'm so sorry, it was only yesterday that I said I wouldn't post again for a while. And I feel that I must apologise, as I realise there are so many people much worse off than me, yet I can't stop crying. I can't get out of bed to face the day. Please forgive me for sounding so pathetic.
I was recently diagnosed with COPD [moderate - FEV1 50%]. I found out last week after being released from hospital post pneumonia. They put me on Trimbow twice a day, and I see the respiratory team in another 6 weeks. I [obviously] have an anxiety condition which I am receiving treatment for.
Thank you to everyone who has answered my questions regarding COPD, but I just can't get my head around the fact that I can't halt this disease, no matter what I do to help myself. I am 55 years old and my son and husband are the lights of my life. I had this [stupid] idea in my head that by doing all of the right things I could stay alive for at least another 20 years to be with them. The thought of waking up with this utter despair every day terrifies me.
Could someone please, please share a positive story/experience to help drag me out of this hole of despair I have dug for myself? Thank you so, so much, and I'm so sorry to post once again. I feel nothing but despair.
Written by
puddy68
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My heart goes out to you. This is my story and I hope it helps. Sorry it's so long.
I was diagnosed at around 50% fev1 in 2000 - I was 54. So I am now 78, in reasonably good nick and only need ambulatory oxygen for exertion. I don't use it for e.g. climbing stairs, lifting weights (2xweek), gardening. Just for walking fast (haha - fast for me is kind of a stroll for others!).
I also have severe asthma and bronchiectasis though the latter is considered "dry bronchiectasis" and doesn't trouble me. At a patient representative event some years ago, a copd specialist GP told us that if you have both copd and asthma, you are dealing with a double whammy.
BUT - I am still here, living a good life. Go out regularly. Regular coffee and occasional meals out with friends, trips to garden centres, National Trust properties/gardens. I tend to be either pretty well, or very seriously ill and hospitalised (last hospitalisations twice in 2018) with respiratory failure and double pneumonia).
So I have taken certain decisions to keep myself healthy and virus-free. You will need to think about what will work for you. I make sure friends know to never come near me when they are infectious; I never go to parties or any other crowded indoor situation. This is a loss but the payback is more than worth it as I have been virus free since 2018. This may be tempting fate but it feels important to let you know that it's possible. I get all my jabs and have so far (praise be!) never had covid.
Regular exercise: 15' minimum walking daily except when fatigue is bad - Ive recently been diagnosed with heart arrhythmia and now on blood thinners which make me tired. Weight lifting 2 x week, session of exercises on non-weights days. I have done PR twice which is an excellent grounding for both necessary exercise and education. Constant use of sanitiser and washing hands. Avoid pollution of all kinds, ie cleaning materials, second hand smoke, wood smoke etc.
You need to educate your family/friends on keeping you safe. It is hard, I know, if you have a husband who goes out to work and brings back infection. Not sure how I would manage that. My partner and I retired 2005 and 2006 so since then we have been able to control who we see and our community of friends here are very thoughtful.
I have no idea what my fev1 is now - it was 36% in 2018, taken after I had come out of hospital. Things are of course slower but I'm very much here. No idea what the future will bring but I can live with that having now lived with the condition(s) for 24 years. I so hope you can find your way through your fears. I was terrified when I was first diagnosed but that stage passes.
Sending very best wishes to you and please don't worry about asking questions. Questions are great - the answers dont just educate you but many others newly (or even not so newly) diagnosed. If you want to message me individually please do. Also consider, if you haven't already, calling the helpline - their nurses are wonderful, 0300 222 5800 . You could also find out if there are local self-help groups in your area .
Hi I'm new here and haven't posted anything yet. I am so reassured by reading your post and your positivity is uplifting. I was diagnosed with bronchiectasis, allergic broncho-pulmonary aspergillus and now haemophillus colonisation alongside eospinillic asthma (always been asthmatic but this latest diagnosis has enabled me to start biologics this year).
I have been in complete denial for years and don't do the things I should do to take of myself. I am so glad I have found this forum. I feel I need support and education and as good as my hospital is, I haven't had any support at all. I have been battling with an ever increasing load of diagnosis since around 40 years old. I'm now 58.
Thank you for your positive reply and thanks to puddy68 for posting her message. It's helped me too.
Hi Puddy68,Oct 2008 I was dxd with lung cancer,had a upper right lobectomy.Long story cut short,post treatment I went back to my GP to request a return to work.His reply was why don't you take some quality time out with your family since only have two years left max Reading your post takes me back nearly 16 years,yes despite my GPs prediction I am still here.
I completely understand your anxiety,however,your imagination is running streets ahead of your actual reality.Sit down relax,first off are you sleeping at night,if not,this is the first thing to address.Get to your GP and get on a course of sleeping pills,this will tide you over this rough time you are going through.
It is time that's the best healer in my experience,slowly but surely you will begin to relax into your situation .I was dxd with COPD in 2019,again my anxiety levels shot up,but having gone through my LC experience I realised imagination is not a true reality.
You will begin to realise that COPD is something you can live with for years more than that you can still enjoy life.I have read of COPD patients who have lived with it for over 20 even over 30 years.
I am 75 years old and looking forward to seeing my grandchildren growing up.
Well it's time for you to get yourself out of bed,search out activities you can spend some time with .A great one I found was joining a gym and yoga class,funnily enough I was the only male attending class amongst 16 women,this didn't bother me one inch.My classes resulted in making lots of new friends.
Go for it,you had nothing to lose and everything to gain, IE your life back
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Newbie and scared to death. PLEASE HELP
Please Help!
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COPD is so ;(£&&@ Frustrating!! 
