“I suppose it originated with my mother, Gina, who died from COPD (chronic obstructive pulmonary disease – a common, preventable and treatable chronic lung disease) last March. So I got to know about it after she was diagnosed about 7 or 8 years ago.
In 2019 I started having breathing difficulties myself, but it was at the same time that I was in the process of being diagnosed with sleep apnoea, when your breathing stops and starts while you sleep. I wasn’t too sure what was going on.
I’d got a chest infection and it was the nurse who asked if I snored and whether I stopped breathing during the night. And my husband told me I do both of those things. So in the end I got my doctor to refer me to a sleep clinic and was diagnosed with sleep apnoea.
I was just exhausted all the time. I was given the CPAP machine, which helps you sleep at night, but I was still exhausted during the day. Then I began to notice I was stopping breathing during the day as well. There was nothing that would trigger it. I was having real problems catching a breath, even. I was stretching my chest, arching my back, all that sort of thing trying to get air.
I rang the doctors and spoke to them but they weren’t too sure what was going on. Meanwhile, Covid hit. I was always fairly active – I worked in day nurseries with babies, so up and down stairs all the time. I just loved it.
We went into lockdown but then I went back to work after that first period ended and one of the nursery managers pointed out that I seemed to be struggling with my breath. It was concerning me, but as the doctors didn’t seem too concerned neither was I, I suppose. At that time there was a problem getting access to doctors of course.
I managed to get to see a couple of doctors face to face and they didn’t seem to think anything was the matter, even though I was still struggling.
Finally in February 2021, I managed to speak to a respiratory nurse over the phone who confirmed my diagnosis in a very offhand way but because we were in the midst of the pandemic and therefore they couldn’t do a spirometry test (a vital diagnostic test) to check on the state of my lungs. Instead, they prescribed me some medication and if it works that will tell if I have COPD.
I was given some sort of inhaler which didn’t work particularly well, but then she put me on a Genuair one, which did work. The rationale was “well if the medication’s working, you must have the condition”.
I was also checking on the British Lung Foundation (now Asthma + Lung UK) website for more information and it is absolutely brilliant. You’ve got a black hole of knowledge and you don’t know what’s going on with you – and you don’t want to put any pressure on the NHS, especially at that time, because I felt ‘alright’ really. Other people were dying all over the place at the time so I didn’t want to add to the pressure.
Shortly after I was diagnosed, I joined one of Asthma + Lung UK’s Breathe Easy groups which has been brilliant. It was there that I found about pulmonary rehab, an activity and breathing course recommended for people with COPD, and I nagged and nagged my GP to get a referral, and I’m so glad I did, as for me, it has been an absolute game-changer. It has been exhausting trying to fight so much to get help that should be provided for patients.
I’d known about the rehab through my mum, but hers seemed to be given when she had a flare up and was in hospital. So I thought you had to be really, really bad to get onto that kind of programme, and I hadn’t been.
I was told I was entitled to the rehab once a year though, so I asked to be referred by my doctor but got nowhere for a year. It wasn’t until we moved house at the beginning of this year and changed doctors that they referred me. About six weeks later I went to rehab and it was absolutely brilliant. I had two sessions a week, for two hours, for eight weeks.
I got my husband to come with me as my head was all over the place not knowing whether I was coming or going. They were really good in terms of explaining lots of different things about COPD and the exercises you can do, which really helped.
I finally got a spirometry test which came back ‘no blockages’ or something like that. But then the rehab team asked if I had taken my medication prior to the test, which I had, so they really should have told me not to take the medication before you have the test.
I was still a little bit confused as to what was going on so my GP, who is very switched, said she would refer me to the respiratory consultant, because if it’s not COPD, what is it? It was time to get to the bottom of it. So I went on the waiting list and told it’s going to be at least a year before I’m seen.
There is something fundamentally wrong with the system. It’s frustrating and scary I’m very proactive in terms of getting information and talking to people and asking questions and getting answers.
Early diagnosis of COPD is vital as is education of the pulmonary rehab system and both need to be improved, because if you can get onto the latter as soon as possible you have the basis of understanding your condition, as well as the exercises you need to do, both of which are critical. I had no idea these strength building exercises were so important. I just thought ‘what do I need these for? I don’t need muscles’. But they got me motivated enough to do a 5k walk, which is incredible. I’m rubbish if I go up a hill, not that that will stop me, and I’m out doing my gardening, so I try to keep active.
The impact of living with COPD has been huge. I struggle to get up just one flight of stairs, and although I used to be hugely energetic, most days I have to go to bed for a couple of hours mid-afternoon. I have always suffered from depression, and the impact of having a chronic condition, has led to me having frequent panic attacks. I also had to give up the job I loved as a nursery nurse due to repeated chest infections, and I have had to give up on my dream to spend much more time abroad.
I know I’m 65 but I really did enjoy working with the children and it’s such a shame I can’t do that. Now I’m just volunteering online doing reading with children, which helps a little bit. I have to just pace myself, which you have to learn to do. One minute you think you’re fine but the next you’re wiped out at the lack of oxygen.
We were away for the weekend and there was a bit of dancing, but I just thought ‘I can’t do that’. I did a little bit, but then I had to sit out. If you look at me you wouldn’t think there was anything wrong.
Living with an invisible condition isn’t easy. Especially when there is so little support, and there is so little empathy towards the condition, and it is just dismissed as ‘a smoker’s disease’ which is the kind of stigma that nobody needs to live with. I did smoke, and finally gave up in 2018. I grew up in a working class family where everyone smoked, and the only thing we thought we needed to worry about was lung cancer which seemed unlikely – I don’t think anyone had ever heard of COPD, but there are so many other reasons why people might develop this condition – such as exposure to toxic fumes in the workplace, air pollution and growing up in a cold and damp home.
Really I know I am one of the lucky ones, but there are so many people with COPD who are simply being left behind and that isn’t right. Nobody should have to fight to get a diagnosis or basic levels of care.”
Asthma + Lung UK is the leading UK charity supporting everyone with a lung condition and fighting for everyone’s right to breathe. It is calling for the government to invest more research into lung conditions. For information and support on COPD, visit www.asthmaandlung.org.uk or call the helpline on 0300 222 5800
