One of the best strategies I’ve learnt for dealing with the uncertainty of illness is to find light in every situation no matter how bad it appears. In my case, my light usually comes in the form of humour. There’s a great quote by a guy named Larry Hargreaves that says “You can’t always change your situation but you can always change your attitude”. Wise words those.
A friend recently asked me “What has been the most challenging situation you have faced since being diagnosed with lung disease?” I didn’t have to think too hard to come up with an answer. It’s something so clear in my mind I could’ve experienced it yesterday. It happened three years ago, and these days I choose to focus on the light moments in the situation rather than the trauma that occurred with it. Living the trauma once was more than enough. I should say I’ve learnt it’s important to acknowledge and deal with the negative emotions associated with a traumatic event so they don’t come back to bite you in the future when you least expect it.
I was in the emergency department of one of Melbournes’ private hospitals. It was becoming a semi regular occurrence because I was having frequent lung bleeds, otherwise known as haemoptysis, an unfortunate complication of Cystic Fibrosis related Bronchiectasis. I recall one of the emergency staff saying “At this rate Jane we’ll have to get a plaque with your name on it put up on the wall in your honour because you have probably funded some of our equipment with your visits here” This made me laugh, not only because of the comment but the realisation that the staff recognised me. I tell you what you realise you’re a frequent flyer patient when the staff in an emergency department start to recognise you!
On this occasion the emergency ward was full, and due to it being peak winter, the staff wanted to isolate me to reduce the risk of me picking up some nasty bugs. The only room available was the supplies room. So after a little rearranging of equipment I was transferred there. Shortly after, I experienced my biggest episodes of lung bleeding ever. I managed to ring the portable bell I’d been given, and the next thing I knew I had a nurse handing me a bowl and a doctor observing me. I hit panic mode. Things seemed to be spiralling out of control and I wondered if my life was slipping away. I remember looking up and asking the doctor “Is this it”? He said “If I’m concerned I’ll have you in theatre in minutes”. He then started to reassure me by sharing a story of another patient he had treated with haemoptysis, who’d been fished out of the sea up north, flown all the way to Melbourne, and lived to tell the story despite heavy bleeding. I instantly felt more at ease, and have since shared that story with others, who have also been comforted by the fact the human body can lose significant volumes of blood before it becomes life threatening.
Feeling more at ease the doctor and nurse left the room and I thought about what I could do to try and find some light in this dark situation. It was 2am in the morning so I didn’t have any of my family around to comfort me. It was up to me to control the controllables…in this case my mind. I needed to relax and find a distraction. One thing that was apparent to me was that the supplies room was alive with activity. I was receiving a fairly constant stream of visitors i.e. doctors and nurses, many of them trying to locate supplies for their patients. Given that I wasn’t likely to get much sleep, with the light going on and off and my lungs still gurgling from the bleeding, I decided to familiarise myself with the location of the supplies most commonly sought after and try and memorise them. As doctors and nurses came in and turned on my light, at first startled by the presence of a patient, they would apologise and start looking for equipment. I worked out that the most commonly required supplies were syringes and gauze pads so I had their location sorted in my mind quickly. Apparently the supplies room had recently been rearranged so everyone was struggling to find things. There was some serious labelling required for draws and cabinets that’s for sure! As I watched the staff looking for supplies I would ask “What are you looking for I may be able to help you?” After an initial look of confusion, they would tell me and then I would direct them to the relevant drawer. Then there would usually be a collective laugh. I would then say “Clearly I have way too much time on my hands” It became a great distraction for me and an unlikely source of entertainment.
Thankfully in amongst it all I realised my symptoms had eased. I’d managed to turn an otherwise negative situation into something positive and light. I learnt first hand the impact of stress and panic on my condition. My perception and attitude in this situation impacted my health significantly. This experience definitely helped me going forward.
Whenever I now experience haemoptysis, rather than being gripped with fear I just go with it. I cast my mind back to that patient who was fished out of the sea and I tell myself I will be ok. I know everyone’s experience of haemoptysis is different, just as all other symptoms are but I hope these small tips help. It’s hard when you don’t know where you are bleeding from, whether it’s large or small vessels. There’s no question knowledge is power. For the first year of experiencing haemoptysis I had no idea what I was dealing with. I could feel where I was bleeding from, but had no confirmation because none of my scans revealed it. It wasn’t until I had a Bronchial Artery Embolisation, considered a second last resort for treating haemotysis, that I found out I had some abnormal blood vessels in my right middle lobe. The surgery has certainly reduced the scale of my bleeding, but it still remains something I have to deal with usually when there’s an infection brewing in my lungs. I just think back to when I only had to laugh to bleed and realise I’ve made good progress. I can assure you I wasn’t going to give up laughing to manage it, as it’s my best therapy apart from eating chocolate.
So the take home message is to keep searching for the light in your circumstances. Sometimes you have to look deep, but don’t give up, because there’s sure to be even a glimmer of light to get you back on track and make those dark situations that little bit easier to cope with.