My visit from the nurse

Hello everyone. X. Thank you for your replies , I'm beginning to feel I have support already x but still trying to work my way around this site. Lol. Technology. Eh ? Lol. Well today I saw the male nurse about my ipf , he was to the point and almost matter of fact about how I am feeling , however that said. Perhaps it was a good thing ... He said none of us know what will happen in the future and that you have to live your life daily and enjoy the things you can do, when you do them ... Hmmmm .... Easier said than done. But he is the professional after all .. I feel like he shook me up and told me to accept this illness and move on , take medication regular and on time and you will be fine ... Basically how long is a Peice of string ... He said you are fine at the moment ... Whatever fine means ... I feel like a snail breathing through a straw lol .. But that doesn't stop me worrying about the future .. I'm now resting ... Again lol .. I almost feel silly talking to my son about this illness now. And will just have to get on with it ..... I hope you are all coping today xx

13 Replies

  • remember we are all here to support each other, people who don't have lung problems don't know what its like , but some of the points the nurse made are true about living life daily doing what you can and making the best of when days are good , never feel silly talking to any body the more you talk to family and friends the more they can understand what is happening remember some one is always here and it might just be a few words of encouragement but belive me it does help you take care and keep your chin up

  • Thank you xx I will start as from today to have a more positive outlook x

  • I know from experients it does get you down i dont have the same as you I have been classed as serve emphysema when I was 38 so came as shock and was hard at the time and was down to start but I thought make the best of every day I might not breath to good and have had to slow down but im going to make sure this disease wont take my sense of humory away

  • I'm thinking maybe il forget Ive got it and slow down too xxx. Thank you xx and I hope I restore my sense of humour too x.

  • I also hope you stay as well as you can for as long as you can x

  • thank you

  • I agree that all that advice "take one day at a time" is so much easier to say than to do. Banal it may be but it IS true. Cliches often are. And we have no alternative. Most of us here have lung diseases that at best are stable, some are deteriorating slowly, some more quickly. And it really, really is a massive learning curve. We have to take responsibility for our symptoms, and our lives. No one and nothing can take away our attitude and our personality. Tiny, tiny little sips of gratitude for tiny, tiny little things are the best antidote. And treats, of course, lots of little treats, and awards.

    Bugger the cholesterol.

    Hang in there,

    Love and hugs

    K xxxx

  • P.S. Don't forget the real meaning of "I'm fine."

    Look at my reply to DozyDormouse.

    K x

  • Hi Dizzy, you took what your health pro said as 'accept and move on' I took it as 'live for the moment and enjoy'. Once we get our heads round our health situation, we then need to do the things we can do as well as we can and stay positive, don't expect too much from yourself and accept what you can do with a sense of achievement.


    Ive been hearing a lot about 'mindfulness' recently and think that is what we all (healthy or not) need to be practicing.


  • Hi dizzy, welcome to this life saving site I was just like you and scared half to death of this horrible disease but believe me this site is a godsend , what ever your problem someone on here almost always helps and even if they can't loads of comfort when needed, like you I hid the disease or tried to from my young son cos I knew it was scaring him but now we talk about it and for a seventeen year old he so tries to help me, just knowing that gives me more zest for life, so keep on going ask away and try and relax when you can and as important move when you can lol take care xx carol

  • Pleased you found your nurses approach helpful. Are you able to have Pulmonary rehabilitation? People are usually referred by their doctor. Useful physiotherapy , condition education and acknowledgment of feelings, plus practical conserving energy tips. Love Margaret x

  • Hi you are allowed to feel down about your illness you know as we all get periods like that. We wouldn't be human if we didn't. The secret is to concentrate on what you can do rather than on what you can't - easier said than done I know. Another trick is to think of all the things you have which to be grateful for, family, friends, enough food and heating, a place to live and don't forget your HU family :)

    We are here for everyone whether you are having a good day or indeed a bad one, and the great thing is we all understand. Take care. xx

  • Well I did my exercises and I felt a lot better afterwards. Is slept like a log last night so that was an added bonus. Hope your all well today.

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