In tribute to Monty Python apparently, it has been 50 years since they first appeared on our telly’s. Also, a good song as I have had a couple of bad weeks but feel I am back to my normal maddening self! Bagpipes as well!
During the tough times there was a discussion about the mental support offered to us chronically ill mouldy people. I have my down moments but I am quite lucky that I do seem to bounce back quite quickly but I have been ill all my life. Sometimes we get rotten news and leave the doctors consulting room and we think of questions we should have asked. Or you are on your way home and it dawns on you what was said. So I am on a mission. I will start by writing to my Chelsea residence (Brompton Hospital) and ask my muddle of medics what is their usual procedure for this and perhaps recommend a few things. Even ask if we (Aspergillosis Trust) can do something to help so struggling patients do not get missed. I feel when you have a chronic illness understanding what is happening to us helps us cope. It is no good going to Talking Therapies – even though they are brilliant – they will not understand the illness at all.
For World Aspergillosis Day on 27th February 2020 we hope to do a poster of the world and have photos on it of doctors, medical staff, scientists, sufferers and mycologists in fact anybody that has anything to do with this condition or anything related. Big ideas I know but it will help sufferers and us (AT) know where the research is being done and how much knowledge is out there. Please take a selfie holding one of our cards. You can download your selfie card here at https://aspergillosistrust.org/submit-your-selfie/ and we will but them all together on our poster for WAD. We hope you all will help
Lots of things going on. We have had to say Goodbye to our friend from GoodWork the PR Company that help us. She has been with us since we came up with this dream of a patient advocacy group and helped make us the driving force we are today. We spread the word about Aspergillosis and support sufferers worldwide. We will miss her and look forward to working with her colleague that has taken over her work. Every good luck in everything you do Luisa – you are one special person. Thank you. We are also trying to get ready for Rare Summit 19 on 23rd September. It will be the first conference that AT will have a representative at. Very exciting stuff.
I have 3 card orders so busy busy. We have recently ordered some new merchandise as well so we will be ready for Christmas. Some great stocking fillers.
Take care. x