Days like this.

Its days like this that make me grateful for where I am now.

The sun is pouring through the window and although I love the sun, it means that there is nowhere cool. I am sitting in my room, windows open, blinds shut. Its dark but so warm that the sweat is pouring off me. It makes breathing very difficult and moving virtually impossible.

It brings back memories of hospitals. Running infections, attached to machine stopping me from moving and a temperature through the roof, that even with fans on, leaves me feeling so hot and exhausted.

I know that I am very prone to infections and also to complications. And that is why, I am glad at this point that I  have not had any further surgery.

I am still awaiting a call from the hospital, I do hope it helps yet I dont want to get my hopes up to much.

I am working on a plan for when I do get out.
I am ready to accept things for what they are. I am going to make the most of what I have.
I am going to ask my surgeon to work with me on getting the time between surgery longer. By Christmas, I aim to only need it every 3 months, I dont care if it makes things hard.
I need to build up my strength and fitness.
And I am going to say no, to any more 'radical' surgeries as he calls them. No more experimental, no more attempts at the unknown. Keep me breathing as I am, if it gets to the point of being trach'ed then so be it, but no further surgery after that, I will work with what I have.

I swore after my Liver transplant, no more transplants and I want to stand by that. Its something I have spent a long time thinking about.

I have a lot of reasons for it. I cant put my family through it, they cant deal with all the trips and disappointments and bad news.

I also wouldnt want to effect leglistation. I know that probably seems silly, but if they are given trial allowances and my body being difficult messes things up, then I would not like that. They need some straight forward things first. Plus they need to make sure it works from their end.

There are so many reasons piling up, that I know, right now,I am making the right descsion.

Now if this heat would just let up it would make things a little easier.