Carol Cooper Taylor
Ex Hawke’s Bay resident and Asthma Achievers Award Winner 2014, Carol Cooper Taylor (CCT) was diagnosed with COPD in 2006. Finding it hard to cope with working full-time Carol described life then as “pretty miserable”, it had become work, eat and sleep with no energy for anything else.
Her experience led her to co-author a book on living with COPD called “Don’t Forget to Breathe.” We (BHB) asked her about her journey, the book and any advice she has for other COPD sufferers.
BHB: How has having COPD affected your lifestyle and that of your partner/family?
CCT: Initially life seemed to spin out of control. It was obvious I would have to take early retirement. I grieved for what I thought I was losing. It felt like life as I knew it was at an end. Phyl, my partner, had to cope not only with her own grief for what this disease meant for our changing future and her fears of life without me, but also with me as I spiralled into depression. Thankfully Hawke’s Bay has wonderful mental health care and today my mental health is good.
Once I got through the months and months of anger and grieving for what was taken from me I gained a more balanced life view. There are very many things I can still do and life is far from over. I enjoy life at a slower pace and I have time to do things I never had time for when I was working. I am never bored stuck for something to do.
BHB: What inspired you to write Don’t Forget to Breathe?
CCT: Being referred to pulmonary rehab was wonderful. Something you need to keep at so I got to go on it several times. On my third go it struck me that all the info I was getting needed to be made available to other COPDers. Sure it’s out there on the web if you know where to look, but it’s not usually NZ centric and is dotted all over the web. So I suggested to Sue Ward and Carole Donnelly, who ran rehab, and Phyl that we should write a book; we were the ideal team – a nurse, a physio, a patient and a carer. Thankfully the response was positive and the hard work began.
BHB: Tell us a bit about that journey? How long did writing the book take?
CCT: In the beginning I was still living in Hawke’s Bay and attending rehab. So we used to have team lunch meetings in the hospital canteen on rehab days.
As a team we mapped out the content and each started writing the bits we were interested in. Phyl became the proof reader and medical jargon buster making sure everything could be easily understood. For parts we weren’t familiar with we cajoled others to write for us. I edited it all together into a cohesive whole.
It all sounds easy when put like that, but it was two years of hard work and new skills had to be learnt like using Google docs so we could all edit the same document. To make matters even more challenging we moved to Northland in the middle of writing, so the team had to move to Skype meetings.
Once the first edition was finished we launched it on the website http://dontforgettobreathe.org.nz/ as a free download, talked about it at conferences and plastered it over social media. I even won an Asthma Foundation’s Achiever of the Year Award in 2014. Something I shall always cherish.
BHB: What has feedback been like?
CCT: Now in its second edition we have had over 18,000 downloads from the site from around 50 different countries. I think the number of downloads is testament itself to the usefulness of the book.
The feedback has been fantastic.
BHB: What is your best advice for people living with COPD?
CCT: Firstly, if you smoke stop. This is the best thing you can do to help yourself. Then remember that you can still lead a fulfilled life with COPD.
Take exercise, do what you can when you can but make sure you keep moving.