Jock’s story “It took a long time to accept that I couldn’t do what I used to do” Jock Shiells, from Eyemouth, is living with COPD, a long-term lung condition. He also runs a support group for people with the condition. When he was first diagnosed with COPD, Jock found it hard to cope and struggled to find the right treatment and support. But with Chest Heart & Stroke Scotland’s help, Jock began to get the support he needed and even set up a local group for other people like him to get the same help he did. It was a big shock My breathing was bad and I had a severe cold that I couldn’t seem to shake off. It seemed to be lasting for months. That was when I decided to go to the doctors. After tests, I ended up having an X-ray and was told that I had COPD and that it was probably caused by inhaling timber dust over a number of years from my job as a joiner. It was a big shock at the time. It was hard to cope with being short of breath and not being able to do everything I was used to doing. I was finding it harder and harder to keep up with friends and family when we were out and about. It took a long time to accept that I couldn’t do what I used to do. I had to slow down and realise it just wasn’t possible to carry on as before. The worst moment was when I had a collapsed lung in 2011. I spent 18 days in hospital and had to have surgery to stabilise my lung. Up until then I had managed to carry on working but at this point I had to give it up which was a real struggle for me and a very stressful point in my life. Finding support It did take a few years to find the right treatment and support that works for me. There didn’t seem anything in my local area for people like me and it was five years after my initial diagnosis before I was able to take part in Pulmonary Rehabilitation. Pulmonary rehab is what has helped me the most to understand and manage the condition. It has also helped me to realise what I could do to help myself more and get the advice and support I needed. It should be something that is available to everyone who needs it and for that reason we set up our own Rehab support group for anyone affected by a chest condition like COPD. Chest Heart & Stroke Scotland have been hugely helpful and is very important to me. The Advice Line nurses really helped me initially. It was good to know that I could speak to them confidentially and get their help. I would say to anyone else who has COPD that you shouldn’t be frightened or embarrassed to ask for help or information as it can improve your situation. There is help and support out there you just need to know where to find it. Support group is like a family The charity has also supported me to start a rehabilitation group at my local leisure centre called the Eyemouth and District Rehab Support Group so that other people in my area can get the same support that I did. We’ve now been going for years and have 100 members. We all look forward to the exercise we enjoy together, the camaraderie and the support we get from each other. It’s a rehab group but actually it feels like a family. All of us have different health problems and everyone is there to support each other. I can’t put it in words how much it means to me but it’s just brilliant. When you come out you feel like you can run the length of Eyemouth beach and everyone says it’s uplifting. Struggling with lockdown Our rehab support group means so much to us all, so when it was announced that we couldn’t meet for the foreseeable future it was totally gutting. My main worry was how long it was going to last for and I was frightened the members would dwindle away. But actually I was utterly amazed to find it was the complete opposite. The amount of folk phoning me saying ‘I’ve been told you run a rehab group’ has been staggering. People are missing out on rehab exercise classes and keeping fit and active, but they’re also really missing the social side of the group and the banter. I think lockdown has exacerbated that and people are feeling more vulnerable and lonely, and some are living on their own which must be very hard indeed. My health and my COPD has really gone downhill too because of lockdown. I’ve put on weight and I’m not nearly as fit as I used to be. I used to swim with the group each week – I couldn’t do any other exercises on ‘dry land’ because I couldn’t breathe but swimming I could do and it was something I really enjoyed. Losing Derek has been unbearable The news has been constant with deaths from the virus but I never expected it would take my youngest brother Derek. I don’t think I’ve really come to terms with it yet to be honest. He was the fittest and youngest one out of us all, he was only 59 years old, so it wasn’t expected at all. It all happened in the space of a few days. Derek lived on his own in a caravan up in Elgin at the time because he was working up there. He phoned me on the Friday afternoon to see how I was doing and I told him I was keeping my distance and being careful. I remember him saying to me ‘now you remember and do that – keep safe and look after yourself’. Derek asked how I was doing before even mentioning that he wasn’t feeling well. That was what Derek was like really, we looked out for each other. I’ll never forget he casually said ‘well I’m just sitting here waiting on the ambulance’ because he had what he thought was a terrible dose of norovirus. I thought I would hear from him soon but little did I know that would be the last time I’d hear my brother’s voice. It wasn’t until that evening that I got a call to say Derek had been taken into intensive care. The next morning, he had to be put on a ventilator to breathe and things weren’t looking good. His son phoned me and said they’re not expecting Derek to last through the night. But Derek did survive the night and in the morning he was in a critical but stable condition. I started to have a slight bit of hope that my little brother would pull through. And then just a couple of hours later, I got the call to say things had taken a turn for the worse and they were letting him go. They were switching his ventilator off because there was nothing more they could do. It was as quick as that. My brother caught Covid and died within a matter of days in hospital. It was absolute hell. I couldn’t go to the funeral because only ten people could go at that time. The ceremony was on the 27th of March 2020, eight miles away from my house, and I couldn’t be there. Losing Derek so suddenly has been unbearable. I think it’s been harder because I couldn’t say goodbye to him properly. I couldn’t be there to raise a toast to him and remember the happy times we had together. But I am lucky to have the support of my family and friends and I will always keep him in my heart.