This is from Spinning by Blood Sweat and Tears. Reminds me of my brother who loved the band.
Very apt because after the high of a very successful World Aspergillosis Day I have come down to earth with a bang.
WAD was brilliant we had so many lovely photos and stories sent to us and everyone got involved. There were Hospitals, Universities, Labs and the general public reading our posts and sharing. So more than happy with the outcome.
It was my hubby’s birthday last week as well so we went out again for breakfast and had a little wonder around. Then on Saturday my sister and her husband came over and we went out for lunch at our local hostelry which didn’t disappoint. It is my sister’s birthday next week so presents were exchanged and a few laughs.
Then yesterday. Well, I had to visit my London residence!
There are quite a few of us mouldy people attend this fantastic hospital. I must admit I don’t mind going up there as in hospital terms it is quite small so I usually see someone I know. They look after me extremely well so I really shouldn’t complain. I knew it was going to be a busy appointment as I also had to go to the physio department with my nebuliser and get all new mouth pieces and have the machine serviced.
I got into clinic and it was so crowded so hubby took my nebuliser to the physio department. When he came back down I hadn’t even been weighed or done my breathing tests so I sent him to do a cake run. For those who don’t know the area Brompton is in walking distance of some fantastic cake shops but my choice is The Hummingbird Bakery. He was gone for 30 minutes and on his return I was still waiting. He then went back to physio and my neb was all serviced with fresh mouthpieces and filters. All done but the doctor. I saw Prof who apologised for the wait (very nice man). Anyway I got called in to see his registrar and they have been concerned about my oxygen saturation for some time and apparently it has been decided (obviously they do talk to each other) that I should undergo some tests. I have therefore got to be admitted for an overnight stay. Lung function tests, echo and a sleep assessment.
I don’t sleep very well – 4 hours and that is me done but I do have a problem during the day sometimes when I sit down I just fall asleep in the chair for 10 minutes. No good putting a film on the in the afternoon I miss half of it. (Glad hubby got the cake!) I did get some good news though I can try and reduce my prednisolone a bit more 1mg a month. Very slow I know but I have been taking 15mgs for the last 8 years.
Then I got sent for blood tests – an hour wait. So I was pleased when we had finished as I had a numb bum from sitting around for so long on those hard chairs.
Anyway, it is great that they are looking after me so mustn’t complain. I am sure all my fellow sufferers will know how I feel – I thought I was doing okay. I think we get used to the way we are and not always notice that things are getting worse. I am going to look at it as an excuse for more cake!
I am card making today for a fundraiser to be held in March so that will keep me occupied.
Keep well everyone there are some nasty bugs around. x