I don't know about you but I find it particularly galling that I am able to accomplish less than I could a year ago, six months ago, even three months ago etc., etc. I know this disease is progressive but it seems that the clock has speeded up in my case. I was relatively OK for the first 7 years or so, but hit the wall after 11 years and it seems that the only way now is downwards! I really must stop this self-pity!!!! But there I've said it LOL
Particularly galling: I don't know... - British Lung Foun...
British Lung Foundation
It can go like that sometimes Martin, but as you don't mention medication i'm wondering if a medication review with your doc would be helpful?
I quite agree with O2Tree. I also wonder if you have ever been referred to a pulmonary Nurse Team? The nurse would assess you and could put you on Pulmonary Rehabilitation, This is formed in a group of people affected with lung problems. The beauty of this is that youg et to know much more than just through your consultant. She would abate your anxiety and also give you tips on how to manage your illness, manly through gentle exercise. However limited you are, you can do some movement. Have a look on a Chinese exercise called 8 pieces of brocade. I do this every morning and have flet much more energetic.here's the Wikipedia explanation of what they are
And here's a YouTube video:
You can start them very gently and within the limit of your shortness of breath. The beauty about these exercises is that you do them with your breathing. So you develop strength in your breathing.
Sorry. all this is a bit long, but I wanted to encourage you.
That sounds very similar to my husband he seemed ok really for about 7 years and then was very ill and ended up overnight in hospital since then he has really noticed a decline and gets very very frustrated. The only advise I can give is don't give up the fight keep active its the only way!! Try to find something funny to laugh out loud every day at least it distracts!!!! TAD xxx
Some good advice there Martin.Dont apologies for your self pity,we've all been there! But you do have to get a handle on it,& find things to lighten it up a bit,before it overwhelms you.
Most of us,I'd imagen,have quite sometime of feeling ok,& it does hit one,when things start changing.
Have you thought of doing a rehab course again,presuming you did one earlier,as that may help.Take care Wendells xxx
Hi Martin1945, know the feeling and it is frustrating. I would agree with Wendells. My way of coping is to look at what I can still do not what I used to be able to do and I do things different ways to make it easier, which is something maybe you could try. Always remember too, getting older changes our ability as well as the illness. Remember the saying "always look on the bright side" I'm on a life lung exercise regime which you can attend on a regular basis to maximise what abilities you do have and help the breathing. Look to quality of life not quantity. Take care and enjoy each day no matter what.
Thanks everyone for your positive comments and advice, it really helps, really! Sometimes it is difficult to differentiate between getting old and getting iller (is that a word? LOL)
It's helpful sometimes to shout that this is crap. Cos it is. Then when you've acknowledged it ...you can look at positives and choose things you still can do and enjoy. Xxx
Julie, thank you for this honesty. We are all only human and it's a lot to take sometimes. I agree with you 100%
One of the best pieces of advice ive seen on this site is try not to look back at the things you used to do just adjust your life to makin the most of the things you can do.Lets face it in later life people do end up with something unless they are very lucky so try to stick 2 fingers up at the COPD and carry on.Some days its hard but you are not alone x
Hi Martin 1945,I think we are all the same this time of year, it's May but it is still cold and of course this doesn't help our chests.Ive only got 26% off my lungs working it is very important that you keep warm,it's quite easy to sit down then realise how cold you have gone. I'm on Holiday in Gran Caneria in two weeks time and hope the warm weather will help.look after yourselves to all members.
I've been at this 15 yrs now and the last 4 have been the worst. Gave up my car 4 yrs ago, my wonderful cat to my daughter last year and it seems that my "I can't" list gets longer each day. It's just the way it is and we have to deal with it. It's a hard disease to deal with but there is no choice. Keep on keeping on...
I have got the attitude that the one thing you cannot change is the past. I do get frustrated at what I cannot do now, but try and adapt. PMA and a good moan now and then does no harm.
Hi Martin 1945, I think the suggestion of a Pulmonary Rehab course is a good one if you can get a referral. Also, is there a Breathe Easy Group near where you live? If so you will meet people in a similar situation to yourself and you can talk to them and find out how they manage - also there is usually an interesting talk and a cup of tea and a biscuit - can't be bad. Good luck. Take care, Lizzy.
Martin 1945 I know how you feel not so long ago I had a good old moan as I could not find any one to do my patio for me which I would have my self not so long ago now I can laught at it as now I am getting it done as I am now talking one of my sons throw it plus I thought if I get on the floor and help him then I am getting exercise as we'll ok all I am doing is putting the spirit level on it I did try and tap one or two down but found it a little hard but allways had my pump at hand now I fell I can do something I know it is small but it dos not matter how small or how large it is we can all do something we use to do . So start stop rest start stop rest just do not over do it . Then happy days
Looking at things I can do ...... not things that I can't do.
I really like that, Yessiree I really like that!
Hi Martin 1945 ,it"s ok to have a good moan.I don"t know what your breathing problem is but i"ve got ILD and bronchiectasis and was coping well for several years,but had to finish work last year and my health has rapidly deteriorated since then and now I'm on oxygen 24/7 .I agree with the posts keep positive and do as much exercise as you can manage.Live life to the maximum you can manage i wish you all the best.
Thanks guys, I really helps to know that I am not alone. I try to exercises as much as possible - I walk my verandah early each morning - all up about 1 km. if I am lucky. Exercise bike - between 4-5 kms. I've just been sweeping the patio of leaves and seed pods (little bug=*rs). It did take three breaks to get finished. I did PR three years ago and still try to follow and exercise regime, diet etc. To those that haven't tried PR, please do your best to get involved. Martin
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