sometimes but does it help? Of course not. šš»š¹š¾š
Exactly Penny , I donāt really have all the playing etc they are nearly 40 Well late 30ās and their priorities of course are their own families , Iām not after special attention or anything just to feel like itās been acknowledged .
But I came in really not to discuss my family so much as a way of explaining if anyone had any ideas and they have Iāll get some more info from my GP and I have some coming from the lung foundation and see how Iāll go and keep you updated , thanks so much xx
Iāve just seen your post Madonna. Anytime someone lights up , start coughing and go to another room perhaps then they will understand how it is so uncomfortable for you. I am not so polite but if my family did that I would be furious It is so hard to make people realise how awful this disease is
So sorry Fizzy31 that you feel so bad and sad! Your family is in total denial. They do not want to believe your ill, if they did...it would hurt them. Just a coping mechanism! My son in law did not believe I was sick either, because I have always been the energizing rabbit! So my Doctor wrote him a note and stated that I am ill from my heart/lungs/ diagram. It is frustrating when someone doesn't believe you. Stop focusing on them...focus on you! We can turn blue trying to get others to believe us...and it does no good. It just hurts yourself! So do something nice for you everyday. Write-write-write it helps balance the brain! and you hang in the girl! Janet127
Ah thanks so much , Iām not really focusing on them but they live v local to me and are both married with wives and children I live alone so if they realised Iām sure theyād say Mum do you need anything ?
Iād more than likely say no but they havenāt offered even once lol doesnāt help as my husband pops in and doesnāt really tell anyone at all , so nobody calls me anymore apart from that Iām in bed a lot but they donāt see me then , they only have seen me on the steroids .
I know what you mean though, writings difficult as Iāve got joint pain in fingers etc most of the time but Iāve got other things I can do if well , so kind , nice to get an answer my goodness Iāve felt so lonely and that sounds a bit sadššš thank you x
Love the handle 'Fizzy' mind you if you are drinking half a crate of red bull each day we should here the resultant caffeine explosion from some distance away.
Take heed from all the good advice you will get on here,you don't have a death sentence and with your recent spirometry showing 56% fev1 which if done at the docs surgery is worth taking with a pinch of salt along with the red bull as they are notoriously unreliable you have plenty of lungs left to play around with,ignore the lung age,at the last count mine was about 180 and it is merely used as a shock tactic to get you to lead a healthy lifestyle.
Best wishes with what will inevitably be a long and enjoyable life once the family can get to understand that you do have a condition but it is perfectly manageable with meds,lifestyle choices and understanding.
Thank you , but those readings were on diagnosis and my issue has been with people disregarding what Iām saying , I do understand but also Iām concerned as I said itās been quite rapid since then a year ago and I am no longer able to walk unless Iām extremely high doses of steroids , I have a very high pain threshold but at the moment even my finger tips are hurting typing šš I understand the condition very well but my issues is with my family expecting me to keep up if they are walking to a car , I can barely get to the end of my drive and have not been able to walk around a supermarket for just over a year
So I suppose itās natural to feel a little concerned and isolated
yes I do have other conditions and i understand them well the question though was in regard to COPD and my family , I have enlarged lymph nodes under my arm and lymphedema ( it hasnāt spellhacked me but Iām sure itās spelt oedema ? )
The lung foundation were excellent and very helpful theyāre sending me some more information a bit more relevant for my family to read Iāve had a viral pneumonia that hasnāt cleared and am coughing up an awful lot of junk after being on 6/5mg tabs a day since July and multiple lots of dual antibiotics doxycycline and amoxicillin also some others waiting on another test at the moment , but thanks v much I feel better now just knowing so many people have answered so kind of everyone š¤
I was told this by my consultant. With my results I should be on 24/7 oxygen but am not. I get around and do everything..my consultant told me to keep doing what I am doing as its working. When he saw me he expected to see an elderly lady struggle through the door. I breezed in like a teenager and he was shocked. It's all about Positivity and not giving in. Keeling active as best you can. Don't have to exert yourself in the Gym just walk around window shopping .great fun and meet lots of people. Wishing you well.xx Sheila.
Hi Louise I thought it was a slow progressive illness and if you did exercise it would slow it down or even not progress.Why has yours been so rapid within a year?
What a lot for you to cope with. It can be very difficult to help other people understand respiratory problems and lung disease because they can't see it and don't know how it affects you. Hopefully the info you get from the British Lung Foundation will make it easier for your family to understand what you're dealing with. š
Yes I hope so because once they know properly I can then when they ask how I am I can say yes Iām ok but currently if I say that they assume I can have a gentle game of tennis which because I played every morning and afternoon prior to all this , my grandson plays and my son Coaches at the club .. itās so upsetting itās my favourite thing and I did try but I just stood still returning them , and then yep fell over as my joints are full of arthritis , they did realise a little more then and they know how much of a fighter and how competitive I am ... not to win , couldnāt careless about that but Iāll fight for that point šššš
Phew....... What a load you have on your shoulders. I'm going to have to lower my voice to a š whisper here for fear of insulting the gentlemen in our group but here's the thing. I have a theory that men (generally) are terrified of anything they feel they can't control. Illness being way up there on the list. If your sons take their cue from daddy, then it's even more so they won't be able to fathom it, as daddy knows best. And if daddy is in denial.... š
You took care of your boys when they were little, changed their nappies, fed and cleaned them, got them to school and back, helped them with their homework, got them through their first heartbreaks, encouraged them through their exams, in their minds you are their invincible mum. Look!! They think to themselves, mum is still standing upright, it mustn't be so bad at all.... she's fine.....NOTš. There is no way on earth you are ill and worse dying. Inconceivable. Just think positive and it will all magically dissipate. Their little rain dance. I know believe me. š
I have an inkling as to how things are with your husband, and although it may be sad (?) to be living apart, it may also be a Godsend. There is nothing worse than living with someone who has no clue and refuses to educate themselves about your illness. Find out what you can do about helping yourself cope. Maybe pulmonary rehab, medication review, or even the possibility of a lung transplant.
But amidst all this you must live and not be too ruled by your illness. Do not to forget who you are or what your passions are. If your family won't join you on this journey you must go it alone until they will. Or else you will just be hurt every single time they insinuate that there is nothing wrong with you. We are here for you.
Oh Cas , thank you thatās exactly it although my sons are in their late 30ās and incredibly smart, they are perfectly capable of understanding .
We live happily apart and remain good friends no sadness we visit our Grandchildren and families together also which is wonderful for our Grandchildren as only one had ever asked why we dont live together . ( thankful that other GPās have more than one house) .
I answered with , well Grandad likes the beach there and I like this one , we are both on the beach and less than five miles apart.
I think you totally right and this is my husbands issue I donāt think he really understands itās progressive although he says he does.
He is probably the only person I see now but he has a social life ( not much) and I donāt.
If anyone , even my neighbour who is a nurse and has asked after me ( she bumped into him in shop ) and he just came back and said ā oh I saw ? and told her weāre getting a trifle and watching a film?ā I asked why he said that and he said he doesnāt know.
I explained my neighbour would probably have popped in for a coffee had she known I was actually in bed sick and we werenāt watching a film and the trifle is for me .. Iām eating a lot of sugar and the nurse said itās my body craving energy that it canāt find .
Iāve always been an exercise freak and watched my weight and still am trying to do that.
Iāve gained maybe seven pounds .
All I want is an acknowledgement from my sons/ wives .. one asked what was wrong with me only a month ago , sheās a teacher and very smart ? My son hasnāt told her therefore that means my H hasnāt explained Lord he was like this when he lost his Dad!
Anyways what a lovely thoughtful and kind post rather than telling me to ho around shopping etc .. I would if I could Iād love to .
The lung foundation are very good and are sending some additional information packs for them to read.
Itās the risk of infection as my immune system is totally out and even though I ask they donāt volunteer the info if one of the children are sick or they have a cold etc .
Itās really bizarre as they are so good usually , lots of love and I will post and answer some posts really soon ,
Sending you loads of hugs louise...So hard for you to go this alone, its lovely having this group you can talk to but it doesnt beat having someone sitting in front of you talking having a cuppa. If i lived close by (not sure where you live) i would pop around. Its so hard for some loved ones to accept how ill a person is denial is the easy option. Unfortunatly its going to be too late for them to recognise how ill you are, and the guilt they will feel (not your fault ).
Why dont you ask for a print out from the drs with how ill you are and give them to them and give them a harsh reality of how ill you are. Cruel i know but sometimes you have to be cruel to be kind. Or make an appointment with the gp and take the family in with you,let the dr explain to them how bad it is.
As far as your neibour is concerned, if you want them to know write a note to them and post it in their door (dont ask your husband he proberly wouldnt do it.I imagine they would be gutted if they didnt know and it was too late.
Your loved ones may not like the reality of it but you have no option but to live with the reality and personally i think they are being selfish and need to stop thinking of themselves and start thinking of the one that took care of them when they were growing up.Sorry again sounds harsh but its not fair you dealing with this alone.We are all here if you need to rant.
Thanks Lyn itās not as simple as that I think because he pops in they assume that heād let them know and I know him well enough to know he doesnāt want to worry them as well as he doesnāt understand .
They would never come to the drs with me they barely get time to go themselves and they are forever taking the children to clubs etc and work Long hours.
I asked my husband to come in he said no .. but I understand him heās like a bloody ostrich !
Thanks so much I will stick around on here and thanks again xx
Babe! I managed my diagnosis etc alone, & in many ways that sounds easier! Like many others with COPD I don't look that ill, infact I'm proud of my appearance & enjoy getting my haircut etc. However, I use ambulatory oxygen, have the lungs of a 139 yr old! & am out of breath crossing the room. Your family will come round, I'm sure, but until then percervere! Download & print off information from the British Lung Foundation & distribute it widely! Sit them down & test them on it! They will be worried for you, too - & denial is a well used coping mechanism - but you're going to need these people, & if they're not up to speed on this they'll be no good to you. It's not all miserable, though - I do get black days, but I also manage to have some brilliant times!
Get yourself on a Pulminary Rehab course, find a Breathe Easy Group, arm yourself with as much information as you can. Wishing you all the very best xxx
I am so sorry that you are feeling so lonely. Ask your nurse is there any groups close to you for people with COPD so that you could have a chat with people who know what you are going through. My mam goes to one of these groups ones a week and she really enjoys it. Xx
There is one but itās about 20 miles away and only one the first whatever of the month I think x I can go age concern as they have things on and I like older people a lot
The GP print out is good but they are so overstretched itās crazy 2 GPās and 12,500 patients theyāve been trying to recruit for years but Iām scared to change as their all the same here , Kent coast
As the saying goes, 'not all disabilities are visible'. I am on my own entirely - don't have any family. My husband passed away 4 years ago. I have a small number of close friends I can count on one hand. It's all very well people telling you to think positive but it's not always possible. It must be really hard when family members don't either appreciate or understand what you're going through. Unless someone has the 'same' problem you cannot expect them to understand. You have to live it to know it. I too have severe COPD and brittle and allergic asthma. Lost count of the number of hospital admissions I've had. Heard one nurse say when in hospital, 'Oh, she's a regular visitor!' Sometimes I feel terribly alone and depressed. It's easy to say but in reality you can do one of 2 things - allow it to take you over or accept the situation and do everything in your power to deal with it. Not easy, I know. I'm about to have some counselling as I often feel that life isn't worth living. At the end of the day, YOU are the only person who can help YOU. For me, it's all about pacing myself, feeling the fear and trying to do it anyway. I often have panic attacks which makes the situation even worse. My thoughts and prayers are with you, Louise and if you are able to carry out even some of the suggestions given by others, then I feel sure that will help. xx
Yes exactly Iām not exactly pessimistic but ignoring itās not going to help , I came on here because I canāt go to the gym etc .. I have lots to do but I canāt do it my joints are really swollen .. I love shopping but as I posted initially I have other problems that prevent me walking very far at all Iāve got lots of mesh tangled in my pelvis that they canāt get out Iāve seen 4 surgeons and one was the top surgeon for preciseness in the country and she said she will have to cut my bladder and bowel to get out itās v complicated and I have cysts / fibroids and a recurring abscess in my Fallopian tubes which is mega painful so Iām seeing someone again next week about that but at the moment Iām not fit for surgery anyway
Hi Louise, so sorry to hear of your troubles. Alot of families just dont get it and are too busy living their own lives. I also think you need to be straight, ask them one at a time to do a bit of shopping for you, when they come round sit and have a cuppa with them and explain how you are feeling. This could help them to understand and also help your loneliness, you are lucky having family nearby, get them to help you. You also need to get off the sugar, it is soooo bad for you, it may give a temporary rush of energy but goes down so quickly leaving you more tired than you should be, a balanced diet will give you more energy for a longer period. Exercise also gives you energy, just moving around will exercise your muscles. I have rheumatoid arthritis and have torn the tendon in my shoulder, so understand moving is painful , thankfully living alone forces me to move and I cook everyday. Dont get me wrong there are days when I cant move and in so much pain it seems impossible, those days I rest. Phone your neighbour and ask them to pop in for a cuppa, if you dont have their tel number ask your husband to get it for you. I do hope you find some solutions, its not nice being poorly and alone x
Thank you but I have sugar free drinks and I need some sugar ? My diet is amazing tbf and the consultant who did my bloods was seriously impressed Iāve always been mega fussy about diet and exercise yes Iām having caffeine and taurine but Iām also getting tons of vitamins from it , all bās folic acid etc Re the family as I said itās more complicated than that ones a headteacher as is his wife working really long hours and Saturdays , the other has an estate agents and a recruitment company to run when they are off they are running the children to clubs today one has tennis then football then my son tennis coaches my granddaughter goes to ballet and gymnastics and the others have even more on so they really wouldnāt appreciate a coffee to tell them how sick I feel , I so totally know what you mean but in my life itās not that simple my son called on his way home from a London meeting at 8.30 this week rushing to get back to say goodnight to the kids ... but I have some information coming that I can pass on .
My husband of course would put a note in for me , heās in denial but heās not deceitful heās trying his best just getting it wrong lol , totally he doesnāt want the boys worrying before they have to I think .
But he hasnāt realised thatās not helping me xxx
Louise, there are so many wise and experienced people on here so hopefully they will help you to feel better. It usually works for me . Look after yourself xxx
Please donāt feel alone we are here 24/7 if you want to chat or vent then just message me. I am like you in that since before Xmas my condition has worsened quite a bit.
And I have no one to talk to about it some of my daughters know I am ill but not how far it has gone. Being lonely is the worst feeling in the world I think. But we are here for each other and know what you are going through. It makes a big difference knowing youāre not alone. So please remember if you need to vent or chat just message.
Hia people dont understand as we look quite well .i from life overseas . Working this country not kind to disabled . I totally on my own with mad cat they understand, suggest all wrong a nice glass white wine , do u have nebulisers.. eat well no dairy . Have a massage acupuncture. Ok make life nice for u . I have young carer I hr day help wash dress . Make coffee btreakfast . Maybe ask help . So sending good wishes .
I just got over pneumonia for first time and the anti biotic treatment including the steroids was a it is a nightmare. Still have the cough which seems never ending. I was prescribed a black box anti biotic and will post separately about that nightmare. I am at a stage 2 plus and have been for a few years with serious balance problems. The biggest problem with COPD is that you look fine and so people seem to assume you are not as bad as it is made out to be. I start a COPD REHAB program this week which is a few hours a day twice a week for 4 months and will let everyone know.
Hi thanks yes it affecting my balance now Iām quite unsteady on my feet ( ok if on steroids but has to be high dose) Iāve not been able to get rid of pneumonia in a year really Iāve just have kept it at bay really Iām in a lot of pain with my joints now they are swelling xxx
Oh dear Louise 3131,I am so sorry to read your problems I know what it's like .
To try and fight infections off is when I travel with the bus I have my nose and mouth covered because people coughing,when I get home I wash my hands straight away ,or before I cook wash hands if I snezze,I wash hands and so on I feel it does help.
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