The unknown

I hate not knowing exactly what is happening. I dont like not being able to predict or even know what the next step is. I know its a waiting game at the moment to see what my body does, but its still frustrating.

Last time I had an appointment in London, I pretty much knew that I was going to be admitted. Things were at the point, that they would have gotten scary very soon if they had not admitted me as I was struggling too much.

Wednesday I have an appointment, which means I will be leaving tomorrow for it as I am going to stay in London the night before. But I am stuck with the dilemma of, shall I take stuff with me incase they keep me in. if they dont, then it means dragging my stuff around London with me till the train at 9pm.

Last time I was very breathless, but this time I dont know. Over the weekend my peak flows have remained stable, higher than last time I was admitted, but still low at 170, but I was still feeling breathless. Over the weekend, I have not been feeling well. Swollen glands, sore throat, headache and a cough. So I have snuggled up indoors and not really moved.

I have not really noticed the breathlessness over the weekend, but I dont know if that is because I have gotten used to it with things not dropping, or if its because I have not really moved. I pushed myself this afternoon and went to the supermarket. I wasnt out long, but I did notice that my throat was making odd gasping sounds and it did begin to feel like I was sucking the air in once again.

I am also begining to realise that when they say there is a 10% failure rate, that there are so many ways things can fail. If I had to go into hospital every 2 weeks, then that would be considered a failure, but even if they got  this stupid scar tissue thing under control, if my airway isnt fully widened which I dont think it is, that would also be a failure.

I dont know, I guess I want this to work so much, and when my peak flows remained the same over the weekend, I was trying not to get my hopes up that perhaps things had settled. But they did drop this morning, but I dont know. My cough tonight, kind of reminds me of the cough I had when I had stents. Always having to have a drink to hand to suppress my cough, trying to get enough breath between coughs to get some nebs into me. But more so, for the last 3 nights, one of my parents has checked on me at least once during the night as I have woken them up coughing, they are used to my normal cough so it has been a while since they have done this.

Ah well, sleep time, seeing as I have nothing packed for tomorrow.