The most helpful person was a friend who was a pharmacist. He said: “You can live a normal life,” and explained the disease to me. He talked me through it and told me what treatment I would get. He didn’t tell me about the chest infections – but that you learn.I should have had that conversation with the consultant, but I wasn’t in the right headspace when I was first diagnosed. Subsequently I spoke to my GP, who put me in touch with another COPD Lung Disease consultant in the NHS. She explained to me exactly what the disease was about. She also explained about the COPD Lung Disease -at-home service which is available in my area.
They try to avoid people being admitted into hospital when they have an exacerbation [flare-up], so there is a fantastic network of carers who come to support you at home. If I have an exacerbation, someone is with me within an hour. I have used that service an awful lot over the years.My family have been a fantastic support to me, although my grandchildren can’t understand why I can’t run up and down stairs. The greatest thing I have done to help myself is losing weight. I lost four stone in 12 months. I weighed 17 stone at one point – now I am just over 13. It has made the most enormous difference.
The last time I went to see the consultant, my breathing had improved by more than 20%. It does make a phenomenal difference. I used to have, on average, eight exacerbations every year. So far this year, I have had one.The pulmonary rehabilitation programme also helps. It involves mainly using gym equipment, but using it gently. There’s a running machine, and I walk on it, elevating it so I walk up hill slightly. I get breathless; I’m testing myself all the time. Every time you improve.
I used to go to the gym in my 30s; now I’m using the same gym equipment, but less strenuously.I think the best thing that people with COPD Lung Disease can do is to be open-minded about themselves, to know what their capabilities are, and to improve on those capabilities. People say: “I used to do this, now I can’t.” We, as sufferers of COPD, are so worried about what might happen that we hold ourselves back. But you have to have a positive mental attitude.People often don’t know what COPD Lung Disease is. They know about asthma or emphysema, but with COPD Lung Disease you get a blank look. I am trying to educate them. I try to get it out there as much as I can. I will do anything I can to make people more aware of COPD Lung Disease.