Living with COPD? Share your story

Chronic obstructive pulmonary disease, or COPD (which is less of a mouthful), is a general name used to describe certain conditions where people have difficulty breathing because of long-term damage to the lungs.

If you have COPD you’ll know it is difficult to do everything that you used to do with ease. However it is often possible to manage the condition in a way that allows you to continue to live a very full life by taking one day at a time.

Do you live with COPD? Let us know:

- How do you manage your condition?

- How do you plan your day?

- What do you find difficult and how do you tackle it?

- What factors affect your condition the most?

- Are there any additional effects of COPD that you take into consideration when you were diagnosed?

To read up on COPD and how you can manage your condition visit: bit.ly/J0oiic

9 Replies

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  • where is the let you know part

  • Hi A-Wabbit, feel free to let us know about your condition on this blog as others have done below. We want everyone to come together and share their experiences. As you'll see there are some really interesting responses already!

  • Yes I have both lung diseases under the brolly of COPD, Chronic Bronchitis and Emphysema. also outside I have SOME Fibrosis yes my medics words also Pneumoconiosis (Dust)

    To put it in a nutshelf I am now living a beautiful lifestyle, Yes one if I could throw away the breathlessness and cough I wouldn't minded having the lifestyl much earlier in life. No I don't have a blog on Face book however I do have over 600 friends that speak to me about living with a disease. Yes I help and Mentor youngsters mainly who are on the transplant list and many friends that have already travelled their Journey. Last Year October I lost a very close and dear friend whom anyone that was on the BLF Forum trialist would have known Yes My Rach. Rachael Wakefield. Rach completely changed my life from an old man that never believed in religion or god, But that young friend sure taught me to believe, So much so I now have an Angel watching over me. Rach was only 24 years of age when she became an Angel inspiring people from all 4 corners of the world. I made both Rach then her Mum as we went to say our cheerio's that I would carry on Rachaels program yes promoting organ Donation Every meeting I get invited to yes Organ donation comes into being. No I am not bringing people to sign up as Rachael did but yes It is happening.

    The NHS/PCT in my Region Had me out there training to become a Tutor on the Self Management program the EPP. Now I am a trained assessor someone that assessors the Tutors to help the Participants get the most out of the program, I was asked by the chairman of the NHS how can we stop the depression that follows Diagnosis of COPD and other Long term conditions. I said by having the opportunity of a one to one with someone living a good life whilst having that condition. Yes because it was the NHS there was a fancy name and some more training So Now I am a Health Peer mentor. I will visit someone in their home once a week for 6 weeks Yes mentoring them and signposting them to the BLF Pulmonary Rehab. If you type Geoffrey Willers COPD into Google. Look for Geof's Story You will see the Video that the NHS made of me Yes it is on UTube. Yes Folk there is a great life to be had, However not only do we need to exercise physically we also need to exercise our minds. I did it and I am 70 years of age So yes my friends you also can do it. My FEV1 as crept up by 3% No my lungs are being repaired however the progression of my diseases as been altered. Yes and the best places to learn from is these places where we can talk to other people with COPD and Lung diseases. Yes learn from the experiences of others. No I am not plugging this for the BLF but their Breathe Easy Groups are a great Source of help and support. Yes I am Chairman of ours and it was the BLF's Trial forum that got me involved with that. Yes my friends the worse place to be with our conditions Is On Our OWN Bless you all and if you want it welcome to a great new Life, Nope I won't be on very much Because like I said I have 600 all with different Conditions On my wall. God Bless. x

  • - How do you manage your condition?

    now I have accepted it, I manage it better, having some not so good and some better days means learning to listen to your body - need to rest, then do, energy enough to exercise, then do, push to the limit and not past it. Ask for help when I need to, tell people I need to stop, or rest etc so they understand.

    - How do you plan your day?

    plan with a palm pilot so I don't forget things, do more energetic things earlier in the day, I don't try to fit in as much and do more things for my enjoyment now. If I need to cancel or defer something I do without feeling guilty.

    - What do you find difficult and how do you tackle it? housework - so do a bit, stop, do a bit more and slower than I used to. Leave housework if I don't feel good enough. Gardening similar. Walking far - I avoid long distances (long for me and have a blue badge.

    - What factors affect your condition the most? smoke from chimneys coal fires, spray deodorants, strong wind, cold temperature

    - Are there any additional effects of COPD that you take into consideration when you were diagnosed? needto think about planning for the future - eg bungalow. Think I have answered this question, though not a clear question ?

  • Are there any additional effects of COPD that you take into consideration when you were diagnosed? 

    A strange question this one. I was first diagnosed with copd when I was just 39 years old back in 1987. I now have very severe with an fev of only 25%, but when first told I had it, there was nothing to take into consideration. The fact is, then as is often the case now, I was not told anything about copd by my doctor. Not even that it would get worse, that it is progressive. Education, education, and more education is the key to a longer fitter life for those that have been diagnosed with this illness. Not to be left to our own devises to learn about it ourselves. I have learned more about copd than most doctors. And enjoy chatting with specialists. Maybe the question should be ' Are there any additional effects of COPD that you take into consideration when you entered the severe or very severe category? To that there would be a very long answer from me, and I guess very many others. It changes our lives forever.

    Many factors effect our condition. We can start with a bad day, and end up feeling better at the end of it, or vice versa. We are all different. For me wind, traffic fumes, pollution in general, cold damp weather all make me worse. Like most in my category chest infections are a way of life, and we are taught how to manage our own illness. Better at home to be ill. Self management keeps us out of hospital, saving the NHS a lot of money. Tension and anxiety both have a massive effect on our health. This alone can make us very breathless so we have to lead as stress free a life as possible.

    Most of us with as low a lung function as I have experience many problems. Bending down is a real problem, so a grabber is used. Putting on shoes is also a problem, so slips on are a real boon, and to help even further a long handled shoe horn is used. If in the kitchen cooking a stall to sit on saves getting short of breath, and things have to be 'at hand'. Otherwise our partner is the one to ask to hand us what pots or pans we need. Bathing is a problem, we get breathless drying our bodies. Even getting out of the bath can make us breathless. Getting dressed can be a trial. With rests to get the breath back while doing this once simple job. Walking, the smallest slope makes us breathless, and steeper ones, might as well be Everest. I think the Government officials that try to assess our claims should be made to wear an air tight mask, with just a straw to breathe through. Because the easiest way to describe this condition when in the very severe range is often like breathing through a straw. But we cope. We have to. And manage well despite our condition. Because we have to. We learn this is our new life. And despite all these problems we can, and do, live for very many years with it.

    Climbing stairs, imagine walking at the last stages, in the dead zone, up Everest. What a hardness that is. Climbing the stairs during our worse days is this. Imagine getting so out of breath you are gasping with your oxygen sats around 82% or lower. That is our lot. In truth, consciously or unconsciously, we plan each day. But sometimes come unstuck when we 'overdo it'. Something most of us do, and for this we can be ill for a day or two while we recover. I have just spent three days getting well again because of overdoing it, for the umpteenth time. We plan everything if we are in the severe or very severe stage.

    Apart from the above we have to exercise, less we get worse very much quicker. For at least half an hour three days a week. I do more. But of course not at any great pace. Some make me so breathless I am almost on the floor gasping like a fish. But we have to make sure we are fit to live. We lift little weights, we ride exercise bikes. We make sure we do our walks, it does not matter how slow we go. We have to. There is no choice as sit on our bums and we will get worse quicker and die earlier. Yep this is our life with copd:-) But hey. Despite this. I still smile, still laugh, still enjoy life. Embrace life. Because this is all we have:-)

  • Hi derrylynne,

    Have just read your post and thoroughly enjoyed. I myself suffer with Copd and severe Emphysema in both lungs. I also have Angina and just recently have started to suffer with Edema.

    I only found out just over a year ago that I was suffering from Emphysema and at third level, after speaking to someone from BLF and being advised to ask the doctor to refer me to a respiratory clinic. If it wasn't for the BLF, goodness only knows what would have happened.

  • hiderrylynne thank you for taking the time to post i suffer fromCopd and chronic asmma andEmphysema but like your self life still goes on i enjoyed your post keep up the good work.and enjoy life to the full keep smiling my freind you take care .

  • Hi there,

    In answer to your questions;-

    How do I manage my condition?... I have learned to listen to my body more.

    How do I plan my day?.... I try to do most things during the morning it takes me longer than it used to but this is when I seem to have more energy, during the afternoon I do my exercises and take things a bit easier.

    What do I find difficult? and how do I overcome the problems?..... Walking any distance, I bought a tri-wheeler, absolutely brilliant.

    What factors affect my condition?... The weather, if I have slept well or not and chest infections.

    With regard to the last question... I found it very very difficult to adjust to the slower pace of life. I felt as if I was no longer in control of my life but have since learned that when I accepted the changes they have helped me to lead a fairly active lifestyle.

  • I HAVE JUST LOST MY SON TO COPD AGED 34 HE DIED ON MAY 23 THE MORE I LEARNED ABOUT COPD THE MORE I REALISED HOW WIDE SPREAD COPD IS IT WAS HEART BREAKING WATCHING HIM TO WARDS THE END BUT HE GOT 12 MONTHS MORE LIFE HE CHANGED HIS LIFESTYLE AND A LUNG OPERATION IN NOVEMBER BUT MANY PEOPLE DONT REALISE ALL THE DIFFCULTIES THAT GO WITH COPD GOD BLESS YOU ALL

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