I’m a COPD sufferer and have been at end stage for over a decade!
( this sounds like some group meeting, be great if we could go cold Turkey and quit COPD Hey?)
Though I’ve been told recently ‘they’ don’t like such ‘negative’ terminology as ‘end-stage’ any-more, so I haven’t to say it! Well as a COPD suffer who is at ‘THE END’ I'm allowed to not really care what ‘they’ don’t like because being a very straight thinking/talking woman!! I recognise that taking away the phrase ‘end-stage COPD’ only eliminates medical failure to heal and the need to say “There’s nothing more we can do!” It also rids them of having to answer any of those "awkward" questions like "How long have I got?"...(Cynical? Yes I suppose I am) so the removal really is for ‘their’ benefit and not ours. Personally END-STAGE tells me where I stand, allows me to be in control with an understanding as to why no one’s treating me any-more and why I'm told to dial 999 if I feel a bit whoozy!!
Thanks to a self-absorbed GP who (despite my requests to turn up his deaf-aid) refused to send me to a specialist for many years; treating me wrongly for Asthma, my COPD was at end-stage before I was even diagnosed with it (Good or what?)
Though I’m lucky enough to have bucked the trend for some reason and am still walking around after 15 years, without having to tote the old Oxygen (Well when I say ‘walk’ it’s more like a slow breathy Zombie like shamble really) My constitution; luckily is such, that I’ve survived many bouts of Pneumonia and debilitating Chest infections; often without the aid of antibiotics, and come to within a day of having my life-support switched off in ICU (relatives around the bed and everything!!!!)
..and as if COPD (end –stage) isn’t bad enough, I’m now a member of the Osteoarthritis/Spondylosis club; which means my bones are a bit ‘hurty’ and I’ve to throw a copious array of candy coloured tablets down my throat each day, whilst waiting for various needle lead procedures at the Pain Clinic.
However I digress as to my purpose for posting. My Son is presently involved with artist Jayne Wilton in the production of an installation “Singing for Breath” which will form part of an exhibition in September at the Royal Brompton.
Here’s the link for Jayne’s Blog. I thought I'd post it for those who are interested in this breathing technique, also to give an insight into how even Artists and CG Film Animators are helping to get the message out and furthering the education about COPD.
Also here are links which will explain what Singing for Breath is about