I suppose we are fortunate than most during these weird times of lockdown during the worldwide Coronavirus pandemic. Despite a few early mis-steps, the Australian Government have been handling minimising the impact of the pandemic fairly well, with the federal and state governments fairly much in agreement as well as consulting with and listening to medical experts.

During the last weekend of February 2020, I had a bit more of a productive cough than usual. I stayed in bed, as I felt even more fatigued than usual too and that’s already a lot! I have aspergillosis, Nontuberculous Mycobacteria (NTM), asthma and bronchiectasis colonised with Pseudomonas.

My story starts like many of yours. I was treated for bronchitis for over a year, mistakenly, then pneumonia, then I landed in the hospital with sepsis and pleurisy, and almost died. After sputum cultures by a pulmonologist in the hospital, they found Aspergillus Fumigatus, Macrobacterium Avium Complex, and pseudomonas. Sound familiar?

Now that I am not feeling quite so down I thought it a good time to write about dealing with bouts of “the blues” that verge on Depression.

I have really been struggling on and off for a week or two.

Each day to me is a blessing in disguise.

I am often asked to describe the experience of living with an incurable condition – to try to help people who have not shared this unique experience to understand it, to imagine how it would feel. It’s a bit like this.

I look ‘healthy’ in this recent photo with my Labradoodle, Toby at Men-an-Tol, Cornwall, as aspergillosis is a ‘hidden’ condition…

I don’t do selfies…..(not all illness can be seen – hence the back of my head…ha ha!!) … where are the emoji’s???

My story is that I was diagnosed in 2001 after a dreadful summer of coughing, lung collapse and lots of different antibiotics by a very clever, persistent GP.

When I was told I had aspergillosis and was being referred to Wythenshawe Hospital, I cried. I cried because my brain heard ‘Asbestosis’.

Since being diagnosed with CPA I am no longer able to work. I also developed epilepsy which affects my long and short term memory.

I have Bronchiectasis and severe COPD. I have been successfully treated for Mycobacterium Avium Complex and Psuedemonas a few times.

Each day to me is a blessing in disguise.

My name is John Hill, I was diagnosed with ABPA around 5 or 6 years ago and have been in declining health with it for some time. As a result, I shielded for much of 2020, and was fairly high on the list for my vaccines, getting my second one back in April.