I came out of Great Ormond Street Hospital on Sunday evening after having steroids. This stay at the hospital felt really short even though I was there for the same amount of time I always am. I have a really big appetite again. I am eating anything and everything in the house!!! It is good that I should put on weight however I keep getting stomach aches and they get really bad. In the meeting I had on Friday, my consultant said that we should carry on using the steroid bursts for six months and then we will look at different treatments. I think this means that the lung transplant idea is still being thought about but it has not been decided that I will have one yet.
I went into school on Monday and used a wheelchair. I felt really concious as everyone seemed to be staring. I decided against using it on Tuesday but my body is really aching now and I feel quite stiff. Everyone was quite supportive when I used it but I still felt quite uncomfortable. I won't use it unless I really have to.
Today, I have not gone to school as my back, shoulders, legs and neck are all really stiff and achy. I couldn't sleep properly last night because I was aching so much.
Hopefully, today can be a day of relaxation and I will be able to get the rest I need.
We do not learn to live... we live to learn