The 15th of January.
Day two of photopheresis, so through much quicker than yesterday. No arsing around with porters and oxygen today. I’m still on 1.5 litres which I’m pleased with, but I’m still having difficulty if I take the specs off and try to do anything more than just sit there.
Since we got home m I’ve been working on my new crochet project which will be a cat. I’ve had to rework the pattern for the feet, but it seems to have worked.
Becky came over briefly to collect her keys that James had dropped off this morning, but didn’t stay as she actually had work to do.
I’m knackered. ECP is exhausting when you’re not at your best.
The 16th of January.
A very unexciting day. I woke up at quarter to ten, and have been working on my crocheted cat all day. He has a head, body, arms and legs, but no ears or face yet. He’s nearly done!
The most interesting thing to happen today was that I came down to 1 litre of oxygen, so I’m hopeful that I might be off it by my birthday!
I feel a bit strange about this birthday. I didn’t think I’d get here. I don’t know what I want for it, or what I want to do. I feel a little bit lost, purposeless. While I’m so helpless, attached to oxygen and unable to exercise at all, I just feel like an invalid. I hate being so incapable of doing anything on my our. I am so desperate for this flu to be gone and to be off steroids. That’s nearly the case – I’m on 1mg now and will be stopping very soon. I’m scared that everything I’ve hoped for won’t happen, that I’ll be stuck like this .