This disease is so unpredictable!

Last year I had a relatively good year finishing with a week in Llandudno where I could walk up and down the prom most days.

This year I caught Covid on Boxing Day and haven’t been well since.

Right. From the beginning, well not totally from the beginning but from before I was diagnosed with Allergic Bronchopulmonary Aspergillosis and the lead up to it and how it has affected both my family and I.

I smiled when Jill Fairweather asked us to write a few words on how aspergillosis affects us. I am sure most of us could write a novel on the effects it has had on our lives, before and after being diagnosed. I could write a novel on applying, fighting and winning my personal independence payment (PIP) allowance with this disease alone.

It took about two years to finally be diagnosed with allergic bronchopulmonary aspergillosis (ABPA) in October 2008. In that time initially in the Autumn of 2006, I had a chest/lung infection about once a month, every month.

It took almost five years for me to get the correct diagnosis.

Previously to that, I had been given medication for adult asthma, angina, chest infections, bronchitis, rheumatism and many more ‘theories.’

My journey began with a wheeze, as I was born asthmatic. I had chronic asthma as a child growing up with many asthma attacks and chest infections. I had a respiratory Consultant and Physio sessions regularly.

I’m a fifty-two-year-old woman diagnosed with the allergic form of bronchopulmonary aspergillosis (APBA) in 2016 after three or four years of symptoms and signs; then developing semi-invasive chronic pulmonary aspergillosis (CPA) in 2017.

Hello, I’m Marie & I would like to share my story about how Aspergillosis has changed my life forever.

A different kind of Easter.

Easter has now come to an end. A very different Easter to what we had planned. Our trip to the Isle of Skye had to be postponed until the first of ? nobody seems to know. A lot quieter than normal this year, but our table still had good food on offer. Hot cross bun, anyone?

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.