I have been busy this week but I have to admit today I have been a bit of a couch potato.
I am doing okay with the nebulised Amphotericin even though it is disgusting but I now have reverted back to my childhood and have a drink of hot Ribena (no added sugar) after I have finished. I tend to be croaky and have a very tickly throat and the hot Ribena not only gets rid of the taste but seems to ease the cough.
Managed to do a bit of Christmas shopping. I know it is early but I tend to do things when I feel able you never know what is around the corner and as I have been feeling duff since July I want to get myself organised whilst I can. Pleased with myself really managed to get quite a bit done and buy something for myself. I have also ordered some German Sekt from my friend in Germany. Martin and I had our honeymoon in a little village on the Mosel, Kobern-Gondorf, and met some wonderful people who took us around different places, we drove around the old Nurburgring and we sampled many wines. One of the families we met were the Hahn family who own a vineyard and every year we order wine from him. He has won awards and it is only a small vineyard. So I have made a start.
Our facebook group for Aspergillus runs a Skype Meeting weekly on the Thursday and I must say I always find it helpful and talking to people who understand what you are going through is brilliant. When you have a chronic illness, let alone one that is quite rare, you can feel so alone. Subjects this week were sputum (nasty colours and texture) and then Graham mentioned lung cavities. He said that a cavity at the top of a lung is worse than at the bottom it can affect the breathing more. My oxygen saturation has been decreasing over the past couple of years and I have a cavity at the top of my left lung perhaps this explains it. The support we get from the team at Wythenshawe is absolutely amazing. I don’t attend Wythenshawe as I live far away and have mobility problems but the support group when I am feeling down and have questions is my first port of call.
Not sure why I am so tired today hopefully just one of those things but I am feeling chuffed with myself that I have managed so much this week.
Keep well everyone x