Last week I started my blogs with a Barenaked Ladies song and it made me look up my old discs and this song came to mind
It would make my life easier if I did but it would not cure this awful illness. There are some things money can’t buy. I was thinking what would I do with the money. The first thing that came to mind would be to pay someone to drive me around. I am the driver in the house and I know sometimes I don’t go out because I can’t be faffed. I would meet up with more of the friends I have met through this illness. I have got to know loads of people and I regard most of them, my friends, now not just acquaintances. I meet them occasionally when we are all fit enough but if I have someone to drive me around I would pick them up and do a bit of fine dining. We would have Aspergillosis Meetings in Michelin starred restaurants! I would also chuck money towards research. I don’t think it would last long in my pocket! The imagination is running away with me again today.
Well, tomorrow is the big day and I am busy organising all the lovely selfie photos everyone has sent (it is not too late) and amazing stories which I intend flooding social media with tomorrow. The stories are so interesting as it is quite staggering the number of people that get wrongly diagnosed at first but once on the correct treatment things improve. That is why early diagnosis is paramount.
I have one more thing to add about my routine where my drugs are concerned. My GP will not prescribe 2 of my medications Colomycin and Fungizone or all the other bits that go with it, water, sodium chloride, needles and syringes and a sharps bin. So this is done separately. It gets delivered to me every 2 months from a firm that is organised from Brompton Hospital. Nine times out of ten it is a brilliant service so can’t complain but I have a cupboard of drugs and now have a spare fridge as the Fungizone has to be refridgerated. I have also invested in a small portable fridge if we go away for a weekend or something similar. With sorting medication and hospital visits, 2 lung doctors, bone man, heart, eyes and diabetes my life does revolve around being ill no wonder sometimes I can’t be faffed to go out.
Sounds very depressing but the majority of the time it is routine so I don’t notice it much of the time and even though most of the people I talk to daily have aspergillosis they are from all walks of life and we seem to have so much talent between us. Pharmacists, Horticulturists, scientists, it shows that Aspergillosis isn’t proud where it shows it ugly head. All these lovely friends have turned their hands at other things when unable to work. So many crafty people, writers, further education, singing. It goes to show what a determined bunch we are. So even though this illness can take over our lives we don’t waste a minute of it.
Join us tomorrow and spread the word.
Take care. x