I was diagnosed with COPD in February 2014, although I must have had it for a while. I had smoked heavily for a good part of my life but had actually given up 6 months before my diagnosis. Apparently, it isn’t unusual, once your lungs are breathing fresh air, for the damage to reveal itself and breathing to become more difficult. I spent 6 months having x-rays, ECGs and so on, and then was diagnosed with COPD.
Back in those early days, I was having an exacerbation or crisis every five or six weeks. I would be pumped full of antibiotics and steroids, knowing that if they didn’t work, I would end up in A&E, unable to breath. When you are going through an exacerbation, it is very obvious to your family and those around you that you are struggling for breath. It was terrifying for me, and extremely worrying for them to watch.
I also couldn’t sleep lying down. It panicked me and I found it very difficult to breathe. I had to sleep sitting upright in a chair, which of course is not particularly restful sleep.
I had to give up golf. I was a keen golfer. I wouldn’t say a good golfer, but a keen one! But that was all in the past and I basically became a couch potato waiting for the end.
One day when I was at the doctor’s picking up a prescription for my usual haul of inhalers and medicines, I noticed a poster from Northern Ireland Chest Heart & Stroke. I called Pauline Millar, their Respiratory Support Co-ordinator, about their monthly meetings and she was there at my house the next day, explaining how they could help.
Pauline wanted me to go on their Taking Control Self Management Programme. She said that although COPD can’t be cured, it can be managed. I didn’t believe her.
However, it was a remarkable experience. Soon, infected by the boundless enthusiasm of Pauline and her team, we were setting bigger and bigger goals, paying attention to diet, gaining strength from each other, making long term friends….All emerging from the dark.
I went on the Programme as a complete sceptic, a man waiting to die, and left as a man who goes to the gym six times a week! I was never a gym person. Before this the most energetic thing I would have done would be to move the mouse on my computer. At Pauline’s suggestion, I went to Pulmonary Rehab at the Grove Health and Wellbeing Centre. From there, I started going to the Grove Leisure Centre. Now I use the treadmill and cycle, and sometimes the cross trainer, rowing machine and a few of the weight machines. I am usually at the gym for two hours every day, including time in the sauna, steam room and chatting.
I am also back playing golf. I can’t walk the full course and have to use a buggy, but getting back to my favourite hobby has been very important to me.
It has been a complete transformation.
I have not had any exacerbations for 18 months now, and since completing the Self Management Programme, I have had no problems sleeping – in bed, lying down, like normal. I might wake up two or three times a night but I am getting healthy sleep now.
In a recent check up at the Respiratory Clinic, the nurse retook my spirometry test. When I asked her what was wrong, she said she was retaking it as my reading was better than the year before and she wanted to check it. COPD is a progressive condition and yet my lung function had improved by 10%. Even though my lungs are not getting better, the exercise means that they are better able to use the oxygen in the air I breathe.
I have taken up Tai Chi which focuses on abdominal breathing and helps me to use all of my lungs. My lungs are damaged so I need to use as much of what I have as possible.
It just shows that exercise is vital to anyone with breathing difficulties. It can be very scary starting to exercise when you can hardly breathe, but it is worth it in the end.
I want to tell people that no matter how bad your health condition may appear to you, taking the right advice can give you a new lease of life.
I have gone from a very dark place to having a future. Eighteen months ago I started what I call my “death diary” noting all the financial and practical information that my family might need after I am gone. I didn’t finish it – I’ve decided it can wait a while longer!
Frank has made an incredible journey and is now qualified to lead Taking Control sessions, helping people who are the position he himself was once in. He led his first group in early 2019.
Find out more about the respiratory services that Northern Ireland Chest Heart and Stroke offer.
