I had to fight for answers to my breathlessness

I first noticed symptoms of what would turn out to be COPD, in June 2019, but I didn’t have   a spirometry test until April 2022, to confirm it or how well my lungs were coping. It’s very frustrating not to have the information you need, especially when early diagnosis and action can slow the decline.

I had to fight every step of the way

There was so much back and forth with multiple doctors, trying to work out what was causing my breathlessness. I’ve had to fight for answers every step of the way. That can be exhausting. I initially saw a nurse in 2019 because I had a persistent chest infection. The first time a doctor mentioned COPD was in September 2020, but it took until February 2021 to speak to a COPD nurse over the phone and that took a lot of chasing. And then, in April 2022 to finally undertake a spirometry test.

Finding help online saved me

Finding Asthma + Lung UK through social media has saved me. They have brilliant resources and support groups. It is in their online support group that I’m able to talk about my emotions and my fears. It was through them that I found out about pulmonary rehab and how it could help me. I have attended two pulmonary rehab courses and they are brilliant. You attend two sessions of two hours per week for six weeks. The first hour is carefully curated exercises and the second hour is education about lung diseases and what you can do to help yourself.

I had to grieve the life I thought I would have

COPD is a progressive disease with no cure. You can feel the future is out of your control. You have to grieve the life you thought you were going to have. I expected to spend retirement travelling and volunteering with children and animals, not like this. It’s hard to accept. But I have to be realistic with what I can manage.

It's all about pacing and planning

While I was on holiday in Portugal this May 2025, my breathing was not good, which really confused me. I thought being on holiday, by the sea in Lisbon, then Porto, would be great for me but I really struggled.  Anyway, on my return to the UK I went to the doctors and they advised me that unfortunately it was just a deterioration of my condition, COPD and asthma, and they would change my inhaler. 

My new inhaler is really good and I am really enjoying this summer getting out and about. However, me and my hubby just have to accept that come 7pm I start to get really tired and will be ready for home and my bed.  It is all about pacing myself and planning.