Monday, October 29, 2012


I complain a lot about sleeping too much, but yesterday, really took the record.
I think I spent a grand total of 2 hours awake in the entire day. Dont get me wrong, I crammed a lot into those 2 hours, including an hour on the loo (TMI?) and time to consume half a bowl of soup, whilst falling asleep enough to tip the other half a bowl all over myself. Its a good job I am unable to eat my food hot, else that could have turned nasty.

Something in my body is still complaining, my stomach is still being a diva and demanding attention, so I am guessing there is something lingering there. It seems so hard to keep myself hydrated, especially when silly hospitals keep me nil by mouth for a whole day at the same time as my stomach refuses to keep anything inside.

hmm, did I tell you I was home from hospital? It appears I did, though I didnt mention that, I actually kinda walked out of the place. oops. I say kinda, they said I go, I was just waiting on meds. The night before they declared that they had lost one of my meds, this was right at the end of visiting at 8pm, I was prescribed that one for 6pm :/ My parents where with me and so they had to go home and bring the meds back. The next morning, guess what, they had lost the med again.

I saw a nurse for painkillers at 4am and the next time I saw anyone, was 11:30am to say I could go home. I asked for painkillers and was greeted with, we have lost your meds, I did tell you. I shouted some, well as much as you can the day after surgery. They should have had at least some of them and my pain meds. In the end I got my bottle of morphine off them, to take home I add, not to take now. I was in agony and very rapidly losing my cool, so I took a big mouthful and tried once again to get the meds that I had taken in with me. She said she would go a look, but by this point, pain and tiredness had worn me down and I could feel tears forming. I didnt want to cause a scene, so after 20 minutes and still no sign, I left the ward and went home. Took all my morning meds that were due at 10am inc anti rejection meds. I thought they would call at some point, but nothing. Least its one less thing to deal with and hopefully I wont have to go back any time soon.

Sometimes it just feels like my body is giving up on me. Like it has said enough is enough, I refuse to do anymore work. I just wish sometimes that people would listen to me.

I tried having a conversation with my main surgeon last time I was in. I told him, that I think we needed to start looking at what stopping treatment would mean. That I would go for this next surgery, but if it didnt help, that I dont want to go much further. I have never seen a surgeon squirm so much. Kinda funny really, they can deal with all the grossness of the human body, but mention death and they are out of there. You know what his reaction was? He said lets see what happens and then shook my hand. Really shook my hand!? I havnt shaken hands with him since I first met him over 2 years ago. I actully wrote an entry on this on my ipod, but it looks like it might be lost, as I have lost my ipod. :/

I guess he sees me in clinic and sees how I get on with things. But he dosnt know my life, he dosnt see where the quality is, or lack of it. That I am 26 and have no friends. That the friends I did have, I put to much on, that they cant give me a simple no when I ask for something and instead make excusses, that are see threw or fit other things into the time they were to busy with other stuff in. That just makes me more bitter, to feel lied to and so I stop caring and without my pressure I am easily forgotten.

That at 26 years old, going out, means being with my 64 year old mother and using a mobility scooter. That to walk around a local supermarket, means I go home and sleep for 3 hours. I dont have social interaction, talking is hard work and painful. That the time I am awake is mostly spent fighting with doctors, hospital and secrataries on a power trip, trying to get done what I have been told to get done. That most evenings, I spend fighting with myself. My body saying take some painkillers, let me rest and escape this, whilst my mind says, dont touch them, i am not strong enough to deal with the side effects today.

Its like when you bargain with a small child. Child says, I dont want to eat my veg. You say, well eat the carrots, 2 sprouts and a piece of brocilli and we will call it quits. The child replies how about half the carrots, one sprout and no brocilili. Thats what it feels like inside my head some nights. Only some, other nights my body wins out and I escape to the dream ladden land of nod.

But I would also tell him that I live in fear, from the time I wake up to the time I go to sleep. Its always there. Sometimes in the forefront, sometimes lingering in the back, but always there. Death by breathing issues, is never romantic or poetic, its not peaceful and pain free. Not how they display it on tv, where you just lie there, sleeping a lot and not really aware. Instead you feel the pain, the exhaustion, you chant over and over, in and out, in and out and whilst it seems so easy, every part of you hurts and cries with pain. And it goes on for a long time. Your body adjusts and as you are sitting still, you need very little to keep you alive. Just in and out, in and out. I dont want things to be drawn out. My familiy could not cope with that. They already struggle. There is no support network in place for them anymore. Just the two of them. Also like me, they have cut ties with the outside world. My brothers and sisters have all gone, in fact my sister got married this week. Funny isnt it. But we were not the only ones at the wedding, none of her children were, only one member of her family was there.

Yeh, so you can tell my mood tonight. Tonight, my body complains again. It wont allow me to have more than 3 ok days in a row. Its tiring and painful and my ability to cope with it all is getting thinner.

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