Found this site by accident, and so glad to read all the helpful posts. I have had COPD I now realise for at least 20 years, but i was only told by my G.P. 10 years ago. I haven't been given much information or help, apart from an annual spirometer test which takes about 10 minutes. It was only recently that I discovered that my g.p. Surgery has a respiratory nurse, but nobody told me and she has never been in touch. Over the last 6 months I have felt very ill and my breathing has got a lot worse. I think it may have been my fault, as we were on holiday in Spain at Christmas and I was coughing a lot and breathing was really bad. I had some Prednisilone with me so started to take it at 40mg a day ( I have taken it before when breathing got worse) but I didn't feel any benefit, so I carried on for a further week. Still no benefit, if I had been in England I would have gone to A and E. Anyway I hung on and we flew home , felt dreadful on plane. We went straight to our local hospital and I was admitted. However, this is going on too long, so I will hurry it up. 6 months later I still feel awful, can only walk a few steps. My g.p. Has referred me for an 'oxygen assessment' but 5 months later no response. She says that the hospitals machine for doing the assessment has broken down, so I have to be patient! I was told off for not 'tailing off' the steroids, but I didn't know this. Whilst I was in hospital I was put on another 2 week course of steroids and my g.p. Prescribed another 2 week course when I came home. I now have the Cushings Syndrome neck, which I am told is a side effect of steroids. Last month I got Shingles, and I discovered on line that this was possibly due to my immune system being compromised by steroids. I still have shingles which is very painful, I feel very unwell, and can't get a g.p. appointment for 3 weeks.
I am so sorry I have gone on a bit, just getting all this out has helped, and reading on your site that I am not alone. I would love to read anybody's comments and advice.