Hi All, I have only just joined this website. I titled this first message 1000 days as 5 years ago I was diagnosed with IPF and the prognosis was 50% die in three years etc. We have all been through this trauma and I have now reached 2 years past my sell by date.
First many things are in the mind, I have a condition, not an illness. This has helped a lot although I have been on Perfenidone for 3 years (now on 3 tablets a day and not the 9). I am also on ambulatory oxygen but exercise regularly (even if I don't really feel like it).
Second, I am a member of the local Breath Easy Group which gives great support and helps you realize there are many worse off than you (COPD).
Thats all for now, I don't want to bore you with detail but will be in touch again.
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BoomBaggy
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Hello Boombaggy. (Great name) Welcome to this forum. Love your attitude. Yours is a nasty condition (I won’t call if a disease) but you seem to be coping with it, well done. I am glad you are getting help in your Breathe Easy group. Keep in touch.
Having a condition rather than a disease is 100% the right way to approach it. Whilst we have have a "condition" it is not communicable which is not what the word "disease" conjures up
Hi BB. How do you find the balance between exersize and fatigue I have bad breathing and find that to maintain workouts that I feel drained and think how this gong to help me when the day after workout all I want to do is rest or sleep I do push my self and more or less. Cope on my own it's a bit of a struggle. I have my good friend on stand by and she does if or when I need her. Will do and as done every think. But. I love to be independent I feel that I've I gave up pushing I would go be the end Ian only 52 Waiting for a answer this sept for possibility of lung transplant. You have very bad illness. Can you not try for transplant too BW. Take care. PJ
WOW Tricity that is the question. I do wonder if I am doing the right thing as sometimes I get total fatigue not just tiredness. I go to bed early and can sleep for 10 hours and still have to force myself to get up the following morning. I try to keep fit and not get on the downward cycle, you must keep positive its all in the mind so they say!!!
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Update
Frightened
SWOLLEN ANKLES WITH LUNG CONDITION
Balance between exercise and lung issues
Please help!
