Coping with Aspergillosis
So how does one cope when discovering they have an unwanted guest residing in their air ways or nasal passages, or any where for that matter?
My own experiences most likely mirror those of many ABPA sufferers but I thought I might mention them so any newcomers to our fungal community could be forewarned of what they may expect. So here goes.
Upon being informed I had Aspergillosis, and the fact that my consultant insisted I sit down and brace myself before he told me, was somewhat disconcerting to say the least! I really thought he was going to say I had cancer or a similar life ending disease or illness! In some ways he was right, aspergillosis can be life threatening, it is certainly life changing!
For the first year or so, my life did not change that much. I continued to work, perform (musically) and play as before. My medication had obviously changed and some aspects of my normal daily routine began to differ from the past years. But I was coping well, I was in an out of hospital frequently but that did not faze me as much of my life had already revolved round hospitals, clinics, veterinary surgeries and Shamans caves. As far as I was concerned, it was simply another lung condition that I had to adapt to and I failed to see the importance at that time.
However as time went on as it does, I became more and more aware of the issues relating to aspergillosis, my health declined quickly, my medication arrived by the truck load and finally I could no longer do my job.
I was retired on medical grounds in 2008 and at the tender age of 50 (ish), I found myself on the scrap heap of humanity!
Being home all day and every day while my wife went off to work destroyed my composure. Suddenly I was no longer the `bread winner’, I no longer had a career, nor prospects or even hope for the future. So I rapidly sank into depression!
Prednisolone and Itraconazole did little to ease my situation as I began to suffer the side effects of these two delightful forms of marvellous, modern miraculous medication. Boredom set in soon after, along with tiredness, nausea, weakness and insomnia. I began to gain weight and lose interest in all about me as the disease drew away my strength and resolve as blotting paper draws ink! I felt alone, useless, sick and all male pride, ambition or independency slowly and finitely seeped away.
I knew of no one else with this disease, I had no one to seek advice from, nor comfort or reassurance. Thoughts of suicide drove me to riding my large powerful motorcycle fast, sizing up walls that I could possibly drive the motorcycle into without risking others! I was referred to a psychiatrist in response to my consultant recognising my mental state and a Counsellor as a back up. All to no avail, I sank deep into depression and even self pity, something I have never done before!
But there is always a light at the end of the tunnel. It took me about two years to come to terms with my condition, my disease and my future status, but I have. Several things helped me regain my life and interests, several people contributed also. My family continually rallied round me with support and love, my friends offered understanding and awareness of my declining health. I changed the way I looked at each day and found new hobbies and interests that enabled me to combat some of the boredom.
I was forced to sell my motorcycle unfortunately, so I bought a boat which my whole family can enjoy. Yep I know I can simply slip overboard during a bout of depression but I won’t, never liked cold water, with or without soap! I no longer sing, dance or perform on stage, I have taken up writing in stead and I still do occasionally play a musical instrument.
Support and guidance from the online Aspergillus site gave me the welcome information that I was not alone; there were many others just like me! My consultants and GP’s learnt quickly and were soon able to offer me the treatments and advice I needed, and so after a hellish time I learnt to adapt in mind and body.
By researching the disease I discovered vast amounts of information that helped me live my life as fully as my limitations would allow. I discovered much of the tiredness, weakness, depression and the general feeling of being constantly ill could be laid at the door of the medication I was consuming. This enlightenment allowed me to compensate and spend my days appropriately.
At last, four years after losing my job, my pride, my independence and the loss of confidence as a man, I can begrudgingly face the world and my future once more. I now know my limitations, refuse to surrender and often ignore them, I know where I am and where I travel in the universe, I think!
So anyone new to this disease of Aspergillus, please take heed. At first the situation appears dire, and then it becomes dire. It may appear to take eons before the bubble bursts and you re-enter the sunlight and warmth of a `normal’ life, but you will.
I have learnt to live with my fungal lodger and the baggage that accompanies him. It was not easy but life goes one, so live it the best way you can!