Sue Brierley was diagnosed with pulmonary fibrosis in 2015, having started developing symptoms in her early fifties. Her husband Tony shares his experiences of living with the disease, spending time together, and not letting the disease define their relationship.
“Every day I get up and go to work, before I do I pop upstairs and give Sue a kiss while she sleeps. I’ve always done this, however, nowadays I have a sneaky listen to her breathing, like you do with a child at night, just to check if she sounds ok. I often feel guilty about doing this, but it has become part of a new norm.
Daily tasks like going to the shops can be a challenge – especially when carrying an oxygen bottle – but it’s the normal things Sue likes to do. Sue wants to carry it, but it’s difficult as she has chest pain from the chests drains she’s had and a 3kg oxygen bottle is not ideal for shopping (if carrying an oxygen bottle is ideal at all)
The gentleman in me says I carry the bags, in this case oxygen; the problem is I occasionally nearly pull her nose off when I go one way and she go another. We always held hands, we still do, only now it is also a way to stop people walking between us and throttling themselves!
We have become accustomed to being stared at nowadays. However, we do get a bit shocked when complete strangers come up to us and ask me “does she have COPD”? It is disturbing, and it still amazes us that Sue is invisible!
We are trying to make the best of every day. We are lucky enough to be able to afford to go out to the cinema, restaurants, theatre and follow our footie team to home and away matches as much as possible. I can’t begin to explain how much planning goes into a visit to make sure we can access the areas we need to get to. Football matches at away grounds are a particular challenge but we have encountered some really helpful and lovely people over the last couple of years.
We eventually bit the bullet and made the decision to buy a bungalow. Our stairs are steep so it’s time to make life a little easier. I am having a break from work shortly so we can spend quality time together getting on each other’s nerves!
I watched a piece on morning TV last week about the things people say to people with cancer. It rang true for Pulmonary Fibrosis sufferers just as much. All the usual stuff about being strong, positive, a fighter etc, when really you don’t have a choice in the matter if you want to continue.
I prefer to think that Sue is defiant. I like the word defiant because it demonstrates what she’s always been when faced with a challenge. I also like stubborn, she’s always been stubborn and it’s a trait in her character that really serves her well now.
I never envisaged that in our mid-fifties our partnership would be almost forced into the position of a patient/carer. Every day we try to make sure that the individuals we are shine through and we don’t let this cruel disease define our relationship. We rely on our sense of humour and the love of our families and friends to stay as grounded as possible.”