Post Diagnosis

Do you think we behave differently after being diagnosed? I certainly do, was diagnosed with IPF in Feb this year and now find I think about everything I am going to do, when,how,where etc............yet just six months ago I could go off for a hike in the woods with the dog for a couple of hours......... sure I would get out of breath and stop for a rest a few times and have a drink. Now I won' t go up the woods unless I strap an O2 bottle on my back.................... can a lot of this be in the mind?. I know we all have (whichever) the disease we have been lumbered with, but I often wonder if did'nt know would we behave any differently?............

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  • Obviously the damaged lungs cause most of the breathlessness etc., but I would agree that there is a slight psychological element as well. I notice that when I'm doing something I enjoy or out with friends, I seem to be less breathless or if I am it doesn't register with me. But when I go out for a walk in my own, or to exercise, I'm hyper-aware of every little change in breathing and nervous that my sats might be dropping.

  • Fascinating subject Romfty. I have often wondered how things will/would be for me if/when I do get a diagnosis. I have only about a third of the diagnosis: chronic thromboembolic disease but there is also a chronic obstructive airways disease in the small airways (maybe obliterative bronchiolitis? Chronic and fibrotic like yours) and I am hoping that once I do get a diagnosis then I can stop agonising about it. At the moment it is very difficult for me not to constantly keep measuring how things are. Is it stable? Or worse than it was three months? Can I do this, that or the other? I was hoping to chuck away all the papers I have accumulated and delete all the website info and just get on with what I can....

    If it is OB then I will be picking your brains as it is like PF in the bronchioles not alveoli.

    Love and hugs

    K xxxx

  • Interesting topic. I was diagnosed with COPD 3 years ago but for ME the diagnosis was a relief! Prior to that I had years of undiagnosed breathing issues combined with travelling around the country seeing NHS and private doctors trying to seek answers. Plus taking meds that didn't help. Even asked my GP if could all be psychological!!

    NOW I know am not going mad... Take meds that help and make a difference and symptoms make sense!

    Yes I know I have a serious medical condition etc and I DO have to take some serious meds for depression but overall my diagnosis has been positive.

    Guess it depends on each individual.

  • Before I was told I had copd, Id gone to docs with what I thought was a totally unrelated problem. after having a cataract done was told i had low oxygen level, read up a little on it, and saw my own gp. Before I knew it I was having a spirometer test and told 43% lung capacity. Now before this my mobility wasn't good having a degenerative spine with protruding disks, and every now and then the back would 'go' and I struggled to get mobile again. I could see i was getting worse. The shortness of breath I just put down to ageing (only 60) and the remnants of the ciggies Id given up 14 months previously.

    As for behaving differently, for me, massively yes, read up on copd, found you lot (love ya all to bits) my whole life has changed. I was always a positive person, adapting to any problem that engulfed me, but this, my every waking moment is geared towards a fitness level that will see me through the next 25 years at least, and in 8 weeks I can honestly say apart from a ventolin inhaler everything has been free or cost next to nothing to improve myself to a level I would say was on a par akin to how I was 20 years ago. (exaggeration?) Don't know don't care, its how I feel and Im so thankful to members, BLF and a positive outlook. Oh and the odd dvd, youtube vid, and a redundant exercise bike that grandson used as a clothes horse.

    xx

  • Well said on all the above, I went through the pain barrier also, before I was diagnosed I never noticed anything but when I stopped smoking I was getting short of breath after being out walking, the chemicals in the cigs open the airways hence when you stop you notice breathlessness, after I was diagnosed with bullous emphysema for about a year I was besides myself, met yous on here and studied up on my condition, I stay focused on the long term and deal with what comes up on a daily basis, life is for living, I'm actually blessed I was diagnosed at such an early stage, it was the kick I needed to turn my life around, we all have crosses to carry and this is mine. I'm in such a better place now and keep focused on staying fit and healthy.

  • I second (or third) everything said here. I was planning my funeral (honestly) by the time I got my diagnosis - severe COPD 37% FEV. I was so exhausted all the time and coughing for England. Colds and infections just one after another. Hardly eating - I'd just given up really. I was devastated at first when I came out of doctors - I started reading people's posts on here and gradually the determination to start looking after myself kicked in. Given up smoking - nearly 4 months now - woo hoo! Started walking - a lot - even swimming - up to 32 lengths now when I go - and been back to gym. My peak flow meter stays stubbornly at the same low level but mentally I feel radically different. Stronger and more cheerful and I intend to keep fighting. See if I can get through next winter in better shape!

  • I got an initial diagnosis for IPF almost 2 years ago and almost straight away I seemed to experience increased mucus and was constantly checking my blood stats. It can be hard to concentrate as the issue is always on your mind.

    I am sure a good bit of my problem is psychological and I find it helps to be kept busy so the brain has to focus on other things. I think specialists could help more by being more positive and offering reassurance (a placebo effect) rather than simply asking how are you now!

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