Wednesday, July 28, 2010


Sometimes, frustration seems to just build and build inside, like a balloon filling up that cant be stopped. I can feel it building up, I have been trying to ignore it mostly, but somedays I feel myself taking it out on others. And some days it just becomes too much.

I'm tired, so damn tired.
 I keep telling myself, 2 weeks and things might start to improve.
But days like today and yesterday make me want to scream.

This has all been going on for over 7 years now. I have been breathless since transplant, but got on with it. Always told that, the only thing that would help would be a trach. Saying no, every time. Until it got to the point were there were no other options. I was told a trach would solve everything. I would be so much better, I would be able to breathe free, I would have the same breathing as people my own age. I pinned my hopes on that, that was what got me through the recovery time.

And for a while I did improve. I went to physio everyday, I managed to get up 2 flights of stairs in one go once my muscles began to strengthen. I worked on my muscle building. I did my physio, I exercised, I pushed myself. But I began to go downhill again, I stopped being able to go up the stairs quickly.

And now, things are getting worse again. I find myself planning, making mental notes in my mind of what I need to remember to take down stairs with me so I dont have to make the trip up the stairs again. But even that is becoming too much again now.

I sleep for 12 hours solid of a night and yet I struggle to wake up and never wake up naturally. I have been surviving on full body washes whilst sitting in the bathroom as showers just take to much effort. Not using products in my hair as that would mean I would need to wash it again the next day.

I have been forcing myself to get up and dressed everyday, but by the time I have eaten dinner, I am struggling to keep my eyes open. I got up an hour early yesterday, went to clinic, which is only across the road came home and slept for nearly 4 hours. Today, I said I would go out with mum as if I stayed in I would only sleep. However, once out, I stayed in the car most of the time as the thought of walking, well strolling through a shop was just to much.

I have to go to the solicitors tomorrow which is in the centre of town and just the thought of getting there exhausts me. Thats not to mention the stairs or the other tasks that I need to do whilst there, like renewing my bus pass, that ran out 6 months ago, so that I can safely use it in London.

When my tube usually blocks, I take it out and take a deep breath. My lungs used to fill with lovely, cool, refreshing oxygen and I would instantly feel better. That does not seem to be happening any more, even taking the tube out makes very little difference.

The breathing gets me down, but to a point I can live with that, I can work around it and do things slowly or find alternative routes. But this damn tiredness is just getting to much. And I dont know if it is the breathing causing it, or if it is or if it is this damn wound infection that still isnt clearing up.

I have a doctors appointment on Thursday. I want to request a long, strong course of anti biotics to try and get on top of it. Taking all these silly little ones that result in my wound leaking even more 2 days after I finish the course, is not helping. Plus the more smaller courses I take, the more chance of it becoming medication resistant.

But the thing that gets to me the most right now, the thing that I am really bitter about, is that, this isnt just some random problem. It isnt down to faulty genes, bad luck or an accident. It isnt about my body for some unknown reason attacking itself. The cause is known! The cause is because some selfish bloke decided that he didnt want me talking to the police. Its down to his actions!

He has ruined my health, my life, my family, and my mind. And what did he get in return? a couple of years in prison! His time is up and yet I am still suffering. I hope he knows the damage he has caused, but I dont think it would phase him to be honest.

I accidently came across his profile on a web site the other day. Seeing his picture, bought back a lot of memories. Reading his posts about how good his life is at the moment, really hacked me off. I am not a violent person, but I do hope he gets what is coming to him one day. That he suffers in pain and that he knows at least what some of this is like.

But he never will.
He said all along that prison is nice break for him. He has friends when he goes in and everything is done for him.

I guess I am ust having one of those low nights.
I hate being restricted in what I can do, I hate not having the energy to take a shower or the breath to get from one room to the next. This was never part of any of my grand plans for my life.


  1. I don't have words but I love ya!

  2. Your text in invisible. Nothing here to read.

  3. I was having trouble reading too ... :) but now it's showing up just fine!! Weird, huh. I'm sooo sorry that you are, and have had, to go through all of this. I'm keeping my fingers crossed that the next step on your journey helps to free up your life, and that you get to do many (if not all) the things that someone your age should be doing. Hang in there kiddo!! (And I believe that what goes round comes round -- and his bad "karma" will catch up with him, I'm sure of it!)

  4. How odd. Stupid layout.
    I was going to try and do a year on the same layout, as I was worried once I started changing it, I would end up changing it every week (I get bored easily)but perhaps this is bloggers way of telling me its time to change. =]