The following story is from a real person called Caroline. She is 62 and has been diagnosed with COPD for 5 years. She is talking about her experience of recovering from an exacerbation.
Duration: 3 minutes 35 seconds.
This photo and audio have been recorded by an actor but the words are from a real person’s experience of living with COPD.
View audio transcript
I hadn’t really noticed the breathlessness before I went into hospital. Well, I suppose I had, but I ignored it really as I thought it was just because I was a smoker. I didn’t want to go to the doctors, because I knew I would just get told to stop smoking and it wasn’t like I hadn’t tried. The thing I would tell other people now is to try to stop smoking. I managed it after being in hospital and this time it was easy. I was offered help, but I managed to just stop. I put on a wee bit of weight at first, but I managed to lose it after about a year.
When I was in hospital, I was terrified. I couldn’t even walk to the toilet for the first few days, I was so breathless. It was such a scary time.
For a while after I thought my life was over. I couldn’t manage any of the things that I did before; even being with the grand kids was hard. I couldn’t run after them like I used to. My daughter found this hard as well as I looked after them a few afternoons a week.
My respiratory nurse gave me a self management plan, which became like my bible. I was able to speak to my doctor and let them know how I was feeling. Having the plan gave me back up to know what I was talking about. I had to explain it to some of the GPs but now they know that I’m in control of my condition, it seems to make them listen to me a bit more I think. I know what the signs are for me to look out for now and I can spot them quicker. I have what I call “rescue medication” at home and I tell my doctor what I’m doing. I think this has made such a big difference to my confidence.
The best thing that I did was the pulmonary rehabilitation class. I was lucky that they opened a class near to me, so I didn’t have too far to travel. I must admit I wasn’t keen on it when they asked me. I thought it wasn’t for me. I went though and I have to say it was definitely the best thing I did. I was able to go back to work after and I think it helped give more confidence that I could control the COPD and not let it control me.
I’m sure it’s by doing all of these things that I managed to get back to work. At first I found it really frustrating that I couldn’t manage to do what I did before, but I learned at the class to pace myself. For instance; I used to clean my windows all at once in a couple of hours. Now if I do that, even if I managed it, it would leave me too tired to do anything else for days. I now clean one window a day. It just takes me longer, but it means I can still do these things. Pacing has been a real lesson for me. I’ve learned to prioritise the things that matter to me.
The thing I’m most pleased about is being able to go for a walk. I was scared to try although I wanted to, but I spoke to my doctor and together we came up with a plan. I make sure I have my inhaler and a drink and my mobile phone. These things all make the walk easy for me and I’ve got confidence that I can do it. It does make me breathless, but I use my exercises that I learned from the class and they really help.
As I say, I’m in control of the COPD and it’s not in control of me.
Caroline had two severe exacerbations within a year of diagnosis. Since completing a course of pulmonary rehabilitation and using her self management plan she has not had another hospital admission for 4 years.