Monday, January 13, 2014

aw heck

I keep forgetting to write. Well not so much forgetting, in that deciding not to for various reasons. But writting used to be healthy for me. The place where I got things out and stopped them building up inside. The place where I could admit my shortcomings and it wouldnt matter how negative I was about things because it was my own place. I am finding that I need that place more and more these days.

To follow on from my last post, I had more more admission left before christmas, before an extended leave from all things hospitals. Well, I manage that admision, came through it relativly unscathed and gave myself a firm pat on the back for surviving in one piece.

Waking up the next day after theater is always a wonderful feeling. Being able to breathe and talk with nothing holding me back. Little things like getting the tube without having to find the route with the least stairs or the fewest steps, timing the carriages to pick the one most likely to have seats. And feeling awake, more than anything. I spoke to my surgeon the day after and I mean really spoke to him. I told him how I felt, that I didnt see the point in going back an forth to surgery all the time, that things were unlikely to improve so why delay the enviatble. He pretty much said that he thought there was still reason to be going on, that things were in the pipe line that could help and that he wouldnt allow me to give up yet. At the end, he put his hand on my shoulder and told me to hang in there. Though I appreciate what he said and his determination to fight for me, it contradicts what other doctors are telling me, leaving me with the sense and feeling of, being lost.

That aside, I was looking forward to a nice long period of staying out of hospital. That was until I ended back in via A&E again. Slightly differnt problem this time, although I could breathe enough, I was feeling restricted, but the main concern was that I coughing up a fair amount of blood. Now a little blood doesnt bother me, I have crappy lungs and small bleeds are common, but this was more than that and so I agreed to phone the ENT team close to home, who immediatly told me to come straight to a&e. Where upon, before they even looked at me, they admitted me.

The consultant came in to review me (at 10pm because he had been elsewhere and obvisouly mustnt like going home) with a concerned look on his face. He scoped me, could see lots of inflamtion and remains of blood. told me he had a low threashold for taking me back to theatre. I was booked in for the following afternoon, just incase, put on to nil by mouth, had blood crossmatched for 8 units, given 3 types of IV antibiotics, set onto the highest humdification and oxygen and lots of fluids pushed through to keep me hydrated. Needless to say, I didnt sleep much, between all the prodding, setting up the equipment and untangeling myself from all the leads everytime I needed to pee, which was frequently given the way the fluids were going.

After a couple of sitting still, things began to settle and so on the 21st December, they agreed I could go home. Of course there was plenty that needed to be done, so the sitting still didnt last and the bleeding restarted, but I was determined not to be stuck in hospital over Christmas plus we were going away for christmas and so I just got on with it, keeping it to myself.

Christmas went well. I went away with my parents, nice to have someone else to the cooking and cleaning. We went to a ball, so it was nice to dress up Other than that, lots of quiet family time, which I was most appreciative for.

Since then, the bleeding has become a thing that comes and goes. I have a bad couple of days followed by a good couple. Its not something that i am concerened about. My infection levels are pretty low at the minute, so other than the tiredness and occasoinal pain, things are good.

I have seen my GP and had my anti depressant meds increased. I ama hoping that this is something that will help, because I do feel like I am going slightly crazy again, which is never a good thing. Twice this week, I have come very close to some old habbits of harming. I know how slippery that slope is and once I start, I know stopping will be next to impossible. I am fighting this with all I have. But in truth, things are messy. I find myself up till stupid oclock, because I cant stand that time when your brain thinks to much, between deciding to go to sleep and actully falling asleep. I wait till sunrise, when things are lighter and feel safer. My mind clouds up with all the dark feelings and thoughts. I think thoughts of treatment run in the same line. I replay various scenarios over and over in my head and find myself bouncing between 2 opposite ends of the scale. Part of me wants to get better. To do all the things I planned. Uni, carer, job, friends, independant livining. And the other part of me dreads so much just waking up again the next day. The thought of slogging through more of this time, the pain that goes with it included, living each day, living each moment, makes me just want to run and scream. But I keep telling myself, one day at a time, one foot in front of the other, thats how I get through this. and so it goes on.

But things should settle soon. The moods ease into a pattern. Life to continue.

Its like over the last year, I have lost who I am.I have given in and become my illness. And that is one thing that I have always hated in others. Your illness shouldnt define you. And that is why I want this time off. To rebuild myself, to become me again and to give life to some old projects, things that are me, away from the stigma of illness and all the thoughts that go with it.

And that is my update for now. Time to keep thinking og more shite to moan about.

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