Wednesday, October 20, 2010


I am once again home.
It has been a strange few days. I guess there are a lot of adjustments being made at present and for that, I am grateful to those supporting me to make them.

When I was first told about the reconstruction, I guess, I thought, a couple of hard weeks and then everything will go to normal. I am not sure what normal is, but I dont think that is where this is headed. Dont get me wrong, I am still hopeful that these teething issues are just hicups, but there is still that foreboding feeling.

So this stay, I pretty much handled independently, a huge step. Journeying on my own, getting up and getting in on time, the paper work, the discussions, the after care, the transport, the discharge, I did it myself. In a way, it was good to be so independent, but then there is still the part of me that screams that I dont want to be independent as I dont want to have to deal with it all.

I guess, things would be easier to handle, if they were defintive. If there were answers so to speak. Instead, I get breathless, I go through the surgery and they say, oh well there wasnt that much there. So why cant I breathe? Will this stop? Will it improve? And why do I feel so crap all the time.

The exhaustion is getting the better of me. Every surgery I have feels like it takes longer to get over. Last year, I could go through these scopes of a morning and be back at college by the afternoon, but now, for days afterwards everything becomes a battle. It literally took me 2 hours to get dressed yesterday morning before I left the hospital. I was going to shower, but there was no way I could have made my train in time if I had.

Its times like this I am thankful for my support network. Mum isnt pushing me, she is helping where she can. I got home yesterday and slept for a few hours. Alison came and we got take out. She knew I would need to offload. There isnt alot she can say, but its nice to have someone there who will just listen when I need to moan. Who can do normal yet low energy things with me.

Today I went out for an hour else I would have slept all day again. Mum has just bought me new bedding. Warm snuggly bedding for the winter. I didnt get much winter out of this bed last year due to being in hospital for most of it. She has just helped me to change it. Its nice.

I got up at 12 and by 8 I am wanting my bed again. I hope this passes. As for the breathing, I havnt felt breathless all day, but this evening the stridor has kicked up again. When I actually hear my breathing, then I know its getting bad. I am sitting with a bg box full of nebs in the hopes that it eases it up. But truth of the matter is, that I am scared. I am scared at where this is going to go or what happens from here. I can tell myself that my breathing isnt bad at the moment, it could be worse, but when you struggle to catch your breath, then fear just kicks in on auto.

This will pass. I dont feel right today. I cant put my finger on it, but I dont feel right. I feel on edge, shaky, nervous, like I am waiting for something to happen, like I am running on adrenaline.

Even this, there is no struture, there is no reason to what I am writting and I cant bring myself to string things together properly. Something isnt right and I dont know what.

I have things I want to write about, but I cant be coherent right now. So instead I am going to go curl up with a book. Night.

Oh and I finally got my video up on my last entry. :)

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