COPD means I can only plan daily
Some days, Chris finds walking just five steps is a great struggle.
"I’m going to die! I can’t go on trying to breathe!" I desperately yell, or perhaps whisper. And then I'm gone.
Later, I see vague shapes but we don't understand each other. I whisper something that my daughter, who suddenly appears out of the misty blur, seems to understand. I am in a hospital ward, she tells me. I have been in hospital for 4 or 5 weeks - OMG, too much to deal with.
Now, that was a little under 2 years ago, and I'm very fortunate to have recovered. That episode of respiratory failure is the penultimate stage in breathlessness. The ultimate would be death.
I have severe COPD
I have smoked millions of fags, well I think about half a million in 45 years. I stopped some 9 years ago. So I have severe COPD, and a lung function of about 15%.
I've done pulmonary rehabilitation three times in the last 6 years and currently go to an exercise class every week.
I need to take lots of different types of drugs, and carry a portable oxygen cylinder around with me so I don't get too out of breath.
Breathlessness also has a permanent, long term effect on us and our loved ones. Dreams have to be ditched. You must remember that we have suffered a loss – a great loss. There are things we have had to reduce doing or even give up. We’re never really sure we’re going to get to any date we set up.
For me it's really sad that I can't go to the USA any more, where we have many friends and relatives. Losses mean depression, sadness and resentment. And that leads to rejection, isolation and unhappiness.
But help is at hand. Don't forget the British Lung Foundation has a helpline open to anyone affected by lung diseases, their families and carers, and health care professionals. They also have local Breathe Easy support groups all over the country offering support.
COPD: can only plan daily
As long as it works, we all take breathing for granted.
I think it's hard to imagine what breathlessness really feels like. My wife reminded me I had explained it to her as, “I am aware now of every breath I take”. Today I would now add: “but also of its own quality”.
To be quite frank, I am only comfortable when I am lying down or sitting down doing nothing physical. So it is no wonder that people like me can easily become inactive and seat-ridden, unfulfilled and depressed.
For no apparent reason I can wake up and find that even walking the five steps to the loo is a great effort that leaves me wobbly, breathless and tired out. The next day it’ll be easy-peasy - or something in between.
The important thing to understand is we are constrained in every sphere of life. The simplest every day act can be a trial.
For me, COPD really stands for Can Only Plan Daily.
Luckily, I am very well supported. I have a sympathetic GP practice. The respiratory ward at my hospital is outstanding. The exercise class is very useful, and I have a physiotherapist who not only comes and sees me but is available by email and phone, often with an immediate response. My family help me so much, too. My wife is my carer, and then there's my daughter, my sister and the relatives.
I hope I've given you fresh insights into the lives of people with COPD. And perhaps a deeper understanding as to why we are like we are.
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