Have bronchilitis adult, and now working on half lung volume. My daughter's feel exercise will restore them and don't understand illness.

Does anyone else have family who don't understand lung damage is unrepairable. Finding it hard to get them to understand and as such they think it's a mind over matter thing. Consultant not suggested exercise.

[sassy59]

Many people have family that don't understand their illness because that is like admitting defeat and maybe facing losing a loved one so it is understandable. You can speak to your GP about Pulmonary Rehab which is a specific exercise regime for people with various lung conditions. If in doubt contact BLF and speak to someone there who will be only too happy to help. Good luck to you and hope things work out. Take care. xxx

[Hidden in reply to sassy59]

Thanks sassy59 for ur understanding words. Hubby has tried to get them to understand but unsuccessful. Just not a good feeling that ur daughter's don't support u as u would like. Still see me as the Nan/mum there when needed. Hope ur keeping well. Xx

[sassy59 in reply to Hidden]

Just keep on trying to get them to see how illness is affecting you. They love you and should understand in time. We are not too bad here thanks. Pete has his ongoing problems and I care for him as best I can. Thinking of you. xxxxx

[MarieW-F]

I have 29% lung function. I am 43. I walk my dog each day and swim 3 times a week. I can't restore my lung function but trying to keep healthy will make the rest of you work better. Rehab definitely helped and essentially allowed me to do lots more exercise than I ever thought possible. My lung function is stable, exercise keeps me fitter and less susceptible to infection. Good luck - its so difficult to try and explain to people that you can't get lung function back. Definitely speak to your consultant about exercise and what you can and can't do.

mx

[Hidden in reply to MarieW-F]

MarieW thanks for ur reply. Not sure what illness u have, l have bronchiolitis and 63. Had it confirmed by Brompton lung and heart hosp as my local hosp were not sure as my test results did not add up.My consultant has not mention or discussed exercise to me. Both my lungs are damaged and shadow on one. Perhaps that's why. Good to hear ur quite active and your views. X

[MarieW-F in reply to Hidden]

I have sarcoidosis (which has cause pulmonary fibrosis) and bronchiectasis. My lungs are damaged but I still try and do some exercise. Its not a panacea but I do firmly believe it helps. That said you should always speak to your GP before hand. That said it won't convince your daughters that theres nothing you can do about your lung function.

Marie

[Hidden in reply to MarieW-F]

MariaW. We seem to be at cross wires. U are promoting exercise as some sort of cure if not totally, and as such agree with my daughter's. Funny how my consultant has not spoke to me about exercise. As for my gp, l am not under her for this, but consultant have to go by what he says .Everyone to their own. U don't have what l have and our situations are different.

[Toci in reply to Hidden]

Perhaps you would be better off ringing the BLF nurses. Click on the red balloon.

[helingmic in reply to Toci]

Toci, on the new site the red balloon doesn't lead ot help line any more. so here it is: the number is 03000 030 555. Lines are open every week day from 10 am till 1 pm.

[Toci in reply to helingmic]

Thanks Mic. I thought they were open 9 - 4 ?

[Hidden in reply to Toci]

blf.org.uk/Page/Helpline hear toci xxx

[Hidden in reply to helingmic]

Hello Everyone,

This is Nick from BLF Direct (Helpine) Just to clarify we did open 10am till 6pm in the past but we now open 9am till 5pm sorry for any confusion about our opening times.

Kind Regards.

[MarieW-F in reply to Hidden]

Sorry

I appreciate this and I am sorry if we got our wires crossed. Of course there is nothing we can do to improve our lung function. You cannot get back what you have lost. I was just trying to say that if you can exercise, do a little with pulmonary rehab etc it can actually help with how the rest of your body functions. I could barely walk a hundred yards but after pulomanary rehab I can do much more. My lung function is the same as it ever was - I can just use them in a slightly better way. I will stop now. And apologies for the offence.

[peege in reply to MarieW-F]

Well, I think you're wonderful in what you do to stay as healthy as you can with 29% lung function Marie, it's amazing. I've read here that several people have changed their way of life with exercise and gone from moderate to mild xxx

[CornishBrian]

The only way that you are going to prove that your daughter is wrong is get on a pr course or at least follow the exercise regime and do the breathing exercises.The next stage would be to cook your daughter an extra special meal and tell her she was right. No matter how bad you are, exercise and breathing control can make a huge difference to your life.Do whatever exercise you fancy until rehab but get yourself moving and do those breathing exercises. You may loose weight too, which is a good thing as I heard that humble pie is stuffed full of calories....

Just so that you know, I have had lessions in my lungs for the last 25 years when I was first diagnosed. I have a lung function of 27% and although I have had to give up a few hobbies and past times, I have also been able to take on more. I am now 66. At 63 years of age, don't let the diagnosis send you into a down ward slide. Turn around, face it head on and start reliving your life again. Phone the BLF help line...they will tell you exercise , healthy diet and breathing exercises.

[Hidden in reply to CornishBrian]

Cornish/Brian.....we all deal with our problem differently. No l am not letting it get to me. In fact, this time next week l will be in crete with my hubby. Checked out area first for hills etc so it does not spoil my walks. One of the holidays l have booked this year, so l am quite active. Many of u mention rehab, which has never been spoken of either via my consultant or gp. My main thing is trying to get my girls to understand my problems and not let them think it's a mind over matter illness., more involved.As for humble pie, weight not a problem.

[peege]

Get all the leaflets from BLF and give them to your daughters to read. They have good information on bronchiolitis

[srhawley]

I have moderate emphysema FEV1 of 57 and I walk at least 40 minutes a day and feel much better for doing it. We have to keep moving if at all possible and although we aren't able to undo the damage to our lungs, we can have a better quality of life and hopefully slow the progression of our disease.

[ermintrudexxx]

My family understand and my gp referred me to breath easy group. Oxymeter was reading 79 to 85, did course 6 weeks then referred to gym twice a week with same people at course then swimming group twice a week, wow! certainly works but you have to push yourself. Remember Usain Bolt gets breathless when he runs why wouldn't we copd's

Try it.Contact BLF for the nearest Breath Easy and ask gp to refer you Ermintrudexxx