thank you so much for the messages.

Im having a better day today after pretty much doing nothing. Im still pretty weak but my breathing has settled down for the time being. Just bad bouts of double vision and ptosis. I keep feeling really weird, which is hard to explain, I feel like Im not really here and my eyes go all blurry and everything seems really bright.

My mum has emailed my neurologist to explain how things are but hes yet to get in contact with her.

The system here is so frustrating. Due to our geographic location there are a few hospitals, but basically my neurologist works in all of them. If I go to hospital I get put under neurology, so no one else gets to see me. It just so happened with the kidney infection I was seen by the surgical team as it was nothing to do with my "condition".

Due to this, theres no point in going to hospital. They don't do anything and I get left on a ward with nothing much happening other than more blood tests. Theres no actual treatment and Im surrounded by a team that don't know what to do. Despite the answer being completely obvious.

So I have been taking your advice seriously and cutting down doing everything that I possibly can. Its very hard.

I am waiting to hear from France. I just heard from London and the waiting list is several months long and they can't offer me an appointment right now.

So Im just stuck at the moment........great isn't it. The only thing that keeps me going at the moment is that someday they will figure this out and treat me and I will get better.

Thanks again

Love
Rach