I still didn't get much up in Physio. However, I think this is now because the new antibiotics have kicked in. I really think they're working. My oxygen levels are up to 98 on the NIV (compared to 93) and are 94 on 4 litres of normal oxygen. I feel better. I've eaten 2 meals today and feel a bit brighter. The only thing bothering me now is this fluid retention. Big feet and legs making it even harder to move around and a big stomach making it even harder to breathe. Hopefully the doctors will reduce my steroid dose tomorrow.
I know I've been up and down this last month, but I really feel positively about this change of antibiotics. My consultant can say what she likes about it being unlikely that I'm fit for transplant, but she can't feel what I feel inside me. This drive, this mini person keeping me going, telling me I WILL make it.
I'm really surprised people are actually following this blog. I'm flattered by all the lovely comments and encouragement I'm getting from you all. It's really appreciated and really helps keep me going :)