Should I have stayed indoors???

Hi everyone.

I've been taking the rescue pk,so thought I would venture out to do some Xmas shopping.

By the time I got to the bus stop however,I thought I wasn't such a good idea.

Anyway,I went into town,had to stop and sit every few steps.and it has scared me.

I met my daughter,who just does not understand how it is to not be able to breath.

I left her to it and came home,apologising.

She has just asked me how I am feeling.all I could say was,the same.

She suggested I go to see my gp,as I cannot be holed up all winter,and he may be able to give me something.(yeah,what like new lungs).i don't mean to sound nasty,I love my daughter with all my heart.i just wish she would understand a bit more about my condition.

It's not a matter of being 'holed up all winter' is it.its about taking care of yourself during the bad times.

She just doesn't understand.

Xxxx

11 Replies

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  • You might want to contact BLF for some leaflets or get same from your local breathe easy then you could leave some with her, or send her the link to looking after your lungs in cold weather. There's a blog here I think if you use search box and also several pages on BLF.org.uk

    Stay in over coldest days, I don't venture out when temps are below 5C and not at those temps if I have a lung infection, hope you are feeling better soon.

  • It's just an idea but why don't you get your daughter to read some of the blogs on here. If she knew how many people have the same ailment maybe she will understand a bit better.

  • it is very hard to be understanding.I often have to bite my lip, as i'm sure you are aware.

  • thank you sylb but i think i've said before, patience is not one of my virtues!I can sympathise with both sides of the original post.

  • I agree about showing your daughter your posts. I also agree that being an 'invisible' disease to an extent doesn't help and often hinders. But don't take this the wrong way, as my dads carer, I have come to learn that he will often say he is fine when really he isn't so if you don't open up and be bluntly honest, your daughter may not be able to understand. When you are ill you don't often feel like you want to 'bother' people and that you are aburden at times, I know dad does, and we can feel left out if you know what I mean, when all we really want to do is try to understand and help as best we can and if you don't tell us we don't know.

    Telling us how we can help goes along way and also telling us what doesn't help.

    Trust her and open up, give her a chance x

  • Hello, I am so sorry but I do understand what you are going through. My husband has severe COPD and Bronchiectasis and is also on rescue packs. We have two sons, one son understands what my husband is going through as he has a friend in his 50's who has COPD and he sometimes stays over at his house if they go out at the week-end, and he says how frightening it is when he can hear his friend in the bathroom coughing and having breathing problems in the middle of the night.

    Our other son as no idea at all, he keeps saying, 'isn't he any better yet'', he cannot get through his head that his dad will not get better he will only get worse. He cannot get to grips why we have to cancel outings at the last minute because my husband has a chest infection and has to be on his oxygen and nebulisers. What he doesn't think about is that I am stuck in the house 24/7 looking after my husband, I am also his carer, and it would be nice if they would just say, we will sit with dad whilst you have a couple of hours to yourself but they don't.

    I don't know what the answer is for you and us apart from telling them to put a pillow over their face and try to breathe, this is the only way to let them know how you feel when you are struggling for breath.

    There must be more of us out there in the same position whose families lose patience because we are always having to cancel outings, they don't realise COPD sufferers change on a day to day basis.

    Anyhow, look after yourself and know that there are more people than yourself with families who don't understand what we are going through.

  • Ahh,sweething,I feel so much for you my love.

    I have severe emphysema and bronchitis.and 2 daughters.one who lives at home,so understands fully what I'm going through.

    My other daughter has her own health problems,so maybe that's why she doesn't understand so much.head in the sand and all that.

    I am not normally as bad as I was yesterday,it's just the chest infection that I'm not over yet.

    But today I've just been putting Xmas decks up,and I'm still struggling to breathe.

    Hope to start to feel normal soon.

    Many thanks for all of your replies,it's amazing to know you can come on here with a problem relating to your illness,and there are so many lovely people ready to help you.

    Take care one and all.

    Lots of love.xxxx

  • I wouldn't have gone out poppet, or at least would've come home when I started to realise it wasn't a good idea. And my lung function is good! I commend your determination, but it's very cold just now, and if you're SOB it's impossible to nose-breathe, which means the freezing air isn't being warmed and filtered. There's nothing worse than cold to seize up the airways. By the time you got off the bus you must've been quite exhausted.

    I do all my xmas shopping online now - a) I hate shopping b) the shops are too crowded and going in and out from the cold air to overheated shops, people coughing & sneezing all over us, makes us more prone to infection.

    Tell your daughter to put a peg on her nose and a straw in her mouth and walk up & down stairs and round the house for 10 mins. She'll soon realise how exhausting lung problems are.

    love, ff x

  • Oh, I feel quite sad reading this. My Mum has early COPD but has just suffered her 2nd ever flare up & is finishing her rescue pack. I feel nothing but huge sympathy (for want of a better word) towards my Mum. I hate seeing her so poorly, especially knowing that is it only going to all get worse in time. We ended up a A & E 2 weeks ago (breathlessness/genuinely thought she was dying) and I have never been so terrified, same for my Mum I think but she was putting on a brave face. We were sent home after 5 hours and told that her meds just need to be optimized and to wait for her referral to come through for the Respiratory Clinic in Lymington Hospital (GP had made referral 2 days previous)The Dr at hospital just said things will only get worse and that my Mum will eventually end up on oxygen. Things we know but all a bit harsh in my opinion. In the end their only concern was her raised blood pressure - 221 over something! Turns out 2 days later she had chest infection and told to use rescue pack immediately. Hopefully Mum is on the mend a bit now, certainly feeling loads better.

    I just want Mum to be comfortable and feel healthier, I would then be happier for both of us. Cancelling days out would be the least of my concern, these family members should just be grateful to have you Mums/Dads around x Big hugs to all x

  • Awww Deballah, it's so hard for daughters (and sons of course). Noone wants to see their parents ill and struggling. I think for some relatives their anxiety shows itself in the form of irritation and apparent lack of sympathy, like with Fantasy's daughter, then the person think they don't care, which is terribly sad as you say. My daughter is like you, very caring, but luckily I'm really well at the moment, but she still panics whenever she thinks I'm showing signs of a chest infection.

    I've got bronchiectasis+asthma+abpa, ie not COPD, but from long experience of lung problems I'd like to say that I don't think you should take any notice of the A&E dr. What a thing to say! I had a registrar say something like that to me once, really freaked me out, but he turned out to be wrong, wrong, wrong! If your mum has mild COPD, doesn't smoke, has good medical treatment and takes care of herself in terms of avoiding infection as much as possible, she can stay stable and well for many years. Wait til you see the resp consultant, hopefully he/she will give you and your mum more confidence. Meanwhile why don't you phone the BLF helpline on Monday and have a chat with them, I'm sure they'll reassure you.

    love, ff x

  • Thank you for your response ff. So far I have to say I am less than impressed by the care my Mum has received from GP's & A & E Dr and some of the comments made. I really cannot wait for her to see a specialist so she can hopefully get the best possible diagnosis and treatment.

    Mum was originally told early signs of emphysema last year after a scan so I am hoping that is still the case. Unfortunately she seems to have a few conditions which are aggravating each other - scar tissue - very sensitive throat, from thyroid op & goiter (15+ yrs ago), hiatus hernia (3-5 yrs??) - both causing on-going cough and so inability to get a good nights sleep (Mum has been trying to sleep propped up for years) Then most recently this problem with her chest & lungs which seems to got a lot worse recently.

    What you have said really gives me hope though - Mum has been told early signs of COPD, she doesn't smoke and takes good care of herself - so fingers crossed!

    It is just hard to watch, Mum's general health has really gone downhill & she seems to have aged overnight. I am trying to stay positive and strong for her though.

    Any tips for maintaining good health or living with this condition for my Mum would be gratefully received.

    Thank you so much for taking the time to reply x

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