Hello, the weeks pass so quickly!
I have been arranging everything for my trip to the uk, trying to think of everything we could possibly need to organise, it’s like a military operation- there seems an awful lot, especially thinking ahead as it may be some time before I’m back in Jersey. I’m sure I am going to forget something major! A big thank you to Aunty Jane who is sorting lots out on her side for me xx
For those of you who have been fortunate enough this week not to hear me moaning about it, i have had a stinking cold! I have felt really rotten but I have been quite lucky that although I do have a cough, it hasn’t made my chest too bad and I have avoided increased steroids this time. Interesting fact that I didn’t know: Harefield will refuse a transplant to people too reliant on steroids over 10mg because your body won’t heal properly after the operation. I am currently taking 10mg daily and although the odd increased dose is fine, you just want to keep it to a minimum.
Anyway, back my horrid cold, you know it’s not too bad if I’m moaning, it’s when I’m too poorly to complain that you need to worry. And iv moaned lots this week! Have no idea how I managed to get this cold, no one else has had one!
The harsh thing is, I didn’t just get a cold, I have had 2 really nasty days of heartburn and gastric reflux. Monday night I was sick 8 times after a few mouthfuls of veg. It’s very hard for me to breathe and be sick, especially with a runny nose and it wasn’t much fun. Especially when phil decided I was making him feel sick so he had to go in another room and couldn’t help me.
Cue: super mum to the rescue again! Thanks mum xx
Anyway, now got even more tablets and hoping they will prevent future similar episodes. I really can’t afford non eating days. I have reached 38 kg which I’m very pleased with but still want to be more by my trip.
On Saturday, Michelle the lovely therapist who helps me, came and worked on my tired muscles and she said she could feel I have put on weight. I hadn’t seen her since my last hospital stay so really pleased she could notice the difference.
Think that’s about all I have to tell you for this week, it has really been quite a boring week, just concentrating on breathing and surviving!! Sorry no pictures either this week! Xxx