Here we are at day 3 and I have only now got up and going and am decent for the day. It is a real rigmarole each day but has to be done. Anybody that has to work and take nebulisers and do physio to clear their lungs I don’t know how you do it.
I have a few different things wrong with me which makes it hard for all the doctors as they have to make sure nothing interacts with one or other. I am fortunate in that I have been seeing the same specialist for over 30 years (he is due to retire soon) from him being a registrar to Prof Turner Warwick at the Brompton to him being a Prof himself. I always feel guilty (not for too long though) as if he sees me waiting in the clinic he calls me in before he gets my notes given to him. Dreading him retiring but there are some smashing consultants in the same clinic so I am sure I will be okay. I have a smashing mouldy man as well who loves what the Aspergillosis Trust is doing and is always willing to answer questions.
Here are my list of ailments – Asthma, Bronchiectasis, ABPA, Aspergilloma, colonised pseudamonus, diabetes, osteoporosis, rheumatoid arthritis. I have metal rods in both femurs because of the osteoporosis, plastic lenses in the eyes because of cataracts (these are getting foggy as well now), brain fog and finally getting old! But I am happy.
Aspergillosis is a very scary condition as these horrible fungal spores seem to cause such different problems for people. It can be invasive and cause damage in lungs and sinuses, fungal balls can form in cavities in the lungs and that results in bleeds, aspergilloma, and then the allergic type ABPA. These tiny spores cause such devastating illnesses and take over peoples lives. The illness gets misdiagnosed quite regularly. People are given antibiotics which are useless for the condition and this in turn results in bugs being resistant to when needed. The Aspergillosis Trust wants to spread awareness worldwide and our aim is to help as many people as we can but we need help from everyone this week. Please share and like this blog and all the social media posts you see.
My day today is doing ironing and sorting out some old clothes for a charity bag. Even though I have a hard time some mornings trying to kick start the lungs once it is all over and I have had a couple of drinks (ginger tea) I start to get on and do as many ‘normal’ things as I can.
My day yesterday consisted of writing a letter to Medical Schools and Hospitals and stuffing envelopes with our poster. The idea of Medical Schools is get them interested early and that perhaps the word will lodge in their very clever brains. Anyway 40 envelopes done and a couple more today and I think I have done as much as I can do except continuing to write daily.
Take care. x